This entry began a few weeks after Mom's passing. We were yet to lose our beloved family pet, a cat we'd had since daughter was quite small. Mom and my husband and the cat. A family unit passing through the cycle of life, one after another, each going through an end to their lives and what we shared together.
We marvel at how time flies as we live in today and work towards tomorrow not realizing we're creating yesterday.
Daughter and I remain; half of a family that lived together from before her birth with Mom/Grandma --
A family unit of three generations living together and sharing a life and love.
Now I'm looking back, going into the closet, into drawers, places "belonging" to Mom.
Places I really didn't go and certainly not to remove anything, to give anything away -- without her asking, without her directive and without her knowing.
Respect for other people's privacy. I was raised with that concept. It's hard to break that habit, that life direction, even when the person's no longer with us.
Mama. Mom. So much a part of my life, of our family's life. You made me promise I'd never put you into a facility until you had no idea where you were. I kept that promise, Mama; at least I fought hard to try to keep it. I didn't break it, someone who didn't really care about you, about our "family" did.
Saying Goodbye each time we visited until the last goodbye before we returned to keep our vigil with you as you moved out of this life, away from us, ending a long and loving time of sharing and caring for one another.
I was grateful, so very grateful, you'd had a moment of "realization" one day not that long ago. . .
It was Summer, you'd had your 99th birthday, Mama. Your LBD was showing more signs of advancing; we saw it and we know Julia, who still came to visit, also saw the progression and your slipping into the final stage where you'd be leaving us.
More importantly to her, you would transition to where she could feel "safe" because you were the only person who could really reveal her dark side, the part behind her public persona of "helping the elderly" as one of abusing those for whom she claimed to give care by helping herself to what she could, when she could, while she could and then sitting back to ensure they didn't reveal her true character through continuing to exploit them through a "friendship" that was filled with deceit and deception.
I'd tried many times to talk with you about "the situation". Your Lewy Body Dementia was progressing. Memories, the good ones, the ones Julia couldn't distort, couldn't erase as hard as she tried; you had those. And they were what finally broke through Julia's manipulation and control.
LOVE CONQUERS ALL, JULIA.
I wonder if you still stand at the lectern in the Church we felt was our second home -- we had to leave, to get away from you, your presence and your immorality. Perhaps we'll return .. . someday. We care about those who truly serve, who truly believe and who truly are religious but their eyes must be opened, their eyes must see and their hearts must know and understand real truth as hard as it is to accept one of "their own" has violated and desecrated that sacred place.
We didn't want the LBD to progress; we didn't want you to get "sicker", Mama, but I am grateful for the change, the progression from staunchly supporting and upholding Julia as "someone who could never do that" -- turn you against your family and take money out of our home and out of your pocket -- to recognizing her as being what she was, a liar and a thief who came into our lives with only one intent, to take what she could get and use her trusted position as a Registered Nurse as we believe she's done before and continues to do, to gain personally from other people's tragedies.
You said it all, Mama, when you said "the lady who came to visit me did take my money, I know that now." My heart swelled while it broke apart because as much as I wanted to hear those words, I knew it may have been painful, although possibly not with your advanced LBD, to realize the harm that had been done to you and to your family, your home, your life.
How did you finally move to that place of realizing what she had done when you were progressing deeper into Lewy Body Dementia?
Perhaps a section of the cognitive area, that "Executive Reasoning" part, opened up for one last time.
My mother, my friend, my ever so special companion through so much of life's journey, had seen or been given the ability to see TRUTH.
Now, I begin that task of going through your clothing, your drawers -- your life.
Every day you'd lived with us, many decades of days we lived together as a multi generational family, you used this item, wore that piece of clothing. I finally got your things back from Julia, those we'd taken to you in your first "residence", your first Long Term Care Facility Julia convinced you was where you wanted to stay, where you wanted to live,would be where you were safe and could do what you wanted, when you wanted, how you wanted.
LIES. UNTRUTHS. DECEPTIONS. Easy to mislead someone with Dementia, especially Lewy Body Dementia.
But you knew that, Julia, you were a Registered Nurse, you "took care of elderly people with advanced Dementia" as you told us. You helped them move out of their homes, even helped one or more sell their homes. So helpful. Or was it so "help yourself" you were "full of"?
