A helpful tool is your State's Department of Health and Senior Services published materials for information on the responsibilities of the Long Term Care Facility and the rights of residents, families and caregivers. Here's the site for MO: http://health.mo.gov/seniors/nursinghomes/lawsregs.php
A primary person at the facilities should be the Social Worker who is supposed to be the advocate for each individual patient. However, they're employed and paid by the facility or ownership.
Here's a revision of Missouri's Ombudsman (now VOYCE) "The Role of the Social Worker in the Long Term Care Facility" pamphlet originally written as a result of a conference of independent practitioners and academicians from 1985 - 1987, it's gone through three revisions with the latest from 2005-2006 and latest publication in 2008. We've found the Table of Contents on Page 2 most helpful:http://health.mo.gov/seniors/ombudsman/pdf/RoleLTCsocialworker.pdf
Remember, this is a report, a guideline, it has no real legal authority and only the published laws, rules and regulations of the State, the County, the City and Federal Authorities with jurisdiction detail what the realities are regarding the specific obligations of Long Term Care Facilities.
One of our early misconceptions was documents like the above were actually enforceable. They are insights and possible procedures but not mandates. The actual State laws are very broad, rules and regulations are developed to "funnel" down some more specific mandates. Then there are Medicare and Medicaid requirements for receipt of funding.
Some sections of the referenced report from the ombudsman we've found most helpful: Pre Admission Screening, Resident's Rights, most important section: Individualized Service Delivery including areas entitled Care Planning, Minimum Data Sets, Assessments, Notes & Plan of Care. Again, however, go to the actual State Rules and Regulations and there may be several under different areas. One of the greatest assets we have as caregivers and those who are growing older is the internet and its vast abilities to seek and find and refer to other resources.
SUGGESTION: Spend the small amount of time and money and get a copy of each individual assessment and caregiving plan. The insights you'll gain from the facilities observations and reports as well as what has been submitted to "higher authorities" that must be transmitted to the State and Medicare/Medicaid can be invaluable as time passes.
Be sure to ask what specific reports, evaluations or other State, Federal or other entity required documents the facility must complete, produce or provide and on what regular basis to ensure you have a "total picture". And, always do it in writing; you'll probably have to pay a per page price so you can always ask to review any and all documents and reports and request specific pages or a page. In hindsight, I would do this from day one of entry of a loved one.
SUGGESTION: If you value the quality of life of your loved one, maintain a close and highly observant role and keep a diary, record or notes; today's cell phones and computers make this much more possible to maintain, update and retain words, pictures and videos of your loved one as mentioned in the blog entry: http://lifetimesthreelivingwithlbd.blogspot.com/2014/04/six-specific-resource-websites-for.html under Lesson #5.
SETTING THE PACE IN LONG TERM CARE FACILITIES
Having experienced several Long Term Care facilities for both Rehab Care and Long Term Care, we believe it is the Administrator of the facility and the ownership/top management who generally sets the "pace" for the involvement of all employees and independent contractors "employed" by the facility.
Depending on the "hierarchy" within the facility and the Staff Responsibility Relationship Chart (if there is one) as to whom the Social Worker reports to, is directly responsible to, there can be a wide variance in the actions of the Social Worker, the level of competence and the level of the person's ability and/or responsibility.
As mentioned in the previous BlogSpot entry above under Lesson #6, check not only to see if your Long Term Care facility has a Resident's Council, but that it also has a Family Council.
KNOW BEFORE YOU GO: Attend a Family Council Meeting and if they don't have one, ask how the families communicate with one another.
Before you choose to admit yourself or a loved one, attend both of these and at the Family Council, which is open to "everyone" in the community, you do not have to be a family member, ask to see any and all notes from meetings and/or ask to meet with a few of the people you've observed have made both positive and negative remarks about care and services within the facility.
PLEASE REMEMBER, YOU DON'T HAVE TO BE READY TO ENTER A FACILITY BEFORE CHECKING OUT A LONG TERM CARE FACILITY AND KEEPING YOUR FINGERS ON THE PULSE OF THE COMMUNITY.
Administration and even ownership changes; since this may be a place you entrust yourself to at a time when you may not be as capable, it's best to Plan Ahead.
Our Advice: We plan for our education and profession; we plan for our community involvement and choices in what organizations we belong to but we don't consider planning for how, where and why we'll live some of the most important time in our life, the time of most personal care need and the time of least ability to provide it for ourselves -- eventually
And, even if your goal is to remain and to pass "at home", your life may not follow that path of pre-determination. Protect yourself with a level of "insurance" we all deserve -- DIRECT AND CONTINUING KNOWLEDGE.
Wednesday, April 9, 2014
Thursday, April 3, 2014
Seven Websites For Families & Individuals
Last night my daughter and I attended a program sponsored by the local Alzheimer's Association and the not for profit company that managed Mom's care in the Skilled Nursing Unit where she lived for a little over two years and where she passed through this life.
Mixed feelings about the program in general and others I've attended through this company and the association.
The Marketing Director of the group of senior service providers mentioned this was the sixth in a series of presentations. We've attended about half. The take away is a grain of information but it keeps us informed as to the level of capability of both these groups and also to the pulse of the people faced with the challenges of growing older and those caring for a Senior.
Here's what we would teach individuals and families:
Lesson #1
All Dementias are not the same and they do not progress the same.
Here's one of many resources I've read for guidance. It's not totally up to date esp regarding Lewy Body Dementia as the citations do not report the rapid growth of the discovery of LBD in our aging population as our abilities to diagnose the varying forms of Dementia evolves: http://www.helpguide.org/elder/alzheimers_dementias_types.htm
Lesson #2
Even though there are is no exact way to distinguish among some Dementias (esp Frontal Temporal, Alzheimer's and Lewy Body Dementia), behaviours are based on brain function or dysfuntion and that is what should be the focus of providing care. Suggest you take a tour of the brain on the Alzheimer's Association website: http://www.alz.org/alzheimers_disease_4719.asp
Lesson #3
Those who are challenged by Dementia are human beings and deserve respect, care, consideration and understanding first and foremost.
Here's a link I just discovered from outside the United States, in English, that many facilities should read and follow more closely: http://www.dementiasa.org/advicesheets/english/Understanding%20and%20Respecting%20the%20person%20with%20dementia%20ENGLISH%20C.pdf
Dementia is a worldwide challenge and as more countries develop and populations age, it becomes an international challenge for human rights.
Lesson #4
Know your rights in a Nursing Facility. Here's a website I just "stumbled across" I wish I'd found prior to my Mom's death and prior to her entering the first facility.
Knowledge is power and this paper is worth reading all the way through, getting a copy for reference and ensuring you pass along this important information:
http://www.nsclc.org/wp-content/uploads/2011/02/20-Common-Problems-Nov-2010-Final.pdf
Lesson #5
The presenter of last night's program documented his wife's advancing Dementia. We believe you should also document any challenges or problems you witness or your loved one talks about or you observe.
Take notes, take pictures and take videos of your loved one who lives in a facility. If you see something happening that's questionable, document it. You may not have the right to photograph or video another resident but you can make notes including the name of the person whom you think has violated the rights of the resident, caused possible harm to their person or caused any type of neglect or abusive situation.
Review your loved one's rights in your State's Rules and Regulations for Skilled Nursing Facilities and if they have them, for Assisted Living and even Independent Living.
Suggest you start here if you live in the United States:
http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.htmlifhttp://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.html
Lesson 6:
Every Nursing Center should have both a Resident's Council AND a Family Council. Start a Family Council if there isn't one and learn your rights as a member at this website and the one above (which has a section on Family Councils): http://www.theconsumervoice.org/familymember/family-council center#Family_Council_Rights_and_Federal_Laws Regulations
Added Comment 4/08: The Nursing Home Reform Law of 1987 provides both resident councils and family councils become established in "Nursing Homes", places we now refer to as Skilled Nursing Facilities (SNF's) or Long Term Care Facilities. Here's a link through another good general website resource:
http://www.theconsumervoice.org/advocate/issueindex/archivedissues/obra
CHECK IT OUT: In Missouri, there is NO mention of a Family Council in the Rules and Regulations for Long Term Care/Skilled Nursing Facilities BUT there is a mention of Resident's Councils. How about your State? Care to share by letting us know what States mandate establishment or facilities that do have these councils?
Mixed feelings about the program in general and others I've attended through this company and the association.
The Marketing Director of the group of senior service providers mentioned this was the sixth in a series of presentations. We've attended about half. The take away is a grain of information but it keeps us informed as to the level of capability of both these groups and also to the pulse of the people faced with the challenges of growing older and those caring for a Senior.
Here's what we would teach individuals and families:
Lesson #1
All Dementias are not the same and they do not progress the same.
Here's one of many resources I've read for guidance. It's not totally up to date esp regarding Lewy Body Dementia as the citations do not report the rapid growth of the discovery of LBD in our aging population as our abilities to diagnose the varying forms of Dementia evolves: http://www.helpguide.org/elder/alzheimers_dementias_types.htm
Lesson #2
Even though there are is no exact way to distinguish among some Dementias (esp Frontal Temporal, Alzheimer's and Lewy Body Dementia), behaviours are based on brain function or dysfuntion and that is what should be the focus of providing care. Suggest you take a tour of the brain on the Alzheimer's Association website: http://www.alz.org/alzheimers_disease_4719.asp
Lesson #3
Those who are challenged by Dementia are human beings and deserve respect, care, consideration and understanding first and foremost.
Here's a link I just discovered from outside the United States, in English, that many facilities should read and follow more closely: http://www.dementiasa.org/advicesheets/english/Understanding%20and%20Respecting%20the%20person%20with%20dementia%20ENGLISH%20C.pdf
Dementia is a worldwide challenge and as more countries develop and populations age, it becomes an international challenge for human rights.
Lesson #4
Know your rights in a Nursing Facility. Here's a website I just "stumbled across" I wish I'd found prior to my Mom's death and prior to her entering the first facility.
Knowledge is power and this paper is worth reading all the way through, getting a copy for reference and ensuring you pass along this important information:
http://www.nsclc.org/wp-content/uploads/2011/02/20-Common-Problems-Nov-2010-Final.pdf
Lesson #5
The presenter of last night's program documented his wife's advancing Dementia. We believe you should also document any challenges or problems you witness or your loved one talks about or you observe.
Take notes, take pictures and take videos of your loved one who lives in a facility. If you see something happening that's questionable, document it. You may not have the right to photograph or video another resident but you can make notes including the name of the person whom you think has violated the rights of the resident, caused possible harm to their person or caused any type of neglect or abusive situation.
Review your loved one's rights in your State's Rules and Regulations for Skilled Nursing Facilities and if they have them, for Assisted Living and even Independent Living.
