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.
Sunday, February 9, 2014
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.
Tuesday, July 30, 2013
Portrait: Part 3:Abused Family: JH Uses Tennis Strategy To Wreck Havoc
"I once was blind, but now I see", those wonderful words from the Christian Hymn, "Amazing Grace". The first few words so true of the many months from the time JH first entered our lives on a somewhat regular basis and the last four words developing insights slowly over time and evolving even today.
JH and I exchanged over three dozen emails from mid February 2010 until the fist part of June 2010. They're cordial, no questions about Mom's feeling "abused" or concerns about Mom's treatment.
Each time JH took Mom out for a couple of hours. There were frequent long times in between those "visits" and one time four or five weeks elapsed. JH never called, never mentioned she'd be "away" or unable to visit. She just simply didn't email, didn't call and seldom even mentioned she might be "out of touch" for a while.
So, the question remains: Exactly when, Julia Hed...did you believe Mom was being emotionally and financially abused by me? What was your first clue? What evidence did you have? What made you not even question a mid nineties woman's concerns after living almost forty years with her daughter and her family's sudden "abuse".
The Most Important Questions: How could you return an elderly person to what you saw as so abusive a situation you had to call the Elder Abuse Hotline?
Why didn't the State of Missouri act immediately and remove her from the home?
Why didn't someone immediately come to visit the home?
Why didn't the authorities contact a Judge and get a Court Order to protect Mom?
How did you convince the DHSS of the State of Missouri to work with you?
It was most important you keep a low profile. You practice that daily with your nondescript appearance you blend in to most surroundings.
What, I wonder, did you tell the authorities to convince them Mom would be OK if she could just be placed permanently into a Long Term Care Facility -- where, of course, you'd have access to her when you wanted, for how long you wanted, to try to see if you could find additional money or other valuables.
There's also your Mission to convert Mom .... before it's too late.
You're driven by the need to convert Mom to the Catholic Faith. That's never been Mom's choice; we honored her choices, her wishes and never took advantage of her as you have done.
You tried posting a picture of The Divine Mercy in her room when she first went into an SNC. You left a "religious ring" in her drawer. You left other little articles of "the faith" hoping these "symbols" would work a "miracle" and bring yet another "lost soul" into what you believe is the One, the Only, the True Faith.
Mom has a right to believe as she has always wanted; shame on you for preying upon the elderly in their last years of life for your own personal wants and needs. Mom has her religion; a faith she's had since she was a child; the faith of her family, of her choice. She does not have to be a Catholic to be "saved".
You're good at what you do, Julia Hed....but not good enough.Your weakness remains you serve yourself instead of whom you claim to serve and in that way, you will always lose the final point in this game you play with the lives of people.
My emails reached out for support during the time my husband was critically and chronically ill as he was making his final journey with us succumbing and leaving us in January 2011.
My emails shared information and so did my conversations with Julia Hed... when she'd come by our home and when she'd take Mom out for a couple of hours; a "gift" of time I thought Julia Hed.... was giving our family as we struggled to work 24/7 caring for both my husband and Mom.
JH seemed so helpful; I called her our "guardian angel". She volunteered to lead the group and make all the arrangements for delivery of meals from the SVDP (St Vincent de Paul Society) from our Church when my husband returned home from over 100 straight days in the hospital and a month in Rehab with many ongoing medical conditions.
Now I See: volunteering to manage the delivery of meals put her in close and consistent contact with our family and guaranteed she'd eventually gain access to my Mom; access she'd tried to gain before but was denied.
Julia Hed.... is a strategist in life as she most probably is on the tennis court; her continuity at an advancing age, her early achievements and induction as the first woman into her University's Tennis Hall of Fame are indicators of Julia Hed....'s ability to outmaneuver opponents. She caught us off guard, she saw our weaknesses and vulnerabilities caring for my husband in his last months on this earth and for my mother who was progressing in her journey with Dementia, unrealized and undiagnosed as the challenging Lewy Body Dementia we've finally come to know and understand.