We knew what you were and who you were, Julia. Even our dealing with caregiving of my husband/daughter's father's severe medical problems and eventual death did not take away all our abilities. Either that or a higher power watched over us, which I feel is also the case, and led us in ways that later proved to be provident.
When we found out -- through a card received from the Postal Service for a Change of Address-- Mom was "moving out" PERMANENTLY, we went from disbelief to shock to anger.
We'd been "counseled" by the DHSS/Medicaid representative Mom should have "respite". Told it was for Mom's benefit. We had no idea you'd reported me to the Elder Abuse Hotline (falsely, but no one has ever been willing to admit they took action too quickly and didn't do due dilligence).
We'd asked for an extension of days for Mom to attend Adult Day Care; the "counselor" from the DHSS, we didn't know she was an Adult Protective Worker as well as a Medicaid worker and didn't know how Julia had been working to get Mom removed from her home/our home where she'd lived for almost four decades and we had created many great memories of a multigenerational family.
"Oh what a tangled web we weave when we practice to deceive". Julia, you are a master spinner of webs.
Upset but honoring her decision, we first delivered her clothes and belongings to the SNC. Boxes and boxes. This must have delighted Julia; she didn't have to rely on the key she'd convinced Mom to find and put in her purse to "come back and get her things after she left".
I took pictures of everything. I didn't trust Julia. She had torn us apart and succeeded in creating a huge abyss between Mom, my daughter and I.
Looking back I know the only way she did this was to prey upon my weakness, my natural instinct to care for and about my husband, my chronically and critically ill husband, and to not see her taking this opportunity of stress and uncertainty and twist it into an advantage she could use to turn Mom away from us, her family, and towards her, the predator.
I come across all the pictures of your travels from the time you were 62; you travelled the world and always more than once a year. We subsidized many trips; gave you the ability to travel more than once a year; provided a Single Supplement -- all because you didn't like or enjoy having someone else in the rooms or cabins when you travelled.
Why did you cut cards into pieces? Why did you decide to throw away so many memories? We salvaged them but were so confused by how you started destroying the memories that meant so much to you. Was this the effect Julia had on you even then? To get you to "do away with" anything reminding you of your "past" and your family?
She managed to get you to put away everything in your room -- to pack up, convincing you there was a man who had come to "take you away". A man you "remembered" from your youth but barely knew. A hope held out to leave a place you really didn't want to be.
No reminders. No connections. Advance the Lewy Body Dementia through removing anything that symbolized her past life, her family, her loves and what she held so dear.
Keep Mom believing in an impossible dream. She, was after all, "out of her mind", so what harm was there in "stringing her along" with this fantasy? It wasn't a typical Lewy Body Dementia hallucination or delusion -- it was undue influence and using the knowledge a Registered Nurse gets in psychology and working with the elderly with advanced cases of Dementia over the years that you used to make Mom's last days disruptive.
Were you trying to get the staff to order more "meds" for her, Julia? You had to know that might kill her -- LBD patients shouldn't have some of the meds for Dementia.
You came and went. You constantly "checked" on Mom watching her progress knowing the end would signal its presence because you'd seen it so many times before and taken advantage of so many, I truly believe, and still do, I also believe.
What "friend" of an elderly person purposely and intentionally tries to come between a family that's lived together in peace and harmony, in love and friendship, over almost four decades?
What "well meaning person" wants to see an elderly person "incarcerated" in a Long Term Care Facility when they had a home, a room of their own and so many amenities to move to sharing a smaller space, to having others tell you what to do, when and how. To go from a world of self determination to a world of dictation of movement and complete control of daily life.
I'm sorry, Mama, I wish you'd not had to have those experiences. We, your grand-daughter and I, did everything we could to ease the challenges, to make the path a little easier and to try, even against the odds of having people believe we were the abusers and not Julia, to give you, up to the moment of your passing, love, care, consideration and compassion.
I miss you Mama. I miss both you and my husband.
We go on. We know this is what we are meant to do. We will, both of us, continue to bring to light Undue Influence, Elder Abuse and manipulation and control along with how this can be accomplished in a system of laws, statues and regulations that do not fully protect and ensure the lives of seniors in Long Term Care.
We heard you, Mom, when you said those words. When you realized, if for only that short moment in time, the truth and the recognition of the real abuser in your life. Julia.
We live with a sense of peace knowing you shared this moment with us. We are grateful.