Suggest you start here if you live in the United States:
http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.htmlifhttp://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.html
Lesson 6:
Every Nursing Center should have both a Resident's Council AND a Family Council. Start a Family Council if there isn't one and learn your rights as a member at this website and the one above (which has a section on Family Councils): http://www.theconsumervoice.org/familymember/family-council center#Family_Council_Rights_and_Federal_Laws Regulations
Added Comment 4/08: The Nursing Home Reform Law of 1987 provides both resident councils and family councils become established in "Nursing Homes", places we now refer to as Skilled Nursing Facilities (SNF's) or Long Term Care Facilities. Here's a link through another good general website resource:
http://www.theconsumervoice.org/advocate/issueindex/archivedissues/obra
CHECK IT OUT: In Missouri, there is NO mention of a Family Council in the Rules and Regulations for Long Term Care/Skilled Nursing Facilities BUT there is a mention of Resident's Councils. How about your State? Care to share by letting us know what States mandate establishment or facilities that do have these councils?
Sunday, March 30, 2014
Website: NonPartisan Info Social Insurance including Long Term Care and Medicare
I'm constantly surfing the web and continuously surprised at what I find. Found this site that appears to be nonpartisan and not for profit and covers information on Social Security, Medicare, Worker's Compensation and Disability, Unemployment Insurance and Long Term Care.
Of particular interest to us are the areas of Medicare and Long Term Care as it applies to our current and future possible experiences but all these areas contain great information you'd have to go to several sites to retrieve in one convenient location. Published articles and citations including providers of support from various foundations in just a basic overview of the site leads me to believe this is a "gem" of a site for anyone who really wants in depth information, great overviews and insights and a constant resource for keeping up to date on what's happening in our society in areas we're all facing.
Admittedly, I've not explored this new site in depth I've connected at the end of this entry but from first impression see information that appears to be nonpartisan and nonbiased.
Also found selections very prevalent to my latest experience "volunteering" to participate in a study by a local Medical Facility/Educational Facility designed to "open discussion" or raise it to a higher level between the "older generation" in a family and the "children". It's the article on "self determination" you can access through
Second admission, I'm not exactly "thrilled" with the questionnaires I've been receiving nor with the way in which the program is progressing. Some questions I consider too personal and would welcome answering them if they weren't "me" specific but rather asked if I "believed" this or that was necessary, needed or wanted.
BUT, it has opened additional conversations about "life plans" among the three of us who I feel, at this time, I want involved in "making decisions and choices" especially when I no longer have that ability.
Witnessing how my Mom, with Lewy Body Dementia, could easily change, almost from day to day, her "choices" about who should/could make decisions or who she would trust -- hence our major problem with Julia and the woman's ability to use Undue Influence and get her hands on cash in our home -- I'm concerned about that possibility occurring again and causing hardships especially for my daughter as it did for me, as my Mom's only daughter.
So, I continue to search, to research, to plan, to try to understand and to encourage others to do the same.
If we want to have "personal choice" and "personal determination" we must be proactive and start early in life, even earlier than I'm starting, to understand the laws, the possible changes we can effect and the affects of studies and relationships. If we're fortunate to move forward into "stages" of life, we should understand the role we can play in self determination and effective directives that will, even with significant challenges, continue to provide a safety net surrounding the individual -- if that is what we believe we have, "the right to self determination".
I notice many readers of this blog from countries that may not provide this "right" and look forward to the day when you can join in this decision. I see others who live in countries we've seen as "more progressive" in providing choices and values for aging far beyond what we currently experience in the United States.
Conversations are welcome. We're still learning about blogs and how to make them more interactive and responsive. Now that our lives have changed to hopefully provide a little more "personal" time for "personal choices", we hope to progress with this blog to more interaction, more inclusion of resources and build greater awareness of not only Lewy Body Dementia but recognizing the choices we have when they're available and known.
In Mom's memory, we've determined to share our experiences with her Lewy Body Dementia, references to reliable and lesser known resources, like this website connection, and advisories on areas of life we seldom think about until we're in dire need of information.
Join us for A Continuing Celebration of Life journey.
Here's the site: http://www.nasi.org/ and here's a section I found particularly helpful regarding considerations most of us will have to make regarding care for ourselves or a loved one http://www.nasi.org/research/long-term-care
Friday, March 21, 2014
It's Friday and Mom's Passing Comes To Mind ... Again
Called the funeral parlor yesterday. Life got in the way and I'd not called back to re-request Mom's death certificate. Or was it having that final piece of paper in hand meant the passing of both my husband and my mother were factual. No denial. No setting aside. No pausing and thinking: "Have to go to the hospital" for him and "Have to go to the Nursing Home" for her.
Reality has set in. It's not something I dwell on. But as anyone who's lost a loved one will tell you, it's not a simple matter of "here today, gone tomorrow" acceptance and moving on almost as though nothing really happened.
It's a major life event and in my eyes and mind having gone through the death of one absent parent, my father, due to divorce and not seeing him for a long time, I believe the closer the relationship is, the harder the adjustment (if we call it that) is and the more it affects everything we do.
I'm strong, I tell myself. I'm a fighter. True. I've survived a great deal in life and am still in survival mode. But that was usually with one or both of these people in my life and even if I was upset with them, angry about something, disappointed or in any way feeling that relationship wasn't what I wanted or needed at the time, there was still a chance, THE chance, to go back, reconsider, restart, rewind -- with one or both of them. No more.
Mom passed on a Friday afternoon. I'm not sure I remember exactly what time. We'd stayed with her, in her room at "the facility", for two nights and were believing we faced the third and then saw great changes and a definite progression that meant Mom would soon be leaving this life.
The staff had finally moved her roommate, who was sleeping most of the time but still "present" and when awake often verbally and physically active and sometimes very negative and somewhat abusive to attendants. We made do with sleeping, daughter on a makeshift pallet on the floor and myself folding into the permanently reclining lift chair that had decided to quit working about a week before Mom passed.
Grateful not to be living through that time, again.
Looking back, thankful it was in January and not in March; Mom loved the Spring and looking forward to the flowers we had in the yard that would start blooming now and then climax in July with the bursting forth of the dozens of varied day lily plants of all sizes, shapes and colors we'd planted decades ago.
When she went into the facility, I made it a point to take her blooming plants when none were blooming outside and cuttings from the flowers we had blooming in the yard.
Even when she passed through the Lewy Body Dementia "stages" of not recognizing me or others, she still responded positively to the sight and smell of flowers. Now taking them to her is a major trip as her final wish was to be buried in a small cemetery in a town where she spent much of her childhood and close to the actual town where she was born. But I remember both Mom and my husband when the flowers bloom, when the snow comes and when so many other life joys return to remind me of past love and family.
Memories hurt. Memories heal. Time hurts and it heals. It's approaching three months for Mom and it's been a little over three years for my husband. Mom said when he passed, "It should have been me." She was so much more aware then even though she was deep into the progression of Lewy Body Dementia. That roller coaster ride was in the beginning stages although as we discovered, the LBD was not in the early stages.
Each stage for Mom was very lengthy and the really visual and continual and non ability to return "on course" characteristic of what we did see and know as LBD and remember pre LBD hit a relatively quick and fast decline -- about two weeks for the real physical/mental total downhill journey without any return to a previous level.
Sometimes I feel those who discover LBD earlier are more fortunate and sometimes I feel they suffer even more knowing what lies ahead.
Would I want to know if I had LBD? If it could be diagnosed when I was truly competent, I think I would. I'm far away from the time we think Mom started her actual battle with the disease but each day does move me closer in that direction. Lewy Body Dementia causes so much mistrust on the part of the person with the disease. That alone is frightening when thinking about the "self" and the possibility of having LBD.
Trust is a basis of my life with my daughter; it was my Mom's basis of life as well. Will I follow in Mom's shoes or will I succumb to something else? Is there ever a "good way" to pass through this life? My husband thought his father was blessed; Dad died in his sleep. But what do we really know about the end......
Reality has set in. It's not something I dwell on. But as anyone who's lost a loved one will tell you, it's not a simple matter of "here today, gone tomorrow" acceptance and moving on almost as though nothing really happened.
It's a major life event and in my eyes and mind having gone through the death of one absent parent, my father, due to divorce and not seeing him for a long time, I believe the closer the relationship is, the harder the adjustment (if we call it that) is and the more it affects everything we do.
I'm strong, I tell myself. I'm a fighter. True. I've survived a great deal in life and am still in survival mode. But that was usually with one or both of these people in my life and even if I was upset with them, angry about something, disappointed or in any way feeling that relationship wasn't what I wanted or needed at the time, there was still a chance, THE chance, to go back, reconsider, restart, rewind -- with one or both of them. No more.
Mom passed on a Friday afternoon. I'm not sure I remember exactly what time. We'd stayed with her, in her room at "the facility", for two nights and were believing we faced the third and then saw great changes and a definite progression that meant Mom would soon be leaving this life.
The staff had finally moved her roommate, who was sleeping most of the time but still "present" and when awake often verbally and physically active and sometimes very negative and somewhat abusive to attendants. We made do with sleeping, daughter on a makeshift pallet on the floor and myself folding into the permanently reclining lift chair that had decided to quit working about a week before Mom passed.
Grateful not to be living through that time, again.
Looking back, thankful it was in January and not in March; Mom loved the Spring and looking forward to the flowers we had in the yard that would start blooming now and then climax in July with the bursting forth of the dozens of varied day lily plants of all sizes, shapes and colors we'd planted decades ago.
When she went into the facility, I made it a point to take her blooming plants when none were blooming outside and cuttings from the flowers we had blooming in the yard.
Even when she passed through the Lewy Body Dementia "stages" of not recognizing me or others, she still responded positively to the sight and smell of flowers. Now taking them to her is a major trip as her final wish was to be buried in a small cemetery in a town where she spent much of her childhood and close to the actual town where she was born. But I remember both Mom and my husband when the flowers bloom, when the snow comes and when so many other life joys return to remind me of past love and family.
Memories hurt. Memories heal. Time hurts and it heals. It's approaching three months for Mom and it's been a little over three years for my husband. Mom said when he passed, "It should have been me." She was so much more aware then even though she was deep into the progression of Lewy Body Dementia. That roller coaster ride was in the beginning stages although as we discovered, the LBD was not in the early stages.
Each stage for Mom was very lengthy and the really visual and continual and non ability to return "on course" characteristic of what we did see and know as LBD and remember pre LBD hit a relatively quick and fast decline -- about two weeks for the real physical/mental total downhill journey without any return to a previous level.
Sometimes I feel those who discover LBD earlier are more fortunate and sometimes I feel they suffer even more knowing what lies ahead.
Would I want to know if I had LBD? If it could be diagnosed when I was truly competent, I think I would. I'm far away from the time we think Mom started her actual battle with the disease but each day does move me closer in that direction. Lewy Body Dementia causes so much mistrust on the part of the person with the disease. That alone is frightening when thinking about the "self" and the possibility of having LBD.
Trust is a basis of my life with my daughter; it was my Mom's basis of life as well. Will I follow in Mom's shoes or will I succumb to something else? Is there ever a "good way" to pass through this life? My husband thought his father was blessed; Dad died in his sleep. But what do we really know about the end......