Tennis is a game of strategy; knowing your opponent's strengths and taking advantage of their weaknesses. Watching, waiting for the opportunity and striking when it's most advantageous. JH, in our opinion, applied and applies these same tactics to using undue influence to gain the trust and confidence of Mom while surprising us through her hard striking and unexpected actions.
When she changed to phone calls, from June 2010 to late October 2010, I followed her lead; I didn't realize she was moving into another phase of Elder Abuse of my Mom and I was being set up for the "winning point" -- taking Mom to our bank and removing my Power of Attorney while also opening a safety deposit box in her name and Mom's with JH keeping both keys.
Julia Hed....is a Registered Nurse with a degree from a prestigious University with a Nursing Department. Julia Hed..., by her own admission, has worked in positions of "authority" in a large East Coast hospital; more than just an RN, perhaps a Nurse Manager or another position overseeing other Nurses.... Julia Hed... never shared complete information about herself. She was and is a Eucharistic Minister and a Lector; two highly respected positions. Our Church, as has been the case during other violations of individuals through abuse, turns its back and refuses to protect yet another vulnerable portion of society, our elderly.
Julia Hed...... has worked for years with men and women with varying stages of Dementia and Alzheimer's, by her own admission. She works/worked for families who live/lived too far away to provide "in home" services as Julia did.
I discovered Julia's License to practice as a Registered Nurse had expired in 2009 and not been renewed until mid 2011 -- right about the time she started really becoming involved with our family. Wonder if the State and the families she served during that time were/are aware of that expiration; Julia told me she was working with men and women, giving meds and doing other "nursing" duties. She offered to do them for us but we didn't need that help -- this was months before she entered our life with the SVDP delivery of meals.
Julie Hed..... studied psychology as part of her Nursing curriculum and learned how to gain patients trust and to do what was needed. Julie learned how to talk with the elderly, how to gain their trust. Julie honed her skills developing trust in relationships with relatives of those she worked with. They trusted her with varying levels of decision making and providing her "advice" including when she thought it would be best to move into a Nursing Facility (according to what she'd shared with me) and even with assisting in the sale of articles and even at least once with the sale of a home.
Take a very elderly woman who was used to being the "center of attention" with illnesses and medical conditions; whose family constantly tried to provide everything she needed or wanted and who was now called to divide their time and attention for another family member. The Perfect Storm. The Perfect "Mark".
In Part 4 I'll write about how Julia Hed..... was so good at what she does she convinced the Missouri Department of Health and Senior Services to work with her and to participate in the abusive actions then and is using the DHSS Rules and Regulations for Residents of Long Term Care Facilities to continue to emotionally abuse my Mom and our family.
JH and I exchanged over three dozen emails from mid February 2010 until the fist part of June 2010. They're cordial, no questions about Mom's feeling "abused" or concerns about Mom's treatment.
Each time JH took Mom out for a couple of hours. There were frequent long times in between those "visits" and one time four or five weeks elapsed. JH never called, never mentioned she'd be "away" or unable to visit. She just simply didn't email, didn't call and seldom even mentioned she might be "out of touch" for a while.
So, the question remains: Exactly when, Julia Hed...did you believe Mom was being emotionally and financially abused by me? What was your first clue? What evidence did you have? What made you not even question a mid nineties woman's concerns after living almost forty years with her daughter and her family's sudden "abuse".
The Most Important Questions: How could you return an elderly person to what you saw as so abusive a situation you had to call the Elder Abuse Hotline?
Why didn't the State of Missouri act immediately and remove her from the home?
Why didn't someone immediately come to visit the home?
Why didn't the authorities contact a Judge and get a Court Order to protect Mom?
How did you convince the DHSS of the State of Missouri to work with you?
It was most important you keep a low profile. You practice that daily with your nondescript appearance you blend in to most surroundings.