Wednesday, November 25, 2015
Wednesday, November 18, 2015
A Care Giver's Life Song
I wrote this entry several months ago. As with a few I'm starting to post, the reader should realize my journey through life was greatly affected by the daily pressures of coping with caregiving 24/7, watching lives slip away or being on the precipice of another critical medical event.
If my writing twists and turns, moves here and there, it wasn't my succumbing to mental decline but trying to adjust to an everyday life that was always on the brink of another challenge or even another disaster.
We focus too little on the care giver, the person or persons who use all their strengths and abilities focused on providing for someone outside of themselves.
They are the untrained, unpaid and often disrespected men and women who stand beside the young and the old.
Society claims there are places we can go, people we can talk with -- the truth is there's far more isolation and disassociation for those who are confined, those who must separate from the "normal" every day.
Services? Budgets overspent. Limited to bare minimum provisions with ongoing needs growing like a Tsunami.
How do you get there from here when all the time in your day is filled with ensuring the safety and well being of another?
Who contacts you? How do you find who to contact and what specifically you need, what you SHOULD ask for?
Those of us who are outside of this system, who are newly entered plunging head first and without any survival gear in place flounder not just with the adjustments to another person's needs but to how we begin the process and move from advancing point to point along the way.
If you're fortunate, just like we say "there's an AP for that", we can say about recognized and supported medical and life challenges "there's an Organization for that".
The challenge is finding the "right" one at the "right time" and one that still has the allocations, budget, funding and provides the services for which our loved one qualifies according to their specific guidelines and parameters.
As a caregiver wading through these systems, departments, associations, organizations is dependent on the individual with whom you make immediate contact and the questions you know to ask.
It also depends on their level of knowledge and your level of knowledge of the needs of your loved one.
That's why it's often important to enter into this "arena" with a Durable Power of Attorney for Health Care as many will not talk with anyone but the individual without this document.
When Mom and our family went through Lewy Body Dementia, unrecognized and unsupported, the LBD Association was in its infancy.
Today, they provide more online and other support. But they're not as local as others.Perhaps someday the Dementia organizations will collaborate more, will help one another through helping all who need Dementia assistance.
Hospitals release. That's it. Their work is done.
You're sent to a Dr or maybe to rehab.
Usually no one walks this path with you and barely gives you choices or possibilities -- just tells you "your loved one needs this" or "your loved one should have that" or "your loved one is no longer capable of staying alone and needs 24/7 caregiving".
They send you to a Dr. They're not knowledgeable about what you really need -- very few are. Many haven't had a course in Dementia in years but they "think" they know. You need a Neurologist but does your health care provide for that?
Sure, if you have the funds, you can get care.
What happens when the funds run out or they're not there?Trust me, you don't want to know -- but you need to know.
Listening to NPR some time ago, I heard a discussion about Glenn Campbell and his recent song released about his fighting Dementia. He's been diagnosed with Alzheimers. His wife is saying he's in Stage 6 -- losing most of his ability to communicate. He speaks small sentences but cannot understand what is said to him. Sad, but fascinating, these losses of mental processing.
From our own experience and observation, Lewy is a difficult life visitor to determine when it arrives.
On the outside, Mom appeared to be capable. She was using a cane to steady herself -- we didn't realize challenges with gait/walking and balance were a part of this disease process as we'd never heard of any Dementia except for Alzheimer's and this was not an AZ symptom. But isn't that just what "comes with age"? Especially very advanced age?
Don't you then just "naturally" transition to a walker and eventually to a wheelchair? Isn't that "normal".
IS IT? Why? What makes the legs move? Signals from the brain. What makes us capable of walking up and down stairs, in a straight line? Our brain.
As so many have done, we wrote off so much to "aging" and a belief any behaviours were "normal" when you get to "that age".
Today, I believe we weren't seeing the signs and the behaviours; but that was in a time when we'd never even heard of Lewy Body Dementia and when LBD, when it was written about, was believed to affect only less than 5% of the general population.
Just a couple of years ago we were told by a State of Missouri Adult Protective Worker, at the management level, with a Masters in Social Work:
"If your Mom doesn't have Alzheimer's, she doesn't have Dementia."
Hope whatever school he went to has revised their training program and the DHSS has opened their eyes, their ears and ensured their Adult Protective Workers and others have extensive training in Dementia and ALL ITS TYPES AND THEIR CHARACTERISTICS.