Thursday, February 13, 2014
Insights:# 1 Dr Visits & Poor Hygiene in Long Term Care Facilities
Residents of Long Term Care Facilities are required to have a primary care physician affiliated with the facility. It's been our experience the list is short and often limited to not include a hospital of choice for additional services.
In the months preceding Mom's death, we became even more disappointed in the medical care from the physician "attending" Mom at her Skilled Nursing Center.
Rereading the "official" entry papers and "contract" just before her death we realized the facility Dr only had to see Mom (or any resident) once every two months.
Elderly men and women who often develop infections and catch strains of Flu and other often life threatening illnesses relegated to every 60 day "visits" doesn't seem to be a very sound medical decision. But that was Mom's facilities' practice, except, of course, when we wanted our "own" Dr and then we were mandated to have Mom seen every thirty days.
In the interim, i's up to the "Nursing decision" of the LPN on the floor and her/his personal "fear" of the "wrath" of the Dr as to whether he/she contacts his/her office for advice or just sets aside any potential medical concerns expressed by the resident or the family.
And we wonder at the high cost of Medicare and Medicaid? Why don't we realize as a society when we don't take action to ensure the safety and well being of these people, many of whom cannot express themselves and many who give up because no one wants to hear "another complaint" or "another problem" as it takes too much time and additional "person power" to resolve -- we're increasing the cost of Medicare and Medicaid.
I digress. We finally found what we thought was a Dr with whom we could communicate and who took the time to "counsel" when we did have interaction.
To get to that point, we endured being provided with lists that weren't current including Dr's who no longer were willing to come to Mom's facility; were no longer accepting new patients; were no longer adding Medicaid patients.
Doesn't it stand to reason if this list is obsolete many other records at the facility are questionable? None among us believes this is an "oversight" but rather that it's typical of the failure of SNC's to maintain accurate records.
ON CALL. My son, who was also a POA, in the last hours of his Grandmother's life, learned how this terminology at a Skilled Nursing Center simply means the Dr "may" be accepting phone calls. NO DR IS SCHEDULED TO BE AVAILABLE TO GO TO THE FACILITY. In fact, we were advised, as we often were, to take Mom to the Emergency Room if we didn't like the level of care the facility was providing.
ANOTHER DRAIN ON FUNDS PROVIDED BY YOUR TAXES AND MINE.
Common problems that should be prevented are escalating and causing those family members or in some cases the individuals to seek Emergency Room treatment to take care of Urinary Tract Infections that have gotten out of hand and gone into bladder or other infections and advanced to a point where they become Vanco or other medicines for treatment non receptive could easily be corrected through more demands by those of us "following" into these years to make legislative corrections today.
As a society, we should see how not only the over prescription of medications has caused a development of a new "strain" of resistant "bugs" to develop, but how the neglect to perform common, everyday functions of cleanliness have put our Elderly population in Nursing Facilities back about a hundred years or more into times before antibiotics and knowledge of how clean hands and a clean body prevents contracting some diseases and the spread of many.
Think about it. Long nails used to cleanse areas after urinating and defecating without ensuring the nails have been clipped or cleaned and then using the hands to eat, as is common with advancing Dementia.
Think about it. Giving a shower or two a week but neglecting to wash the hands or face or body of a person who's become incontinent or who cannot wash any part of their body without potentially misusing a piece of toilet paper they've used to wipe themselves with or even food placed in front of them -- thinking they have a washcloth in hand.
Think about it. Allowing Dentures to remain in someone's mouth without using a toothbrush and never a denture soak. Developing sores and eventually Thrush and other infections in the mouth.
Think about it. Failure to ensure toenails are clipped and clean causing potential loss of limbs due to set in of infections leading to gangrene.
Think about it. Clothing fouled by sitting in excrement thrown into the closet without encasing in a plastic bag and closing it. Resident is able to move around, resident has Dementia, resident pulls out clothing from bag and proceeds to dress themselves or use a pair of pants, complete with urine or fecal material to "wash" or "dry" themselves.
Attendants don't see this. Nursing staff doesn't check to see how personal hygiene is done by Attendants.
Who cares? Do you? Do you want to end your days this way? And, please don't think if you pay enough you won't; it's happening behind closed doors in some of the most "fashionable" and "costly" facilities.
That old song ..... "Nobody knows what does on behind closed doors."
In the months preceding Mom's death, we became even more disappointed in the medical care from the physician "attending" Mom at her Skilled Nursing Center.
Rereading the "official" entry papers and "contract" just before her death we realized the facility Dr only had to see Mom (or any resident) once every two months.
Elderly men and women who often develop infections and catch strains of Flu and other often life threatening illnesses relegated to every 60 day "visits" doesn't seem to be a very sound medical decision. But that was Mom's facilities' practice, except, of course, when we wanted our "own" Dr and then we were mandated to have Mom seen every thirty days.
In the interim, i's up to the "Nursing decision" of the LPN on the floor and her/his personal "fear" of the "wrath" of the Dr as to whether he/she contacts his/her office for advice or just sets aside any potential medical concerns expressed by the resident or the family.
And we wonder at the high cost of Medicare and Medicaid? Why don't we realize as a society when we don't take action to ensure the safety and well being of these people, many of whom cannot express themselves and many who give up because no one wants to hear "another complaint" or "another problem" as it takes too much time and additional "person power" to resolve -- we're increasing the cost of Medicare and Medicaid.
I digress. We finally found what we thought was a Dr with whom we could communicate and who took the time to "counsel" when we did have interaction.
To get to that point, we endured being provided with lists that weren't current including Dr's who no longer were willing to come to Mom's facility; were no longer accepting new patients; were no longer adding Medicaid patients.
Doesn't it stand to reason if this list is obsolete many other records at the facility are questionable? None among us believes this is an "oversight" but rather that it's typical of the failure of SNC's to maintain accurate records.
ON CALL. My son, who was also a POA, in the last hours of his Grandmother's life, learned how this terminology at a Skilled Nursing Center simply means the Dr "may" be accepting phone calls. NO DR IS SCHEDULED TO BE AVAILABLE TO GO TO THE FACILITY. In fact, we were advised, as we often were, to take Mom to the Emergency Room if we didn't like the level of care the facility was providing.
ANOTHER DRAIN ON FUNDS PROVIDED BY YOUR TAXES AND MINE.
Common problems that should be prevented are escalating and causing those family members or in some cases the individuals to seek Emergency Room treatment to take care of Urinary Tract Infections that have gotten out of hand and gone into bladder or other infections and advanced to a point where they become Vanco or other medicines for treatment non receptive could easily be corrected through more demands by those of us "following" into these years to make legislative corrections today.
As a society, we should see how not only the over prescription of medications has caused a development of a new "strain" of resistant "bugs" to develop, but how the neglect to perform common, everyday functions of cleanliness have put our Elderly population in Nursing Facilities back about a hundred years or more into times before antibiotics and knowledge of how clean hands and a clean body prevents contracting some diseases and the spread of many.
Think about it. Long nails used to cleanse areas after urinating and defecating without ensuring the nails have been clipped or cleaned and then using the hands to eat, as is common with advancing Dementia.
Think about it. Giving a shower or two a week but neglecting to wash the hands or face or body of a person who's become incontinent or who cannot wash any part of their body without potentially misusing a piece of toilet paper they've used to wipe themselves with or even food placed in front of them -- thinking they have a washcloth in hand.
Think about it. Allowing Dentures to remain in someone's mouth without using a toothbrush and never a denture soak. Developing sores and eventually Thrush and other infections in the mouth.
Think about it. Failure to ensure toenails are clipped and clean causing potential loss of limbs due to set in of infections leading to gangrene.
Think about it. Clothing fouled by sitting in excrement thrown into the closet without encasing in a plastic bag and closing it. Resident is able to move around, resident has Dementia, resident pulls out clothing from bag and proceeds to dress themselves or use a pair of pants, complete with urine or fecal material to "wash" or "dry" themselves.
Attendants don't see this. Nursing staff doesn't check to see how personal hygiene is done by Attendants.
Who cares? Do you? Do you want to end your days this way? And, please don't think if you pay enough you won't; it's happening behind closed doors in some of the most "fashionable" and "costly" facilities.
That old song ..... "Nobody knows what does on behind closed doors."
Sunday, February 9, 2014
Another Entry From Before Mom's Passing
This entry was begun on 12/21; just days before Christmas Eve and Mom's first "hint" we were possibly closer to the end than the beginning of her stay at her current facility.
Over the time I've been blogging, I've started several "drafts" and set them aside. Sometimes I read them and think I'm being too harsh, not objective enough, including too many "personal things" those who read this blog may not be interested in my sharing.
Now, with Mom's departure, I'm going back, rereading this and other communication I've had with family and friends and seeing with "new" eyes things I believe need to be shared or at least brought into the light.
Again, this was written well before Mom's behaviours and our observations began to see definitive changes, or "end of days" as we experienced in what was to be a very short time.
What do you do when those around you are focusing on "the end"?
If you're me, you analyze, research and remember you know Mom the best of anyone, even the other two POA's, your son and your daughter. But you value their insights and opinions and seek their counsel because we are family; we are Mom's caring family and have been for decades.
Sharing this responsibility has given them insight into aging they would not have had. It's meant for my one son, who lives cross country and travels internationally, the ability to continue his life knowing we have open and constant communication and we're here to ensure Mom/Grandma is given quality of life and she's cared for at a level of her needs and wants.
For my daughter who values a multi generational lifestyle, it's given her insight into the years down the road when she will be me and I will be my Mom.
So, there's that question about "the end" of life, that is. How do you know when it's really there? Internet and many resources including www.lbda.org and others give insights. But I've been taught to question, to look deeper, to ask more. It's a blessing and sometimes not.
My analytical side (scientific side) wants to know if the "observations" cited of behaviours as well as physical challenges are due to the disease or to actions taken in the course of the disase.
What would Mom want if she knew what was going on now in her life?
I reflect on many conversations she had about her Mom and how she felt about how she thought her mom was being treated; about sisters and brothers in SNC's and their treatment. About her own reflection on wishing she never had to go into a facility and believing the only time a person should be in one was when they didn't know where they were.
It seems we've crossed over from the time when Mom "came back" more easily from infections and neglect causing sores, cuts and even the need for stitches.
She's still on antibiotics and they play havoc with her body and her mind. Typical Lewy Body Dementia reaction.
And, that's the real challenge: What's "typical" of the disease stage and what's an accurate evaluation of progression. How "far back" will Mom be when this course of treatment ends? How soon will we see another infection?
Question: When Mom returned to the Skilled Nursing Center, she came back after having spent the last two days in isolation due to a Vacomyacin resistant type of infection.
At the SNC, they immediately returned her to her room complete with roommate who appears to be drugged most of the time (probably on Hospice) and "brought back" to consciousness to eat some meals.
Infections and diseases are rampant at the facility. Reminds me of the first hospital where my husband stayed. We finally "got smart" and realized we needed another medical facility and took him to the same hospital where we now take Mom.