What, I wonder, did you tell the authorities to convince them Mom would be OK if she could just be placed permanently into a Long Term Care Facility -- where, of course, you'd have access to her when you wanted, for how long you wanted, to try to see if you could find additional money or other valuables.
There's also your Mission to convert Mom .... before it's too late.
You're driven by the need to convert Mom to the Catholic Faith. That's never been Mom's choice; we honored her choices, her wishes and never took advantage of her as you have done.
You tried posting a picture of The Divine Mercy in her room when she first went into an SNC. You left a "religious ring" in her drawer. You left other little articles of "the faith" hoping these "symbols" would work a "miracle" and bring yet another "lost soul" into what you believe is the One, the Only, the True Faith.
Mom has a right to believe as she has always wanted; shame on you for preying upon the elderly in their last years of life for your own personal wants and needs. Mom has her religion; a faith she's had since she was a child; the faith of her family, of her choice. She does not have to be a Catholic to be "saved".
You're good at what you do, Julia Hed....but not good enough.Your weakness remains you serve yourself instead of whom you claim to serve and in that way, you will always lose the final point in this game you play with the lives of people.
My emails reached out for support during the time my husband was critically and chronically ill as he was making his final journey with us succumbing and leaving us in January 2011.
My emails shared information and so did my conversations with Julia Hed... when she'd come by our home and when she'd take Mom out for a couple of hours; a "gift" of time I thought Julia Hed.... was giving our family as we struggled to work 24/7 caring for both my husband and Mom.
JH seemed so helpful; I called her our "guardian angel". She volunteered to lead the group and make all the arrangements for delivery of meals from the SVDP (St Vincent de Paul Society) from our Church when my husband returned home from over 100 straight days in the hospital and a month in Rehab with many ongoing medical conditions.
Now I See: volunteering to manage the delivery of meals put her in close and consistent contact with our family and guaranteed she'd eventually gain access to my Mom; access she'd tried to gain before but was denied.
Julia Hed.... is a strategist in life as she most probably is on the tennis court; her continuity at an advancing age, her early achievements and induction as the first woman into her University's Tennis Hall of Fame are indicators of Julia Hed....'s ability to outmaneuver opponents. She caught us off guard, she saw our weaknesses and vulnerabilities caring for my husband in his last months on this earth and for my mother who was progressing in her journey with Dementia, unrealized and undiagnosed as the challenging Lewy Body Dementia we've finally come to know and understand.
Tennis is a game of strategy; knowing your opponent's strengths and taking advantage of their weaknesses. Watching, waiting for the opportunity and striking when it's most advantageous. JH, in our opinion, applied and applies these same tactics to using undue influence to gain the trust and confidence of Mom while surprising us through her hard striking and unexpected actions.
When she changed to phone calls, from June 2010 to late October 2010, I followed her lead; I didn't realize she was moving into another phase of Elder Abuse of my Mom and I was being set up for the "winning point" -- taking Mom to our bank and removing my Power of Attorney while also opening a safety deposit box in her name and Mom's with JH keeping both keys.
Julia Hed....is a Registered Nurse with a degree from a prestigious University with a Nursing Department. Julia Hed..., by her own admission, has worked in positions of "authority" in a large East Coast hospital; more than just an RN, perhaps a Nurse Manager or another position overseeing other Nurses.... Julia Hed... never shared complete information about herself. She was and is a Eucharistic Minister and a Lector; two highly respected positions. Our Church, as has been the case during other violations of individuals through abuse, turns its back and refuses to protect yet another vulnerable portion of society, our elderly.
Julia Hed...... has worked for years with men and women with varying stages of Dementia and Alzheimer's, by her own admission. She works/worked for families who live/lived too far away to provide "in home" services as Julia did.