So many "slippages" we overlooked, minimized.
Mom covered up smiling, laughing, saying how silly her actions or words were.
After all, when someone "recognizes" they've made a mistake, isn't that good, cognitive thinking and analysis?
Apparently not or perhaps the disease had kept open this part of her cognitive reasoning ability while affecting others and as we saw in her advancing through LBD this "recognition" would become less.
Mom retained this "self recognition" almost to the end.
A part of her mind still tried to regain control at times and she'd laugh and say, "That was silly to say, wasn't it. I don't know what I was thinking."
And then a few minutes later, she'd slip into Aphasia with "WA WA WA" meaning something to her or "BA TA SA LA LA" meaning something else.
This "made up language" -- as we see it -- sometimes was retained and repeated and other times different sound combinations often strung together and still retaining a "sentence structure", if you will.
It was as is often mentioned by those who share information on Lewy Body Dementia on www.lbda.org a roller coaster ride for her and for us.
Can LBD be advanced through the world around us?
Can we lose more capabilities through isolation, lack of challenge and new opportunities?
Can we affect the ability of the mind through our surroundings?
For that perhaps we should talk about the children in foreign orphanages who are said to have difficulty adjusting to relating to caregivers due to lack of caregiving. Or, how about solitary confinement or war and imprisonment?
Is our brain as we age so very different from our brain as we develop during the years from birth into adulthood and beyond?
I often wonder if her brain incapacity development possibly escalated within the facility as she sat by herself, alone and without anyone to talk with but herself.
No radio. No TV. Mom didn't want one. For some time she'd had difficulty operating a remote but looking at some of them even today, they're becoming more and more complex rather than simplified.
But then, based on what we observed as her taking apart a lamp we had in her room, constantly unplugging her electric clock and turning it upside down or backwards on her bedside table, these typical items she was so familiar with for so long were sometimes now a source of possible challenge and even of injury and so we made the decision to remove and replace with ever simpler similar objects.
We had to remove a picture she was given from the grandchildren and great grandchildren -- a family composite of the three grandchildren and their spouses and the four grandchildren at the time. Mom would become upset because they would "talk" to her, they would move out of the picture and around the room. We often found the picture on a slant and sometimes even taken down.
Mom became obsessed with packing and unpacking; she wanted out of the facility, that was obvious. However, the outside influence of J. visiting and the "new stories" about a "male visitor" who was going to "take Mom away" and move her out of the facility (a story that ebbed and flowed with the visits of J and we saw as being influenced by and constructed by this Undue Influencer; the stories ceased when J was not visiting and reappeared after her visits).
Mom fell a lot. Balance and gait in Lewy Body Dementia are affected. The facility wouldn't acknowledge Mom's "outside of the Dr from the facility" diagnosis of LBD. They didn't provide the level of care she needed. Instead, they "allowed" her "individual rights" to say "NO" and asked her questions, like about participating in movement "exercises" instead of giving her personal time and working with her on movement.
Looking back is always clearer than looking forward when you're walking a path you've never taken and all around you is a vast wilderness with only an occasional reference point along the way.
Here's to the unsung heroes of society. Those who walk the paths of life alongside people of all ages and stages of life.
Their journey has a beginning and an end but it's always the way they choose to travel even in times where they appear to have no choice that shows us how honorable their life choice is to simply provide what's needed.
If my writing twists and turns, moves here and there, it wasn't my succumbing to mental decline but trying to adjust to an everyday life that was always on the brink of another challenge or even another disaster.
We focus too little on the care giver, the person or persons who use all their strengths and abilities focused on providing for someone outside of themselves.
They are the untrained, unpaid and often disrespected men and women who stand beside the young and the old.
Society claims there are places we can go, people we can talk with -- the truth is there's far more isolation and disassociation for those who are confined, those who must separate from the "normal" every day.
Services? Budgets overspent. Limited to bare minimum provisions with ongoing needs growing like a Tsunami.
How do you get there from here when all the time in your day is filled with ensuring the safety and well being of another?
Who contacts you? How do you find who to contact and what specifically you need, what you SHOULD ask for?
Those of us who are outside of this system, who are newly entered plunging head first and without any survival gear in place flounder not just with the adjustments to another person's needs but to how we begin the process and move from advancing point to point along the way.