They have a program of infectious disease control and practices that protect patients far better and should be more widely practiced by hospitals, Rehab facilities and especially Skilled Nursing Facilities.
STATEMENT: A resident of a Skilled Nursing Center is there for one reason in the State of Missouri: he/she has medical conditions needing 24/7 attention by a level of medical care determined by the State as allowing a minimum level of LPN supervision. (My personal opinion, they need RN staff; it shows when they try certain procedures or when more medical attention or observation is needed)
.
So many people see LBD as Alzheimer's and categorize it as being the same. It's definitely not and requires a higher level of accommodation. Interesting how we have "Alzheimer's Programs" and "Alzheimer's Units" but there's no "special treatment" let alone in many facilities there isn't even recognition of the disease as real Dementia.
Many people, professionals and the general public, see both as irreversible and as stages well defined. Not so.
We've walked this path and have been amazed at the cognitive level that can still exist -- even now.
Question #1: What effect do drugs currently chosen to change the behaviours of the elderly have on their physical and mental capacity?
If Mom reacts to pain from an infection or from someone's lack of care in moving her, should we "mask" this ability to recognize yet not fully communicate her objection or recognition?
Who are we serving by not addressing the real issue, the infection or the procedure?
Question #2: Is a series of medications to "ease" her transition into this "time in life" which others have said appears to be "the end stage" what she would want and how she would choose to live her "last days"?
While not a "self medicator", Mom valued medicine and the abilities it provided.
She doesn't want to be resuscitated but does that mean she gives us permission to "create" this situation through allowing "nature" to take its course and put her into a situation where infection takes over her body and causes functions to cease or actions to begin that intervene in the daily functioning of her body?
Question #3: Are we becoming a society that has redefined death as "OK" by whatever means once a certain age has been reached?
Haven't we gone that direction by saying someone is or is not a candidate for a medical procedure based on age? That is, of course, unless they have the financial means to procure the method withheld generally simply because if "we, the people" are paying for it, the cost at that age doesn't provide "productive results" and so why give, administer or provide?
It's necessary, you say? We may only have so much of something or so many to provide and must use this form of "control" to assure provision is where it can provide "results"? Perhaps this can be justified by need for an organ or other donation but should we be applying the same "medical reasoning/judgment" for more common procedures and medications let alone everyday treatment within a Skilled Nursing Facility and/or hospital or by a doctor or other medical person?
Question #4: Age is a criteria but what about life's value?
Saw a billboard the other day clearly advocating for the "right to life" of the unborn but it cited three age groups and a "beating heart" at 90, 25 and 13 days (these ages aren't accurate but approximate as cannot specifically remember) as being "life". That's one of the few times lately I've seen anything advocating for the "right to life" of someone in the most advanced years our current American population is experiencing.
You are among those who set the "rules" of life wherever you live.
How does your society, if you live outside the United States, treat the elderly, especially those who need assistance with daily living at advanced care giving levels -- feeding, toileting, dressing, moving from place to place, etc.?
Comments welcomed.
Over the time I've been blogging, I've started several "drafts" and set them aside. Sometimes I read them and think I'm being too harsh, not objective enough, including too many "personal things" those who read this blog may not be interested in my sharing.
Now, with Mom's departure, I'm going back, rereading this and other communication I've had with family and friends and seeing with "new" eyes things I believe need to be shared or at least brought into the light.
Again, this was written well before Mom's behaviours and our observations began to see definitive changes, or "end of days" as we experienced in what was to be a very short time.
What do you do when those around you are focusing on "the end"?
If you're me, you analyze, research and remember you know Mom the best of anyone, even the other two POA's, your son and your daughter. But you value their insights and opinions and seek their counsel because we are family; we are Mom's caring family and have been for decades.
Sharing this responsibility has given them insight into aging they would not have had. It's meant for my one son, who lives cross country and travels internationally, the ability to continue his life knowing we have open and constant communication and we're here to ensure Mom/Grandma is given quality of life and she's cared for at a level of her needs and wants.
For my daughter who values a multi generational lifestyle, it's given her insight into the years down the road when she will be me and I will be my Mom.
So, there's that question about "the end" of life, that is. How do you know when it's really there? Internet and many resources including www.lbda.org and others give insights. But I've been taught to question, to look deeper, to ask more. It's a blessing and sometimes not.
My analytical side (scientific side) wants to know if the "observations" cited of behaviours as well as physical challenges are due to the disease or to actions taken in the course of the disase.
What would Mom want if she knew what was going on now in her life?
I reflect on many conversations she had about her Mom and how she felt about how she thought her mom was being treated; about sisters and brothers in SNC's and their treatment. About her own reflection on wishing she never had to go into a facility and believing the only time a person should be in one was when they didn't know where they were.
It seems we've crossed over from the time when Mom "came back" more easily from infections and neglect causing sores, cuts and even the need for stitches.
She's still on antibiotics and they play havoc with her body and her mind. Typical Lewy Body Dementia reaction.
And, that's the real challenge: What's "typical" of the disease stage and what's an accurate evaluation of progression. How "far back" will Mom be when this course of treatment ends? How soon will we see another infection?
Question: When Mom returned to the Skilled Nursing Center, she came back after having spent the last two days in isolation due to a Vacomyacin resistant type of infection.
At the SNC, they immediately returned her to her room complete with roommate who appears to be drugged most of the time (probably on Hospice) and "brought back" to consciousness to eat some meals.
Infections and diseases are rampant at the facility. Reminds me of the first hospital where my husband stayed. We finally "got smart" and realized we needed another medical facility and took him to the same hospital where we now take Mom.
They have a program of infectious disease control and practices that protect patients far better and should be more widely practiced by hospitals, Rehab facilities and especially Skilled Nursing Facilities.
STATEMENT: A resident of a Skilled Nursing Center is there for one reason in the State of Missouri: he/she has medical conditions needing 24/7 attention by a level of medical care determined by the State as allowing a minimum level of LPN supervision. (My personal opinion, they need RN staff; it shows when they try certain procedures or when more medical attention or observation is needed)
.
So many people see LBD as Alzheimer's and categorize it as being the same. It's definitely not and requires a higher level of accommodation. Interesting how we have "Alzheimer's Programs" and "Alzheimer's Units" but there's no "special treatment" let alone in many facilities there isn't even recognition of the disease as real Dementia.
Many people, professionals and the general public, see both as irreversible and as stages well defined. Not so.
We've walked this path and have been amazed at the cognitive level that can still exist -- even now.
Question #1: What effect do drugs currently chosen to change the behaviours of the elderly have on their physical and mental capacity?
If Mom reacts to pain from an infection or from someone's lack of care in moving her, should we "mask" this ability to recognize yet not fully communicate her objection or recognition?
Who are we serving by not addressing the real issue, the infection or the procedure?
Question #2: Is a series of medications to "ease" her transition into this "time in life" which others have said appears to be "the end stage" what she would want and how she would choose to live her "last days"?
While not a "self medicator", Mom valued medicine and the abilities it provided.
She doesn't want to be resuscitated but does that mean she gives us permission to "create" this situation through allowing "nature" to take its course and put her into a situation where infection takes over her body and causes functions to cease or actions to begin that intervene in the daily functioning of her body?
Question #3: Are we becoming a society that has redefined death as "OK" by whatever means once a certain age has been reached?
Haven't we gone that direction by saying someone is or is not a candidate for a medical procedure based on age? That is, of course, unless they have the financial means to procure the method withheld generally simply because if "we, the people" are paying for it, the cost at that age doesn't provide "productive results" and so why give, administer or provide?
It's necessary, you say? We may only have so much of something or so many to provide and must use this form of "control" to assure provision is where it can provide "results"? Perhaps this can be justified by need for an organ or other donation but should we be applying the same "medical reasoning/judgment" for more common procedures and medications let alone everyday treatment within a Skilled Nursing Facility and/or hospital or by a doctor or other medical person?
Question #4: Age is a criteria but what about life's value?
Saw a billboard the other day clearly advocating for the "right to life" of the unborn but it cited three age groups and a "beating heart" at 90, 25 and 13 days (these ages aren't accurate but approximate as cannot specifically remember) as being "life". That's one of the few times lately I've seen anything advocating for the "right to life" of someone in the most advanced years our current American population is experiencing.
You are among those who set the "rules" of life wherever you live.
How does your society, if you live outside the United States, treat the elderly, especially those who need assistance with daily living at advanced care giving levels -- feeding, toileting, dressing, moving from place to place, etc.?
Comments welcomed.
Saturday, February 8, 2014
Another Year, Another Special State Investigation
Written after we held a small gathering, coffee and donuts at the facility to share Mom's life/leaving with residents and some staff we have considered caring and did help us with Mom's caregiving.
They're back.
Thick briefcases in hand.
Didn't realize it at the time as I caught a brief glimpse of a small gathering of women in the lobby of the facility and passing by on their way to set up yet another "office on site" to being yet another "investigation" of the facility.
Whispers turn into small waves of gossip -- they're here again. Staff become very visible; people move around and residents get more attention than they've had for many days and nights. It's yet another State Investigation.
And then they come. To pay their respects. People who were absent or not available or who just couldn't seem to "get it together" during many times we'd sought help in securing services at a level respecting the individual and human dignity.
They share our sorrow. Hard to believe from some. They're told we plan to continue to come. To visit others. To be there for them. The smile on some faces doesn't reflect in the eyes; is that concern? It should be. We're not silent and we don't believe in not questioning neglect or potential abuse.
Sad. Really. So many possibilities. We've sat with them even when Mom was dying and tried to explain how concerned we are; how valuable and necessary they are to the community they serve and to the community in general. Did we reach the right ears? Were they anyone who can do anything positive?
We'd thought so many times we'd met with the Administrator we were getting through. Some positive actions were taken. Some changes were made. Now, it's been almost a year and many functions are reverting to the low levels they'd been for so long and others are dropping below what they had become.
Why is it so difficult to run a caring and involved facility where accurate and good communication is the norm?
Why doesn't someone look beyond the dollars and cents and realize they will accomplish more by looking to those who really care and bringing their ideas and actions into everyday life at the facility -- residents, staff, family and friends.
Welcome your sharing comments about facilities that do provide caring, responsible and sharing facilities at the Skilled Nursing level.
Monday, February 3, 2014
End of Days: Who Decides?
Wrote this entry from my Mom's room at the Skilled Nursing Center but due to the imminent struggles we went through with staff and in trying to do what was best for Mom without any real concern by staff until the early morning hours of the last day I forgot I'd written anything during that most trying time.
We were called two nights ago and told by the floor Nurse Manager my Mom's death was imminent.
My daughter, who's a POA along with my son and myself, was called. I wasn't. He wasn't.
Reasons given? Motling, swelling of hands and feet, lethargy, additional confusion.
Reasons we had to find out ourselves. No one came to us. As always, we had to "seek and find" the "right person" who was "still on duty" who even knew what was really going on.
Mom had eaten half of lunch and a full breakfast; she hadn't eaten dinner/supper. Or so we were told.
The call came in at 6:44 PM.