I discovered Julia's License to practice as a Registered Nurse had expired in 2009 and not been renewed until mid 2011 -- right about the time she started really becoming involved with our family. Wonder if the State and the families she served during that time were/are aware of that expiration; Julia told me she was working with men and women, giving meds and doing other "nursing" duties. She offered to do them for us but we didn't need that help -- this was months before she entered our life with the SVDP delivery of meals.
Julie Hed..... studied psychology as part of her Nursing curriculum and learned how to gain patients trust and to do what was needed. Julie learned how to talk with the elderly, how to gain their trust. Julie honed her skills developing trust in relationships with relatives of those she worked with. They trusted her with varying levels of decision making and providing her "advice" including when she thought it would be best to move into a Nursing Facility (according to what she'd shared with me) and even with assisting in the sale of articles and even at least once with the sale of a home.
Take a very elderly woman who was used to being the "center of attention" with illnesses and medical conditions; whose family constantly tried to provide everything she needed or wanted and who was now called to divide their time and attention for another family member. The Perfect Storm. The Perfect "Mark".
In Part 4 I'll write about how Julia Hed..... was so good at what she does she convinced the Missouri Department of Health and Senior Services to work with her and to participate in the abusive actions then and is using the DHSS Rules and Regulations for Residents of Long Term Care Facilities to continue to emotionally abuse my Mom and our family.
Tuesday, July 2, 2013
Time Travel: Memory Travel: We Want Your Comments
Time Travel. Memory travel.
So different from all the amazing places in this wonderful world Mom and I saw both together and separately when we lived in a different time and she lived in a different place.
Just reread my first blog post. April 9, 2013. Not even three months ago.
I've written volumes about what's happened as it happened but never put it "out there" for everyone to see before starting this blog.
It was my way of trying to put the pieces of the puzzle together along with researching and trying to find someone, anyone, some organization, any organization, who could give me direction, guidance and above all, hope.
Before the blog I was still floundering in the remnants of the Tsunami Julia H. created in our family's life. A violent, destructive force of action moving everything in its path to another location; there is no control, you ride it out or you perish within its force. Then, comes the end that's the beginning of picking up the pieces of your life as you try to survive, one day at a time.
Only with Julia H., it wasn't just one Tsunami, Julia's kept creating more storms and more upheaval along the way. She's still trying.
Today, we see beyond what Julia does; we have more ways to ride out her storms and we continue to search for ways to put an end to her wrecking havoc on our lives. We work each day to stop her from finding other targets or marks for what we believe are financial and emotional abuse of the elderly.
A word to those of you who may be enduring similar challenges: take each day as it comes, the good and the bad, believe there is an end and you are reaching out for it by seeking truth and bringing it into the light.
So much seems to have changed and yet so much is the same. With Mom's physical and mental abilities. LBD is a constant roller coaster so it's really hard to predict or even observe if a specific "change" is permanent or temporary.
Perhaps I should be grateful for the latter. I've read about the projected road ahead. I've travelled that most difficult part of that road, end of life, already, with someone I love.
It's not a journey of choice; it's a journey of life.
What I'm trying to discover now, on this part of our "trek", concerns the hallucinations and delusions of Lewy Body Dementia. So much that's written is general in nature and what I'm looking for are commentaries from caregivers as the experiences are happening.
Relating that LBD patients often see distortions of facial features or other physical features and attributing that to possible vision challenges and the brain's creating the "illusion" is not as helpful as having people who've experienced these hallucinations and delusions specifically detailing what they are, when they occur and the physical and mental abilities or losses also observed.
I'll detail Mom's vivid hallucinations and delusions in an additional entry.
AN INVITATION: If you or anyone you know has or care gives for someone with LBD, please leave a message and detail your experiences.
Sharing our living with LBD serves as the best guide for all of us and will hopefully encourage the medical profession to examine more closely the mental and physical challenges of Lewy Body Dementia.
So different from all the amazing places in this wonderful world Mom and I saw both together and separately when we lived in a different time and she lived in a different place.