If you're fortunate, just like we say "there's an AP for that", we can say about recognized and supported medical and life challenges "there's an Organization for that".
The challenge is finding the "right" one at the "right time" and one that still has the allocations, budget, funding and provides the services for which our loved one qualifies according to their specific guidelines and parameters.
As a caregiver wading through these systems, departments, associations, organizations is dependent on the individual with whom you make immediate contact and the questions you know to ask.
It also depends on their level of knowledge and your level of knowledge of the needs of your loved one.
That's why it's often important to enter into this "arena" with a Durable Power of Attorney for Health Care as many will not talk with anyone but the individual without this document.
When Mom and our family went through Lewy Body Dementia, unrecognized and unsupported, the LBD Association was in its infancy.
Today, they provide more online and other support. But they're not as local as others.Perhaps someday the Dementia organizations will collaborate more, will help one another through helping all who need Dementia assistance.
Hospitals release. That's it. Their work is done.
You're sent to a Dr or maybe to rehab.
Usually no one walks this path with you and barely gives you choices or possibilities -- just tells you "your loved one needs this" or "your loved one should have that" or "your loved one is no longer capable of staying alone and needs 24/7 caregiving".
They send you to a Dr. They're not knowledgeable about what you really need -- very few are. Many haven't had a course in Dementia in years but they "think" they know. You need a Neurologist but does your health care provide for that?
Sure, if you have the funds, you can get care.
What happens when the funds run out or they're not there?Trust me, you don't want to know -- but you need to know.
Listening to NPR some time ago, I heard a discussion about Glenn Campbell and his recent song released about his fighting Dementia. He's been diagnosed with Alzheimers. His wife is saying he's in Stage 6 -- losing most of his ability to communicate. He speaks small sentences but cannot understand what is said to him. Sad, but fascinating, these losses of mental processing.
From our own experience and observation, Lewy is a difficult life visitor to determine when it arrives.
On the outside, Mom appeared to be capable. She was using a cane to steady herself -- we didn't realize challenges with gait/walking and balance were a part of this disease process as we'd never heard of any Dementia except for Alzheimer's and this was not an AZ symptom. But isn't that just what "comes with age"? Especially very advanced age?
Don't you then just "naturally" transition to a walker and eventually to a wheelchair? Isn't that "normal".
IS IT? Why? What makes the legs move? Signals from the brain. What makes us capable of walking up and down stairs, in a straight line? Our brain.
As so many have done, we wrote off so much to "aging" and a belief any behaviours were "normal" when you get to "that age".
Today, I believe we weren't seeing the signs and the behaviours; but that was in a time when we'd never even heard of Lewy Body Dementia and when LBD, when it was written about, was believed to affect only less than 5% of the general population.
Just a couple of years ago we were told by a State of Missouri Adult Protective Worker, at the management level, with a Masters in Social Work:
"If your Mom doesn't have Alzheimer's, she doesn't have Dementia."
Hope whatever school he went to has revised their training program and the DHSS has opened their eyes, their ears and ensured their Adult Protective Workers and others have extensive training in Dementia and ALL ITS TYPES AND THEIR CHARACTERISTICS.
So many "slippages" we overlooked, minimized.
Mom covered up smiling, laughing, saying how silly her actions or words were.
After all, when someone "recognizes" they've made a mistake, isn't that good, cognitive thinking and analysis?
Apparently not or perhaps the disease had kept open this part of her cognitive reasoning ability while affecting others and as we saw in her advancing through LBD this "recognition" would become less.
Mom retained this "self recognition" almost to the end.
A part of her mind still tried to regain control at times and she'd laugh and say, "That was silly to say, wasn't it. I don't know what I was thinking."
And then a few minutes later, she'd slip into Aphasia with "WA WA WA" meaning something to her or "BA TA SA LA LA" meaning something else.
This "made up language" -- as we see it -- sometimes was retained and repeated and other times different sound combinations often strung together and still retaining a "sentence structure", if you will.
It was as is often mentioned by those who share information on Lewy Body Dementia on www.lbda.org a roller coaster ride for her and for us.
Can LBD be advanced through the world around us?
Can we lose more capabilities through isolation, lack of challenge and new opportunities?
Can we affect the ability of the mind through our surroundings?