We hadn't been able to visit Mom as we'd been doing on a daily basis since Saturday; this was Wednesday. Sunday a huge snowstorm, historical in its amount of snow dropped and followed by temperatures well below zero closed almost everything on Monday. Snowplows could not get through, icemelt was not working.
It was the strangest snowfall I can remember; so light it seemed to be like the kind they used to use in Hollywood picture making (we saw it one time on a trip to the Coast) for their winter scenes. The problem was exceptionally high winds blowing drifts and causing anything shoveled to be blown back in your face and onto everything but where you wanted it to go.
Last night was Night Two of our Vigil.
It's not my first time waiting for death. And, it's not my first time watching over someone who's dying.
Today marks the third anniversary of the burial of my husband. He died on January 5 and we said our final goodbyes on January 10.
The weather was quite different then. It was cold but not days of sub zero temperatures.
You didn't need to wear layers and layers and protect yourself with gloves and hats so your body wouldn't get frostbite.
Admit I lost it last night. Was it the "anniversary" drawing near?
Was it the reminders about the challenges we faced then with so many questionable medical decisions being made by "professionals" that led to his death and seem to be leading to Moms?
I believe it was and continues to be the failures of medical facilities to provide choices through providing accurate information and instead to make decisions for their patients and families.
Until I questioned procedures I'd observed in place.
Until I realized these procedures were in place.
Mom was denied food and water. It wasn't offered, it wasn't provided.
When I noticed no food or water was being brought into her room for her but a tray of "snacks" and drinks was provided for us, something inside of me felt a decision to "let her die" had been made by the facility.
I've seen it before here. I've felt it in the air.
I asked to see the notes regarding the call we received. Asked to see what Dr had determined Mom was "dying".
Just a few weeks before I'd asked the same question about Hospice when a call was received. The same Nurse Manager called and "suggested" it was time we did Hospice.
Mom's health had been declining. We'd seen the possibilities. We'd just been to the ER and a hospital admission. Daughter and I'd talked and we'd begun investigating services. We'd even talked with the Administrator of the facility.
We were told by Mom's facility they did not allow any outside Hospice Services to provide for anyone living in their locations. We had no choice, according to her.
NO CHOICE? NO MEDICAL CHOICES? No ability to determine Mom's medical care was provided by someone she or we as her POA's chose?
NO COUNSELING. Facility has a "new" Social Worker for the floor. Have we met her? NO. Has she "dropped in" to see how we're doing/how Mom's doing? Not while we've been here. Has she called? NO
WE CHOSE NOT TO ENTER INTO THE FACILITY'S HOSPICE PROGRAM SO NOW WE'RE BEING TREATED, IN MY OPINION, AS NOT AS VALUABLE AS THOSE WHO DO AND CERTAINLY NOT A "RETURN ON INVESTMENT".
There have been several deaths recently. It's the time of year; it's the weather; it's many with advanced age and advanced medical conditions. I get it.
What I don't get is how people who don't have family are dying alone. Surely they can see when someone who's been struggling with many challenges is losing more than winning their battles?
ISN'T THAT A VIOLATION OF MISSOURI STATE LAW, not to have the choice of which Hospice a family or individual wants to us?
After all, Rights of Individuals state residents have a right to choose their own Dr. Residents have a right to state their own wishes regarding End of Life care -- which, by the way, Mom did not want to be starved to death as it appears is being done; true, she didn't want IV feeding but days of not offering even a drop of water or a small amount of liquid was not her idea of a "good death".
So begins another day. What do I do? Do I simply sit and wait. Let the world go by and just "agree" with this NURSING JUDGEMENT? That's what we were told was done by the Nurse Manager, an LPN, by the way, not an RN and certainly not a DR.
Momma, for your sake and that of all of us coming after you, I will raise my voice to challenge current practices that appear to violate Senior's Rights.
You modeled how to care for family. You showed me women have rights even when you lost many of yours because you were a divorcee in a time when women's right to many things was totally dependent on being married.
I will hear your voice in my ear and stirring my soul to go forward.
We were called two nights ago and told by the floor Nurse Manager my Mom's death was imminent.
My daughter, who's a POA along with my son and myself, was called. I wasn't. He wasn't.
Reasons given? Motling, swelling of hands and feet, lethargy, additional confusion.
Reasons we had to find out ourselves. No one came to us. As always, we had to "seek and find" the "right person" who was "still on duty" who even knew what was really going on.
Mom had eaten half of lunch and a full breakfast; she hadn't eaten dinner/supper. Or so we were told.
The call came in at 6:44 PM.
We hadn't been able to visit Mom as we'd been doing on a daily basis since Saturday; this was Wednesday. Sunday a huge snowstorm, historical in its amount of snow dropped and followed by temperatures well below zero closed almost everything on Monday. Snowplows could not get through, icemelt was not working.
It was the strangest snowfall I can remember; so light it seemed to be like the kind they used to use in Hollywood picture making (we saw it one time on a trip to the Coast) for their winter scenes. The problem was exceptionally high winds blowing drifts and causing anything shoveled to be blown back in your face and onto everything but where you wanted it to go.
Last night was Night Two of our Vigil.
It's not my first time waiting for death. And, it's not my first time watching over someone who's dying.
Today marks the third anniversary of the burial of my husband. He died on January 5 and we said our final goodbyes on January 10.
The weather was quite different then. It was cold but not days of sub zero temperatures.
You didn't need to wear layers and layers and protect yourself with gloves and hats so your body wouldn't get frostbite.
Admit I lost it last night. Was it the "anniversary" drawing near?
Was it the reminders about the challenges we faced then with so many questionable medical decisions being made by "professionals" that led to his death and seem to be leading to Moms?
I believe it was and continues to be the failures of medical facilities to provide choices through providing accurate information and instead to make decisions for their patients and families.
Until I questioned procedures I'd observed in place.
Until I realized these procedures were in place.
Mom was denied food and water. It wasn't offered, it wasn't provided.
When I noticed no food or water was being brought into her room for her but a tray of "snacks" and drinks was provided for us, something inside of me felt a decision to "let her die" had been made by the facility.
I've seen it before here. I've felt it in the air.
I asked to see the notes regarding the call we received. Asked to see what Dr had determined Mom was "dying".
Just a few weeks before I'd asked the same question about Hospice when a call was received. The same Nurse Manager called and "suggested" it was time we did Hospice.
Mom's health had been declining. We'd seen the possibilities. We'd just been to the ER and a hospital admission. Daughter and I'd talked and we'd begun investigating services. We'd even talked with the Administrator of the facility.
We were told by Mom's facility they did not allow any outside Hospice Services to provide for anyone living in their locations. We had no choice, according to her.
NO CHOICE? NO MEDICAL CHOICES? No ability to determine Mom's medical care was provided by someone she or we as her POA's chose?
NO COUNSELING. Facility has a "new" Social Worker for the floor. Have we met her? NO. Has she "dropped in" to see how we're doing/how Mom's doing? Not while we've been here. Has she called? NO
WE CHOSE NOT TO ENTER INTO THE FACILITY'S HOSPICE PROGRAM SO NOW WE'RE BEING TREATED, IN MY OPINION, AS NOT AS VALUABLE AS THOSE WHO DO AND CERTAINLY NOT A "RETURN ON INVESTMENT".
There have been several deaths recently. It's the time of year; it's the weather; it's many with advanced age and advanced medical conditions. I get it.
What I don't get is how people who don't have family are dying alone. Surely they can see when someone who's been struggling with many challenges is losing more than winning their battles?
ISN'T THAT A VIOLATION OF MISSOURI STATE LAW, not to have the choice of which Hospice a family or individual wants to us?
After all, Rights of Individuals state residents have a right to choose their own Dr. Residents have a right to state their own wishes regarding End of Life care -- which, by the way, Mom did not want to be starved to death as it appears is being done; true, she didn't want IV feeding but days of not offering even a drop of water or a small amount of liquid was not her idea of a "good death".
So begins another day. What do I do? Do I simply sit and wait. Let the world go by and just "agree" with this NURSING JUDGEMENT? That's what we were told was done by the Nurse Manager, an LPN, by the way, not an RN and certainly not a DR.
Momma, for your sake and that of all of us coming after you, I will raise my voice to challenge current practices that appear to violate Senior's Rights.
You modeled how to care for family. You showed me women have rights even when you lost many of yours because you were a divorcee in a time when women's right to many things was totally dependent on being married.
I will hear your voice in my ear and stirring my soul to go forward.
Thursday, January 2, 2014
Lewy Body Dementia's Advancing; What Are The Right Choices? Part 2
Lewy Body Dementia is compared to a roller coaster ride.
I'd add it's more like the whole Carnival experience going on constantly and we're the people who walked through the gate into one sideshow, another specialty act and various thrill rides,as though in a Dream that's changing constantly and we have no control.
We don't pick and choose where in the Carnival of Lewy Body Dementia we're at, where we might be in a few minutes or where we might be if we turn around or look away for even a minute.
LBD is not predictable. Or at least it surely hasn't been for us.
On Christmas Eve we thought Mom's passing was imminent. We were told she hadn't eaten since earlier the day before. The facility had placed her in a Bariatric type chair and she was constantly sleeping. We tried to wake her for dinner but she couldn't be awakened.
We thought she'd been given something but her records didn't show any drugs.
She awoke only when being put to bed and then she screamed and cried and called "Mama, Mama, Mama".
When her brief was changed, we saw rawness and once again had to insist a better cream was used on her buttocks. There was no telling how long she was being allowed to sit in her urine and excrement.
We weighed the pain against the possibilities medications might drop the final curtain and decided to try a very small dose of a narcotic. It was the best decision. That and ensuring attention was paid to the perianal care she was receiving.
Isn't it against the law not to tend to someone's medical needs in an SNC? Yes. Of Course.
Report it. We have. Ombudsman makes a call or maybe stops by. Does it stop? Not really. If we have caring attendants, and there are some, it's better for Mom. If they're not, Mom bears the burden of what daughter and I consider to be neglect.
Why isn't something done about this? Several months ago the facility went through five days of "extensive" investigation by the State. Called before Christmas Eve and Mom's further decline and was told by the Hotline they were "interested" due to several reports.
Anything happen? Haven't seen anything. After all, we were in December; holidays were coming; surely this was something that could wait????
And so more challenges go to the bottom of the stack in the annals of Missouri's "investigating" Skilled Nursing Faciliites. Or so it seems.
Death doesn't take a holiday. Two more passed before Mom started another LBD advancement. A lady in an adjacent room is also following the same pattern as Mom; she's always sleeping her husband says; can't get her to eat, he says
How's Mom a week later? She had a "recovery", being able to communicate and the day after Christmas really started to eat and seemed to be "coming around". Wonderful story to share in the next entry that will live long after Mom in our hearts.
Well, Mama, you made it into 2014. It's the year that marks 100 years from your birth in 1914. At times you've told me recently you celebrated your 100th birthday earlier in the year of 2013. If that gives you joy, that's fine. You've always said we never know when our time is coming and as always, you've erred on the side of not being overly hopeful and always simply accepting what life hands out and so you said at your 99th birthday how next year would be your 100th --- if you made it that far.