Just reread my first blog post. April 9, 2013. Not even three months ago.
I've written volumes about what's happened as it happened but never put it "out there" for everyone to see before starting this blog.
It was my way of trying to put the pieces of the puzzle together along with researching and trying to find someone, anyone, some organization, any organization, who could give me direction, guidance and above all, hope.
Before the blog I was still floundering in the remnants of the Tsunami Julia H. created in our family's life. A violent, destructive force of action moving everything in its path to another location; there is no control, you ride it out or you perish within its force. Then, comes the end that's the beginning of picking up the pieces of your life as you try to survive, one day at a time.
Only with Julia H., it wasn't just one Tsunami, Julia's kept creating more storms and more upheaval along the way. She's still trying.
Today, we see beyond what Julia does; we have more ways to ride out her storms and we continue to search for ways to put an end to her wrecking havoc on our lives. We work each day to stop her from finding other targets or marks for what we believe are financial and emotional abuse of the elderly.
A word to those of you who may be enduring similar challenges: take each day as it comes, the good and the bad, believe there is an end and you are reaching out for it by seeking truth and bringing it into the light.
So much seems to have changed and yet so much is the same. With Mom's physical and mental abilities. LBD is a constant roller coaster so it's really hard to predict or even observe if a specific "change" is permanent or temporary.
Perhaps I should be grateful for the latter. I've read about the projected road ahead. I've travelled that most difficult part of that road, end of life, already, with someone I love.
It's not a journey of choice; it's a journey of life.
What I'm trying to discover now, on this part of our "trek", concerns the hallucinations and delusions of Lewy Body Dementia. So much that's written is general in nature and what I'm looking for are commentaries from caregivers as the experiences are happening.
Relating that LBD patients often see distortions of facial features or other physical features and attributing that to possible vision challenges and the brain's creating the "illusion" is not as helpful as having people who've experienced these hallucinations and delusions specifically detailing what they are, when they occur and the physical and mental abilities or losses also observed.
I'll detail Mom's vivid hallucinations and delusions in an additional entry.
AN INVITATION: If you or anyone you know has or care gives for someone with LBD, please leave a message and detail your experiences.
Sharing our living with LBD serves as the best guide for all of us and will hopefully encourage the medical profession to examine more closely the mental and physical challenges of Lewy Body Dementia.
Monday, July 1, 2013
Julia: Part II: Cease and Desist: Missouri Law As JH's Enabler
Being accused of Elder Abuse is a serious accusation. Missouri Statues, of which there are three on Elder Abuse, provide significant levels of punitive action including imprisonment.
Anyone can report; certain professions directly involved in providing services are mandated reporters.The General Public is told it's perfectly all right to call the Elder Abuse Hot line if they even "think" there might be elder abuse.
Unfortunately, at least in the State of Missouri, the people responsible for investigating these reports have been and continue to be inadequately selected for their positions of responsibility determining changes in human lives and inadequately trained in Geriatrics including Dementia in all its forms.
Seniors need protection. Elder Abuse Laws are an important means of protection. Systems and Procedures leading to disruption of life of individuals and families due to intended or unintended negligence in due diligence regarding Elder Abuse Hot line Reports must be recognized and Statues must be drawn to protect the innocent as well as punish the guilty.
Abuse is defined by the State of Missouri on this page. It specifically states Abuse is "injury or harm". The online dictionary defines "injury" and "harm" as significant actions on the part of someone against another which inflicts damages. Missouri Law is written to attempt to protect Seniors but it also protects predators using Undue Influence and provides a means through which they can use the Law to their advantage.
JULIA, WHAT ABOUT MY DAUGHTER AND MY HUSBAND? My daughter dropped out of college to help with the 24/7 care of her Grandmother and her father. Why didn't you cite her as an abuser or at least an enabler?
As my daughter says, she was in her twenties and should have been considered someone who contributed to the abuse, allowing it to happen, an enabler, or possibly a participator.