Mom seems to be in three day cycles: one day not good, one day seeming to be coming back, one day seeming to be "with it" and participating including some communication and ability to eat and use a straw (a skillset we thought might be lost as putting one in her mouth and telling her what it is didn't provide any action or results Christmas day but did the day after).
She's still very strong, though. Unbelievably so. I received a personal demonstration a couple of nights ago. More on that in my next entry.
The merry-go-round appears to be slowing, the hills on the roller coaster seem to be moving towards the final exit. The riders are controlled by the ride and can only hang on and go with the flow.
I'd add it's more like the whole Carnival experience going on constantly and we're the people who walked through the gate into one sideshow, another specialty act and various thrill rides,as though in a Dream that's changing constantly and we have no control.
We don't pick and choose where in the Carnival of Lewy Body Dementia we're at, where we might be in a few minutes or where we might be if we turn around or look away for even a minute.
LBD is not predictable. Or at least it surely hasn't been for us.
On Christmas Eve we thought Mom's passing was imminent. We were told she hadn't eaten since earlier the day before. The facility had placed her in a Bariatric type chair and she was constantly sleeping. We tried to wake her for dinner but she couldn't be awakened.
We thought she'd been given something but her records didn't show any drugs.
She awoke only when being put to bed and then she screamed and cried and called "Mama, Mama, Mama".
When her brief was changed, we saw rawness and once again had to insist a better cream was used on her buttocks. There was no telling how long she was being allowed to sit in her urine and excrement.
We weighed the pain against the possibilities medications might drop the final curtain and decided to try a very small dose of a narcotic. It was the best decision. That and ensuring attention was paid to the perianal care she was receiving.
Isn't it against the law not to tend to someone's medical needs in an SNC? Yes. Of Course.
Report it. We have. Ombudsman makes a call or maybe stops by. Does it stop? Not really. If we have caring attendants, and there are some, it's better for Mom. If they're not, Mom bears the burden of what daughter and I consider to be neglect.
Why isn't something done about this? Several months ago the facility went through five days of "extensive" investigation by the State. Called before Christmas Eve and Mom's further decline and was told by the Hotline they were "interested" due to several reports.
Anything happen? Haven't seen anything. After all, we were in December; holidays were coming; surely this was something that could wait????
And so more challenges go to the bottom of the stack in the annals of Missouri's "investigating" Skilled Nursing Faciliites. Or so it seems.
Death doesn't take a holiday. Two more passed before Mom started another LBD advancement. A lady in an adjacent room is also following the same pattern as Mom; she's always sleeping her husband says; can't get her to eat, he says
How's Mom a week later? She had a "recovery", being able to communicate and the day after Christmas really started to eat and seemed to be "coming around". Wonderful story to share in the next entry that will live long after Mom in our hearts.
Well, Mama, you made it into 2014. It's the year that marks 100 years from your birth in 1914. At times you've told me recently you celebrated your 100th birthday earlier in the year of 2013. If that gives you joy, that's fine. You've always said we never know when our time is coming and as always, you've erred on the side of not being overly hopeful and always simply accepting what life hands out and so you said at your 99th birthday how next year would be your 100th --- if you made it that far.
Mom seems to be in three day cycles: one day not good, one day seeming to be coming back, one day seeming to be "with it" and participating including some communication and ability to eat and use a straw (a skillset we thought might be lost as putting one in her mouth and telling her what it is didn't provide any action or results Christmas day but did the day after).
She's still very strong, though. Unbelievably so. I received a personal demonstration a couple of nights ago. More on that in my next entry.
The merry-go-round appears to be slowing, the hills on the roller coaster seem to be moving towards the final exit. The riders are controlled by the ride and can only hang on and go with the flow.
Sunday, October 6, 2013
Joy's Comment & Remember October Is LBD Awareness Month
Thank you, Joy, for your comment.
Just knowing people are out there reading our story is so uplifting.
I'm working on ways to make it more informational. It's been a learning experience and I'm growing each day towards a better blog.
I've mentioned, I believe, my husband's passing in 2011. Well, each fifth of the month I still feel the challenges of his loss and wonder what I could have done differently especially when I did not see what was being done by Julia towards my Mother.
It's a continuing journey, from the fifth to the tenth of the month, from the date of his death until the date of his funeral. Yes, it's grief, but as my daughter points out, it's also comparable to Post Traumatic Stress Disorder due to the many destructive efforts of Julia then and what she's doing even now with Mom.
Julia stood by from February 2010 until late October 2010 and watched at different times as my husband received Home Health Care. Julia was/is a Registered Nurse. Julia had to see the gravity of the medical situation from being around our family for so many months. Julia knew we were holding on day by day and often hour by hour; I have emails we exchanged I read again and again and see now more clearly how the information I shared with her about our challenges gave her what she used to abuse Mom then and now.
It sounds strange, I know, but I guess my hope we could overcome my husband's many challenges was stronger than my ability to see what was going on around me with my husband and with my mother.
I am grateful my mother taught me to always keep moving towards the light and what is right in life. She taught me not to give in, never to give up and always to believe the path I'm on will lead somewhere positive. It isn't what she said, actually, it's how she lived her life, how she modeled life for me.
We found out in March 2012 after overcoming great challenges I've detailed and am still listing in this blog that Mom had late Mid to early Late stage Lewy Body Dementia. An RN specializing in taking care of Alzheimer's and Dementia men and women as a caregiver would surely have recognized the Dementia. We believe Julia knew, we know she constantly told us there was no concern and that Mom was "perfectly all right; very good for her age compared to others" to gain financially and profit personally from controlling and manipulating others.
Julia's strategy isn't working. We have the advantage even in trying times.
October is Lewy Body Awareness Month. Please share the message that Dementia in all its forms and especially LBD is a devastating disease that often masquerades as reactions to medicines, other illnesses and even changes in life as we experienced. LBD must be taken seriously; I still hear in my inner ear the words of a Missouri Department of Health and Senior Services Adult Protective Worker who even has a Masters in Gerontology: "If it isn't Alzheimer's, it isn't Dementia." Please visit: www.lbda.org
Just knowing people are out there reading our story is so uplifting.
I'm working on ways to make it more informational. It's been a learning experience and I'm growing each day towards a better blog.
I've mentioned, I believe, my husband's passing in 2011. Well, each fifth of the month I still feel the challenges of his loss and wonder what I could have done differently especially when I did not see what was being done by Julia towards my Mother.
It's a continuing journey, from the fifth to the tenth of the month, from the date of his death until the date of his funeral. Yes, it's grief, but as my daughter points out, it's also comparable to Post Traumatic Stress Disorder due to the many destructive efforts of Julia then and what she's doing even now with Mom.
Julia stood by from February 2010 until late October 2010 and watched at different times as my husband received Home Health Care. Julia was/is a Registered Nurse. Julia had to see the gravity of the medical situation from being around our family for so many months. Julia knew we were holding on day by day and often hour by hour; I have emails we exchanged I read again and again and see now more clearly how the information I shared with her about our challenges gave her what she used to abuse Mom then and now.
It sounds strange, I know, but I guess my hope we could overcome my husband's many challenges was stronger than my ability to see what was going on around me with my husband and with my mother.
I am grateful my mother taught me to always keep moving towards the light and what is right in life. She taught me not to give in, never to give up and always to believe the path I'm on will lead somewhere positive. It isn't what she said, actually, it's how she lived her life, how she modeled life for me.
We found out in March 2012 after overcoming great challenges I've detailed and am still listing in this blog that Mom had late Mid to early Late stage Lewy Body Dementia. An RN specializing in taking care of Alzheimer's and Dementia men and women as a caregiver would surely have recognized the Dementia. We believe Julia knew, we know she constantly told us there was no concern and that Mom was "perfectly all right; very good for her age compared to others" to gain financially and profit personally from controlling and manipulating others.
Julia's strategy isn't working. We have the advantage even in trying times.
October is Lewy Body Awareness Month. Please share the message that Dementia in all its forms and especially LBD is a devastating disease that often masquerades as reactions to medicines, other illnesses and even changes in life as we experienced. LBD must be taken seriously; I still hear in my inner ear the words of a Missouri Department of Health and Senior Services Adult Protective Worker who even has a Masters in Gerontology: "If it isn't Alzheimer's, it isn't Dementia." Please visit: www.lbda.org
Tuesday, September 10, 2013
October: A Month To Remember: Requesting Maria Schriver To Report On LBD
Please forward this entry to as many people as possible. We all know the power of the Internet. Please use this power to gain recognition for Lewy Body Dementia!
This past week NBC's Today Show focused on Alzheimer's and devoted four days to special presentations on the disease.
Maria Schriver was a main presenter. As a well known personality, born into a highly recognizable family and having experienced coping with Alzheimer's, she is in a position of high visibility and her achievements in media can greatly benefit awareness of Dementia as THE disease, not just Alzheimer's.
Dementia is like Cancer once was: Often not talked about, very little known about, consisting of varying types with some having greater advocacy and some types thought of as more "devastating".
The Brain is the New Frontier. Before the CT and MRI, we had no means to see inside the body or the brain. Even now, age and related medical challenges may deter the ability to gain information in these ways.
Misdiagnosis of the type of Dementia and even greater numbers of individuals with undiagnosed Dementia are causes for great concern.
American Society must change its viewpoint of mental challenges, Dementia included. More Geriatric specialists are greatly needed and not just Doctors; Nurse Practitioners and RN's with this specialty are greatly needed. More in depth training of CNA's and those providing the basic quality of life daily care procedures is critical; they are the ones who often have first exposure to changing/changed or shifts, in physical and/or mental abilities.
Long Term Care Facilities with medical staff including Doctors aligned with the facilities must be required to evaluate accurately and thoroughly Senior medical conditions including the different forms of Dementia.
Continuing and ongoing education requirements for all types of Dementia should be more in depth, more current and inclusive within the medical community.
More educational opportunities for family members and caregivers of residents within Long Term Care facilities concerning Dementia and other medical and social challenges faced by residents should be required.
Unlike Cancer or Heart Disease, Brain Diseases affect an area of our body most people believe should be "controllable" and when not, something to be thankful for not having or seeking a pharmacological way to "handle and control" the "problem".
We believe knowledge is power.
Prominent people like Ms Schriver raising their voices for Dementia as a collective disease of many types, all requiring understanding and medical action, is critical to managing this devastating challenge undermining the quality of life of those suffering with the disease of Dementia.
Dementia breaks apart families, many of whom have members who simply do not understand the variations and challenges of different types of the disease.
Few people understand the differences between Alzheimer's and Lewy Body Dementia and how LBD can radically fluctuate; LBD has often been compared to a roller coaster ride.
Make October A Month To Remember
Lewy Body Dementia
Affects More Than 1.3 million families
With accurate diagnosis and reevaluation of those diagnosed with Alzheimer's, we believe LBD numbers of affected individuals and families will grow greatly.