What did you say that excluded either of them from your allegations?
Why didn't the DHSS even question my daughter about possible abuse of my Mom by me?
My husband had contact with many people including friends, relatives, members of our Church and others. Why wouldn't he ask one of them to report Elder Abuse of my Mom as he would have witnessed it.
He had a cell phone; I wasn't always with him; why didn't he call the Elder Abuse Hotline?
My daughter was constantly in and out of our home and had her own cell phone as well. If there was abuse as you claim, why didn't she file an Elder Abuse Hotline report or contact someone from the DHSS? She'd met with them when they visited our home at my request to seek further care and socialization for Mom.
As an adult, why would she allow her grandmother to be abused in a home where she lived for so many years?
WHY, JULIA? Why did you continue to return a very elderly woman to a home where you believe she was financially and emotionally abused?
How long was it from the date you made the report until you took her to open a joint safety deposit box and remove my POA?
Why did you walk away each time and if you believed what you said, "endanger" Mom? How could you if you believed what you reported?
Why didn't you contact a charity you supported, ALIVE, or Catholic Charities with whom you're very familiar?
Anyone can report; certain professions directly involved in providing services are mandated reporters.The General Public is told it's perfectly all right to call the Elder Abuse Hot line if they even "think" there might be elder abuse.
Unfortunately, at least in the State of Missouri, the people responsible for investigating these reports have been and continue to be inadequately selected for their positions of responsibility determining changes in human lives and inadequately trained in Geriatrics including Dementia in all its forms.
Seniors need protection. Elder Abuse Laws are an important means of protection. Systems and Procedures leading to disruption of life of individuals and families due to intended or unintended negligence in due diligence regarding Elder Abuse Hot line Reports must be recognized and Statues must be drawn to protect the innocent as well as punish the guilty.
Abuse is defined by the State of Missouri on this page. It specifically states Abuse is "injury or harm". The online dictionary defines "injury" and "harm" as significant actions on the part of someone against another which inflicts damages. Missouri Law is written to attempt to protect Seniors but it also protects predators using Undue Influence and provides a means through which they can use the Law to their advantage.
JULIA, WHAT ABOUT MY DAUGHTER AND MY HUSBAND? My daughter dropped out of college to help with the 24/7 care of her Grandmother and her father. Why didn't you cite her as an abuser or at least an enabler?
As my daughter says, she was in her twenties and should have been considered someone who contributed to the abuse, allowing it to happen, an enabler, or possibly a participator.
What did you say that excluded either of them from your allegations?
Why didn't the DHSS even question my daughter about possible abuse of my Mom by me?
My husband had contact with many people including friends, relatives, members of our Church and others. Why wouldn't he ask one of them to report Elder Abuse of my Mom as he would have witnessed it.
He had a cell phone; I wasn't always with him; why didn't he call the Elder Abuse Hotline?
My daughter was constantly in and out of our home and had her own cell phone as well. If there was abuse as you claim, why didn't she file an Elder Abuse Hotline report or contact someone from the DHSS? She'd met with them when they visited our home at my request to seek further care and socialization for Mom.
As an adult, why would she allow her grandmother to be abused in a home where she lived for so many years?
WHY, JULIA? Why did you continue to return a very elderly woman to a home where you believe she was financially and emotionally abused?
How long was it from the date you made the report until you took her to open a joint safety deposit box and remove my POA?
Why did you walk away each time and if you believed what you said, "endanger" Mom? How could you if you believed what you reported?
Why didn't you contact a charity you supported, ALIVE, or Catholic Charities with whom you're very familiar?
WHY, JULIA? Why didn’t you file a report on me alleging abuse of
my husband, too?
He was a Senior; he was incapable of protecting himself, he was also somewhat isolated in our home although attended by Home Health Care a couple of times a week and numerous returns for hospitalization.
He was a Senior; he was incapable of protecting himself, he was also somewhat isolated in our home although attended by Home Health Care a couple of times a week and numerous returns for hospitalization.
WHY, JULIA? Both
Mom and my husband had outside contact with medical professionals and hospital
stays of more than a day with various examinations and procedures and not one
of those professionals questioned their care in our home or my care giving as
you did.
WHY, JULIA? With so many other contacts and socializations with
medical and professional people focused on the elderly, why wasn't there anyone
else who had concerns about Mom or my husband’s physical or social welfare?
Mom went out to Adult Day
Care three times a week, Julia, starting in August, 2010, why didn’t they file
a report to the State of Missouri? They had a Nurse and Social Worker on
staff who often spoke with Mom and other attendees as required by State Law about where they lived and how they lived.
Mom visited several Doctors
and spent days in Hospitals and Rehab Centers from the time she entered
her Ninth Decade of life for medical challenges and some stays included surgeries.
Why was there never an Abuse report generated from these medical authorities if
it was indeed a part of our lives?
Mom spoke with many people without my being present and yet there was never a question to me, never a report to the DHSS about suspected "abuse" generating an investigation?
In fact, there was no contact from the DHSS that wasn't originated through my efforts to seek more medical or social services care for Mom before and during the time until we discovered your actions in late 2010.
Mom spoke with many people without my being present and yet there was never a question to me, never a report to the DHSS about suspected "abuse" generating an investigation?
In fact, there was no contact from the DHSS that wasn't originated through my efforts to seek more medical or social services care for Mom before and during the time until we discovered your actions in late 2010.
JULIA, Are you implying all the Doctors who examined Mom including Geriatricians did not see the emotional abuse you called the Hot line about? That visitors to our home over the years and especially during that 2010 time who spent time with Mom and in her room and talked with her could not see "financial abuse" that you saw?
What exactly were the specifics of the emotional and financial abuse, Julia?
Mom never paid one cent of her Social Security and she came into our home with no savings and no source of income from the age of 57 until 62. At age 63, Mom began travelling the world: her first trip was to Hawaii and the cost was more than her total yearly accumulated monthly checks for the preceeding year.
Each year after that until she was 87, Mom travelled and used all her SS money to travel the world. She's been several times to Europe (Western, Central and Eastern); Cruises in the Caribbean, Greek Isles, on European Rivers, on the Nile in Egypt, to Alaska and in China.
Mom had her own private room, double bed, dressing table with chair, nightstands and several lamps for reading and good lighting, carpeting throughout, a walk in closet, a double dresser, a TV and remote control, an automatic lift chair, a railing was installed to assist her lifting her body to a sitting position on the bed, guard rails on the tub, different types of shower chairs and frequent bathing, installed rails on toilets she used, safety rails installed, all area rugs removed, higher watt bulbs installed to ease sight. As she aged, steps were eliminated on the outside of the home and installation of a board walkway allowing easier departure and entry, carpeting was removed from steps leading from one level of the home to another, breakable items were put out of reach. This only begins a very long list of adjustments, additions, provisions and inclusions we made as Mom aged in our home, in the home she used to love to call "her home".
What exactly were the specifics of the emotional and financial abuse, Julia?
Mom never paid one cent of her Social Security and she came into our home with no savings and no source of income from the age of 57 until 62. At age 63, Mom began travelling the world: her first trip was to Hawaii and the cost was more than her total yearly accumulated monthly checks for the preceeding year.
Each year after that until she was 87, Mom travelled and used all her SS money to travel the world. She's been several times to Europe (Western, Central and Eastern); Cruises in the Caribbean, Greek Isles, on European Rivers, on the Nile in Egypt, to Alaska and in China.