Visit http://www.lbda.org/ to learn more
As a beginning, Ms Schriver, my daughter and I hope you choose to continue to educate everyone through the power of public media this October with more specialized NBC programming on Lewy Body Dementia.
Wednesday, August 14, 2013
Mom's 99th Birthday: A Showcase for Mom's Many Faces of LBD
Mom's moods change frequently. Often she's completely different in her behaviour and abilities within one visit. Sometimes it's not even the length of time spent (longer or shorter time frames) when we're "introduced" to the Many Faces of LBD.
She turned 99. A major birthday. We often used to tease one another about advancing birthdays saying some we wanted to reverse (when the second number was smaller than the first, like turning 42 into 24), the ones you didn't want to reverse because they made you older, like being 45 and a reversal would be 54. And, then there were the "irreversible" doubles of a number like 44, 55 and now for Mom, 99.
Mom's mood swings can be many and can occur all within one visit. In what we now know were the much earlier stages of LBD, Mom would show one of these "faces" and we attributed her behaviours to not getting enough sleep, having an infection or other physical challenge or simply just believing like everyone else she had her "good" days and her "not so good" days. After all, everyone said, she is getting "very elderly".
We were not seeing advancing Lewy Body Dementia because we'd never heard about LBD and Mom's actions certainly were not "typical" AZ and therefore not Alzheimer's, the only form of Dementia anyone seems to acknowledge or recognizes.
Then, too, we had the appearance of Julia Hed....into our lives and what we experienced as financial abuse, emotional abuse and undue influence taking advantage of Mom's condition, her loss of Executive abilities, that function of the brain to make decisions, to rationalize, to consider, to compare. contrast and arrive at decisions based on analytical processes.
Julia isn't and wasn't the only person who cannot see the forest for the trees as an old saying goes. As I continue to advocate for Lewy Body Dementia awareness, I rarely find anyone who's heard about LBD and most people have no idea there are many forms of Dementia.
We even had a Department of Health and Senior Services Adult Protective Worker, a young man, with a Masters in Geriatrics, tell us if Mom didn't have Alzheimer's, she didn't really have Dementia.
Ignorance. It drives our society into problems and situations costing the loss of individual freedom, family relationships and significant unnecessary financial increases and expenditures. Ignorance that's taught at even the higher levels of our educational systems, apparently.
Mom's face including her eyes, mouth and even her posture and body language are involved in these Faces of LBD. It's like watching a character actor or being in an acting class watching someone who's told to portray various feelings using words and body language. Only there's often no ability to immediately stop the action as is typical in a class or with someone who has the ability to work through feelings and emotions by talking them through.
Like so many other human actions and emotions, it's not always easy to see what a person might do or say as sometimes the same postures, facial expressions or even language might trigger one response OR another. It's difficult to anticipate when a delusion is going to come forward into a sometimes otherwise common, everyday conversation.
Sometimes, out of nowhere Mom says something like she did the other day, "Did you know I'm getting married again? Do you know to who? To XXXX's Boss. He called the other day." Then she goes into a short story that's somewhat disconnected, somewhat blurred in content but still has elements of a storyline.
I did notice XXXX's "Boss" (XXXX being my son) has been mentioned before in Mom's delusional conversations. He's been someone who's commented on how valuable XXXX is to the company. Of course, that was and is because my son is "saving the world" -- but that's another story involving how he travels so much because he's working for our government, etc. Far from reality but somehow a part of Mom's repertoire of storylines. She has many. They seem to develop and change as frequently as Julia Hed.....visits. Connectivity?
The ability to rationalize, reason and analyze can appear at times but it's no longer accessible through suggesting these methods be employed or through the individual being told to use these skills and methods. The times of these "skillsets" being used and applied seem to have completely disappeared.
Here's a brief synopsis of observations on her birthday when my daughter, one son and I spent time with Mom at her facility and took her out to dinner in a restaurant we thought she'd enjoy:
JOY: In times past, seeing, hearing or the mention of a person's name elicited a smile and body language of welcoming and happiness. This time, verbally telling Mom her grandson had come to visit, making a stop on his way flying to another city on business, clearly did not register the first or second time I told her. His coming close, bending down and talking to her also took several minutes before she realized what we were saying and who was visiting. Then she was "lit up like a Christmas tree" and of course, wanted to immediately see her great grandchildren asking where they were in the room. They, of course, could not come.
EMOTIONAL VARIATIONS AND SENSE OF CONTROL AND SITUATION: Mom laughed and cried that day as she has on others often moving from one emotion to the next simply with another thought coming forward and then another. When she goes into these Mood Swings, it's very difficult to redirect her. Sometimes I've learned it's best to say I have to leave, take my things, go out the door of the room, wait about five minutes, reenter as though I'm just arriving and this can break the downward spiral she's entered.
DEXTERITY IN COMMON MOTIONS NOT FREQUENTLY USED: Loss of motion and ability to sequence have been evident for some time. I've written about Mom's inability to move her legs and her brain sending messages her body does not respond to.
Watching her handle a wrapped birthday gift, something she'd done for many years (wrapping and unwrapping) I saw her brain struggling to function with deciding what to do, how to do it and what to do next.
She looked at the package and admired it verbally but didn't understand it was to be opened. When asked to open it, she didn't know how and did the common LBD response of "I don't know where to start" and laughing. LBD, in my experience, is full of deceptions, practiced and perhaps simply another part of the survival instinct part of the brain coming forward.
Placing her hand on the package did not stimulate the thought process for the procedure. Helping her by tearing off a piece (demonstrating the desired action) resulted in her being happy to see the package being opened but not the response even some children make when this demonstration is given of grabbing and tearing apart the package themselves.
Placing her hand in mine and helping her tear also didn't work. I finally gently took her hand in mind, we grabbed a small area and tore a long piece and repeated this procedure two or three times. Then I replaced her hand on the package and she felt for a piece and slowly peeled it away.
Interesting. A birthday package. Usually a delight in finding out what's inside and can't wait to open it now becomes a visual and physical challenge; something unfamiliar as a daily routine but something known to have been done before but that putting the information together and accessing the correct action/response is now becoming more challenging.
VISUAL STIMULATION. We chose a restaurant that wasn't too dark or too bright and where we knew the background music and level of "patronage" noise would not be high. We avoided choosing a restaurant with a bar directly within the restaurant area. We went early; Mom's used to eating around 5 PM and we felt arriving close to 4:30 would allow us some time to get settled, make choices and be almost finished before more guests arrived. Thankfully, her actual birthday wasn't on a weekend this year so that also helped.
CHOICES: We've found using two choices at most works best with food and clothing. This time we decided to do a "family meal" which provided two entrees. We wanted Mom to be involved as much as possible so we asked her if she would like "A" entrée or "B" entrée -- when actually both would be provided. In this way, she had a choice and we had less challenges; we also were seeking to cut costs as this past almost three years since my husband's death and the almost total rupture and tearing apart of our lives financially (especially with the complications of Julia Hed......'s accusing me of financial and emotional abuse, tearing Mom from our home and causing my bank accounts to be closed; see writings on JH and Abused Family.
SELF FEEDING: Mom can still feed herself most of the time. She often reverts now to treating everything she eats as "finger food" but at least she's still capable of remembering this activity. This night, though, perhaps because she wasn't in the facility and her brain "recognized" being in a restaurant, I notice Mom is using her soup spoon to eat (we cut everything up and provide small portions on her plate so she can push it around with a piece of bread and into her spoon) and she's doing fairly well. Of course we've asked for another cloth napkin and put it on her front and one on her lap because with her shaking of her hand she uses to feed herself, food inevitably lands on her front or in her lap. I see my Mom somewhat as she used to be in social situations. She's not carrying on a conversation, her dining skills are greatly affected by her physical limitations BUT she's seeming to take in a little about her surroundings and even makes a comment about being glad to be back and how she's enjoyed dining there in the past.
RANGE OF MOTION. We work through the challenges of moving Mom from her wheelchair to the car and from the car to the wheelchair. For some reason, getting out is easier usually than getting in. Guess it's because she's coming forward into something she recognizes and is familiar with while getting into a car is a skill set she uses less frequently.
I discovered a way we can usually get her into the car and sometimes it even works when we or the facility has difficulty moving her from her wheelchair to the toilet or from her wheelchair to her lift chair. I can't remember how the idea came about but I asked Mom to put her one hand on my shoulder and the other around my waist and "DANCE" with me.
For Mom's generation and for many of us, dancing together as a couple is partly learned and partly instinctual. It's a learned skill involving various brain activity and apparently this functionality remains for Mom.
What's interesting is sometimes when her feet won't move (Mom says her shoes stick to the floor/ground but we know it's the brain/body message sending/receiving that's not functioning) using this directive of "Let's Dance, Mom" and putting her hand on my shoulder and the other around my waist keys her brain/body to move and allows us to position Mom so we can turn her body around and sit her down in the front seat of the car or on the toilet or in her lift chair.
LAUGHTER AND TEARS. During our visit Mom laughs a lot. Many times she's "grinning" but her eyes seem to be not exactly where we are; perhaps she's fantasizing about the moment in ways we cannot see through our eyes.
Her mind wanders so much; changes onto so many subjects; it's when she thinks of something sad or that concerns her we find she can begin to become emotional and sometimes the escalation is into sobs and lots of tears. But this can often end almost as abruptly as it begins. Again, it's like being with a small child. What we used to refer to as "tantrums" in children, "unreasonable actions" and more appear more frequently. Interesting how we look at these in children's behaviours as "choices" -- wonder if they really are????
Some of the tears are most probably because my son will be leaving and his visit is so short and they're, not of his choosing but because of the distance, so infrequent and she misses him. Mom lived with us all the years of all of our children's young lives and through their college years and beyond. She's been a close part of their lives for more than a third of her own life. Of course she's moved to cry when her mind thinks of his leaving. What's more difficult is that like a small child she can be somewhat inconsolable because she, too, doesn't have that concept of time -- there will be another time when the can be together, a time to talk on the phone, etc.
However, my son does not really understand Mom also realizes her "time" is becoming shorter and shorter and therefore her feelings of "losing him" and us is a valid feeling and one that is difficult to work through because she does not have the "Executive function" of her brain, she does not have the ability to reason on our level.
How much we can learn from Early Childhood research if we would just realize the similarities in working with children at various ages and stages and with the elderly as they move through the various phases of Dementia, Lewy Body and others.
CELEBRATE LIFE with the ones you love. Make Memories To Last A Lifetime.
Even when the one you love cannot retain the times spent together, the ways in which you provide and care about them; even when they tell you or others "no one cares about me", take strength in knowing you are providing Love, Care, Compassion, Concern and above all else, you are serving as their Advocate and ensuring their quality of life is far better than if you walked away, infrequently called, occasionally visited and simply "moved on" believing your loved one didn't even know you were there or because they told you to "go away" or "you're not my daughter/son/ etc".
I've been there. It's frequent territory with Mom's ever advancing Lewy Body Dementia. Many days are not easy. Some days seem impossible. I just have to keep telling myself those days pass as the others do and in the end I have all those days I've been able to share, time I've been able to spend with Mom and I will cope and survive and thrive.
I will share with others my journey and I will find a way to enable others who will walk this same road to understand LBD through this blog and other advocacy.
She turned 99. A major birthday. We often used to tease one another about advancing birthdays saying some we wanted to reverse (when the second number was smaller than the first, like turning 42 into 24), the ones you didn't want to reverse because they made you older, like being 45 and a reversal would be 54. And, then there were the "irreversible" doubles of a number like 44, 55 and now for Mom, 99.
Mom's mood swings can be many and can occur all within one visit. In what we now know were the much earlier stages of LBD, Mom would show one of these "faces" and we attributed her behaviours to not getting enough sleep, having an infection or other physical challenge or simply just believing like everyone else she had her "good" days and her "not so good" days. After all, everyone said, she is getting "very elderly".
We were not seeing advancing Lewy Body Dementia because we'd never heard about LBD and Mom's actions certainly were not "typical" AZ and therefore not Alzheimer's, the only form of Dementia anyone seems to acknowledge or recognizes.
Then, too, we had the appearance of Julia Hed....into our lives and what we experienced as financial abuse, emotional abuse and undue influence taking advantage of Mom's condition, her loss of Executive abilities, that function of the brain to make decisions, to rationalize, to consider, to compare. contrast and arrive at decisions based on analytical processes.
Julia isn't and wasn't the only person who cannot see the forest for the trees as an old saying goes. As I continue to advocate for Lewy Body Dementia awareness, I rarely find anyone who's heard about LBD and most people have no idea there are many forms of Dementia.
We even had a Department of Health and Senior Services Adult Protective Worker, a young man, with a Masters in Geriatrics, tell us if Mom didn't have Alzheimer's, she didn't really have Dementia.
Ignorance. It drives our society into problems and situations costing the loss of individual freedom, family relationships and significant unnecessary financial increases and expenditures. Ignorance that's taught at even the higher levels of our educational systems, apparently.
Mom's face including her eyes, mouth and even her posture and body language are involved in these Faces of LBD. It's like watching a character actor or being in an acting class watching someone who's told to portray various feelings using words and body language. Only there's often no ability to immediately stop the action as is typical in a class or with someone who has the ability to work through feelings and emotions by talking them through.
Like so many other human actions and emotions, it's not always easy to see what a person might do or say as sometimes the same postures, facial expressions or even language might trigger one response OR another. It's difficult to anticipate when a delusion is going to come forward into a sometimes otherwise common, everyday conversation.
Sometimes, out of nowhere Mom says something like she did the other day, "Did you know I'm getting married again? Do you know to who? To XXXX's Boss. He called the other day." Then she goes into a short story that's somewhat disconnected, somewhat blurred in content but still has elements of a storyline.
I did notice XXXX's "Boss" (XXXX being my son) has been mentioned before in Mom's delusional conversations. He's been someone who's commented on how valuable XXXX is to the company. Of course, that was and is because my son is "saving the world" -- but that's another story involving how he travels so much because he's working for our government, etc. Far from reality but somehow a part of Mom's repertoire of storylines. She has many. They seem to develop and change as frequently as Julia Hed.....visits. Connectivity?
The ability to rationalize, reason and analyze can appear at times but it's no longer accessible through suggesting these methods be employed or through the individual being told to use these skills and methods. The times of these "skillsets" being used and applied seem to have completely disappeared.
Here's a brief synopsis of observations on her birthday when my daughter, one son and I spent time with Mom at her facility and took her out to dinner in a restaurant we thought she'd enjoy:
JOY: In times past, seeing, hearing or the mention of a person's name elicited a smile and body language of welcoming and happiness. This time, verbally telling Mom her grandson had come to visit, making a stop on his way flying to another city on business, clearly did not register the first or second time I told her. His coming close, bending down and talking to her also took several minutes before she realized what we were saying and who was visiting. Then she was "lit up like a Christmas tree" and of course, wanted to immediately see her great grandchildren asking where they were in the room. They, of course, could not come.
EMOTIONAL VARIATIONS AND SENSE OF CONTROL AND SITUATION: Mom laughed and cried that day as she has on others often moving from one emotion to the next simply with another thought coming forward and then another. When she goes into these Mood Swings, it's very difficult to redirect her. Sometimes I've learned it's best to say I have to leave, take my things, go out the door of the room, wait about five minutes, reenter as though I'm just arriving and this can break the downward spiral she's entered.
DEXTERITY IN COMMON MOTIONS NOT FREQUENTLY USED: Loss of motion and ability to sequence have been evident for some time. I've written about Mom's inability to move her legs and her brain sending messages her body does not respond to.
Watching her handle a wrapped birthday gift, something she'd done for many years (wrapping and unwrapping) I saw her brain struggling to function with deciding what to do, how to do it and what to do next.
She looked at the package and admired it verbally but didn't understand it was to be opened. When asked to open it, she didn't know how and did the common LBD response of "I don't know where to start" and laughing. LBD, in my experience, is full of deceptions, practiced and perhaps simply another part of the survival instinct part of the brain coming forward.
Placing her hand on the package did not stimulate the thought process for the procedure. Helping her by tearing off a piece (demonstrating the desired action) resulted in her being happy to see the package being opened but not the response even some children make when this demonstration is given of grabbing and tearing apart the package themselves.
Placing her hand in mine and helping her tear also didn't work. I finally gently took her hand in mind, we grabbed a small area and tore a long piece and repeated this procedure two or three times. Then I replaced her hand on the package and she felt for a piece and slowly peeled it away.
Interesting. A birthday package. Usually a delight in finding out what's inside and can't wait to open it now becomes a visual and physical challenge; something unfamiliar as a daily routine but something known to have been done before but that putting the information together and accessing the correct action/response is now becoming more challenging.
VISUAL STIMULATION. We chose a restaurant that wasn't too dark or too bright and where we knew the background music and level of "patronage" noise would not be high. We avoided choosing a restaurant with a bar directly within the restaurant area. We went early; Mom's used to eating around 5 PM and we felt arriving close to 4:30 would allow us some time to get settled, make choices and be almost finished before more guests arrived. Thankfully, her actual birthday wasn't on a weekend this year so that also helped.
CHOICES: We've found using two choices at most works best with food and clothing. This time we decided to do a "family meal" which provided two entrees. We wanted Mom to be involved as much as possible so we asked her if she would like "A" entrée or "B" entrée -- when actually both would be provided. In this way, she had a choice and we had less challenges; we also were seeking to cut costs as this past almost three years since my husband's death and the almost total rupture and tearing apart of our lives financially (especially with the complications of Julia Hed......'s accusing me of financial and emotional abuse, tearing Mom from our home and causing my bank accounts to be closed; see writings on JH and Abused Family.
SELF FEEDING: Mom can still feed herself most of the time. She often reverts now to treating everything she eats as "finger food" but at least she's still capable of remembering this activity. This night, though, perhaps because she wasn't in the facility and her brain "recognized" being in a restaurant, I notice Mom is using her soup spoon to eat (we cut everything up and provide small portions on her plate so she can push it around with a piece of bread and into her spoon) and she's doing fairly well. Of course we've asked for another cloth napkin and put it on her front and one on her lap because with her shaking of her hand she uses to feed herself, food inevitably lands on her front or in her lap. I see my Mom somewhat as she used to be in social situations. She's not carrying on a conversation, her dining skills are greatly affected by her physical limitations BUT she's seeming to take in a little about her surroundings and even makes a comment about being glad to be back and how she's enjoyed dining there in the past.
RANGE OF MOTION. We work through the challenges of moving Mom from her wheelchair to the car and from the car to the wheelchair. For some reason, getting out is easier usually than getting in. Guess it's because she's coming forward into something she recognizes and is familiar with while getting into a car is a skill set she uses less frequently.
I discovered a way we can usually get her into the car and sometimes it even works when we or the facility has difficulty moving her from her wheelchair to the toilet or from her wheelchair to her lift chair. I can't remember how the idea came about but I asked Mom to put her one hand on my shoulder and the other around my waist and "DANCE" with me.
For Mom's generation and for many of us, dancing together as a couple is partly learned and partly instinctual. It's a learned skill involving various brain activity and apparently this functionality remains for Mom.
What's interesting is sometimes when her feet won't move (Mom says her shoes stick to the floor/ground but we know it's the brain/body message sending/receiving that's not functioning) using this directive of "Let's Dance, Mom" and putting her hand on my shoulder and the other around my waist keys her brain/body to move and allows us to position Mom so we can turn her body around and sit her down in the front seat of the car or on the toilet or in her lift chair.
LAUGHTER AND TEARS. During our visit Mom laughs a lot. Many times she's "grinning" but her eyes seem to be not exactly where we are; perhaps she's fantasizing about the moment in ways we cannot see through our eyes.
Her mind wanders so much; changes onto so many subjects; it's when she thinks of something sad or that concerns her we find she can begin to become emotional and sometimes the escalation is into sobs and lots of tears. But this can often end almost as abruptly as it begins. Again, it's like being with a small child. What we used to refer to as "tantrums" in children, "unreasonable actions" and more appear more frequently. Interesting how we look at these in children's behaviours as "choices" -- wonder if they really are????
Some of the tears are most probably because my son will be leaving and his visit is so short and they're, not of his choosing but because of the distance, so infrequent and she misses him. Mom lived with us all the years of all of our children's young lives and through their college years and beyond. She's been a close part of their lives for more than a third of her own life. Of course she's moved to cry when her mind thinks of his leaving. What's more difficult is that like a small child she can be somewhat inconsolable because she, too, doesn't have that concept of time -- there will be another time when the can be together, a time to talk on the phone, etc.
However, my son does not really understand Mom also realizes her "time" is becoming shorter and shorter and therefore her feelings of "losing him" and us is a valid feeling and one that is difficult to work through because she does not have the "Executive function" of her brain, she does not have the ability to reason on our level.
How much we can learn from Early Childhood research if we would just realize the similarities in working with children at various ages and stages and with the elderly as they move through the various phases of Dementia, Lewy Body and others.
CELEBRATE LIFE with the ones you love. Make Memories To Last A Lifetime.
Even when the one you love cannot retain the times spent together, the ways in which you provide and care about them; even when they tell you or others "no one cares about me", take strength in knowing you are providing Love, Care, Compassion, Concern and above all else, you are serving as their Advocate and ensuring their quality of life is far better than if you walked away, infrequently called, occasionally visited and simply "moved on" believing your loved one didn't even know you were there or because they told you to "go away" or "you're not my daughter/son/ etc".
I've been there. It's frequent territory with Mom's ever advancing Lewy Body Dementia. Many days are not easy. Some days seem impossible. I just have to keep telling myself those days pass as the others do and in the end I have all those days I've been able to share, time I've been able to spend with Mom and I will cope and survive and thrive.
I will share with others my journey and I will find a way to enable others who will walk this same road to understand LBD through this blog and other advocacy.