Mom had her own private room, double bed, dressing table with chair, nightstands and several lamps for reading and good lighting, carpeting throughout, a walk in closet, a double dresser, a TV and remote control, an automatic lift chair, a railing was installed to assist her lifting her body to a sitting position on the bed, guard rails on the tub, different types of shower chairs and frequent bathing, installed rails on toilets she used, safety rails installed, all area rugs removed, higher watt bulbs installed to ease sight. As she aged, steps were eliminated on the outside of the home and installation of a board walkway allowing easier departure and entry, carpeting was removed from steps leading from one level of the home to another, breakable items were put out of reach. This only begins a very long list of adjustments, additions, provisions and inclusions we made as Mom aged in our home, in the home she used to love to call "her home".
WHY, JULIA? Did your professional credentials and your work experience cloud the DHSS's judgment?
Did you possibly misrepresent your credentials or work in some way to cause them to act so irresponsibly and unprofessionally?
Did you possibly misrepresent your credentials or work in some way to cause them to act so irresponsibly and unprofessionally?
Mom was visited on more than
one occasion in our home by the State of Missouri Department of Health and
even another Social Worker in the time period when you were taking Mom out on occasional excursions
but before you made the call to the Elder Abuse Hot line. Never was there a mention of any concerns or actions taken by the DHSS. No attempts to return and revisit our home. No questions from the DHSS representative who visited with Mom extensively including spending time with her in her room.
Mom was visited at her Day
Care by the DHSS as is their practice. No report generated.
No visits to our home based on “concerns” and no questions, no letters,
nothing.
WHY, JULIA? You spent approximately 38 - 40 hours total from the end
of January 2010 until October 26, 2010 with Mom; you spent an average total of
two hours each “visit” with her from the time you took her from our home to returning her to our home.
Transit to your preferred destination, a Steak N Shake or another close by location, would have been approximately 15 minutes each way; transferring Mom in and out of your car and into your destination and return to your car would have taken another 5 - 10 minutes each way.
Except the fateful day of October 26, 2010, (believe that's the date) when you called and asked to "keep her out a little longer as you were having such a good time". You picked her up about 1 PM (going from memory but do have record of time period) and instead of returning at 3 as was the original plan, you now wanted to bring her back "after 5". Since we had plans, it became a time adjustment to 5 PM.
WHY, JULIA? WHY DID YOU NEED FOUR HOURS? WHAT WERE YOUR PLANS? WHAT DID YOU WANT AND NEED TO DO? WHAT DID YOU ACTUALLY DO WITH MOM DURING THAT TIME? We know you took her to the bank where Mom had an account and opened a safety deposit box in your name and her name depositing a large sum of cash Mom had removed from our house and your keeping both keys not telling any family member. We know you arranged for Mom to remove my Power of Attorney; you'd found out about that months before when you asked if I had a Guardianship or POA. You were very good at getting information and giving little in return.
WHY, JULIA? You had to plan that day specifically. Mom had to have taken the money from our house before you left with her. It was a significant amount, a few thousand dollars we'd set aside for her burial. She also had Social Security money she didn't spend over all the months during my husband's severe medical challenges and our family's distress.
WHY THAT PARTICULAR DAY, JULIA? I can only wonder how you'd tested Mom during the time before that day to see how much she'd trust you and what she'd do with and for you; what did you do to build up her distrust of me?
Transferring trust to you from me had to include removal of basic needs and desires from Mom or seeming to do so. With your analytic and planning skills honed from years as a champion tennis player in college and your continued competitive participation in the sport today, you've applied your skills and knowledge where it can be financially beneficial, in my opinion, and harmful to our Senior population.
WHEN, JULIA, DID YOU FIRST SUSPECT ABUSE? JULIA, WHEN EXACTLY DID YOU BELIEVE THERE WAS EVIDENCE to substantiate a claim of Elder Abuse both financial and emotional of my Mom AND WHAT WAS THAT SPECIFIC EVIDENCE? These are just a few questions needing an answer to remove the smear you've worked so hard to affix to my character and integrity and I've spent almost three years in an effort to prove you are the actual abuser and my Mom wasn't your first and won't be your last "victim".