For that perhaps we should talk about the children in foreign orphanages who are said to have difficulty adjusting to relating to caregivers due to lack of caregiving. Or, how about solitary confinement or war and imprisonment?
Is our brain as we age so very different from our brain as we develop during the years from birth into adulthood and beyond?
I often wonder if her brain incapacity development possibly escalated within the facility as she sat by herself, alone and without anyone to talk with but herself.
No radio. No TV. Mom didn't want one. For some time she'd had difficulty operating a remote but looking at some of them even today, they're becoming more and more complex rather than simplified.
But then, based on what we observed as her taking apart a lamp we had in her room, constantly unplugging her electric clock and turning it upside down or backwards on her bedside table, these typical items she was so familiar with for so long were sometimes now a source of possible challenge and even of injury and so we made the decision to remove and replace with ever simpler similar objects.
We had to remove a picture she was given from the grandchildren and great grandchildren -- a family composite of the three grandchildren and their spouses and the four grandchildren at the time. Mom would become upset because they would "talk" to her, they would move out of the picture and around the room. We often found the picture on a slant and sometimes even taken down.
Mom became obsessed with packing and unpacking; she wanted out of the facility, that was obvious. However, the outside influence of J. visiting and the "new stories" about a "male visitor" who was going to "take Mom away" and move her out of the facility (a story that ebbed and flowed with the visits of J and we saw as being influenced by and constructed by this Undue Influencer; the stories ceased when J was not visiting and reappeared after her visits).
Mom fell a lot. Balance and gait in Lewy Body Dementia are affected. The facility wouldn't acknowledge Mom's "outside of the Dr from the facility" diagnosis of LBD. They didn't provide the level of care she needed. Instead, they "allowed" her "individual rights" to say "NO" and asked her questions, like about participating in movement "exercises" instead of giving her personal time and working with her on movement.
Looking back is always clearer than looking forward when you're walking a path you've never taken and all around you is a vast wilderness with only an occasional reference point along the way.
Here's to the unsung heroes of society. Those who walk the paths of life alongside people of all ages and stages of life.
Their journey has a beginning and an end but it's always the way they choose to travel even in times where they appear to have no choice that shows us how honorable their life choice is to simply provide what's needed.
Tuesday, November 10, 2015
Who Cares?
Happy Days Are Here Again . . .
Technology will provide for all our wants and needs.....
Robots will do the work while we enjoy .....
Reruns of "advertorials" commonly shown in the form of classroom "science" movies (generally produced by large companies heavily invested in producing economic change and advancement) were shown starting in the mid to late fifties to showcase the homes, the cars, the highways and life as we would live it "before the turn of the next century" -- meaning, of course, into the year 2000.
Most of it didn't happen. Much of it we're still being told is "just around the corner" in a few more years, it will be here!
YouTube and other venues proclaim our "soon to come" lives of more ease and convenience
Self driving cars, robots that will clean our homes or run our businesses .... why we won't need to lift a finger and we surely won't need to worry about any medical challenges or physical infirmities because...
there's an AP for that ... an Assistance based Personal program or provision.
Science Fiction becoming daily life?
When did we step into the pages of those long ago Science Fiction Comics or novels?
What happened to "the fruits of our labor" concepts?
How about a "good days' work" and "contributing to the family or to society"?
What form of economic change will it take to open our eyes and allow us to see we've turned away, walked away and often closed our eyes to so many challenges "others" have.
Oh, we donate and we contribute but how many truly add the level of commitment of ongoing involvement?
Where have the voices raised by the children of the 60's gone? Are they growing older and less audible and are we focusing on the "capable" and "outstanding in their fields of endeavor" so as not to see what's really ahead?
Who will rise to speak again? The Millennials? Those held back and those who may be shackled by debt from education not resulting in employment and many of whom are still reaching up, reaching out and trying other ways to "have the American dream" realized by so many just a few years older than they are.
Two eras of births in our immediate family: Generation X and Millennial.
The older had their college dream realized; they found jobs; they started their climb into "arriving" at a place equal to their parents or beyond.
The younger has struggled with the challenges of caring for a father and grandmother. Challenges not shared equally by her siblings.
Was it because she was "the girl", "the daughter", "the grand-daughter"? Because the others "lived far away"?
Or were those the easy ways to explain their ability to move on, to get ahead and to grow farther and faster than she may be able?
She's not angry, resentful or in any way negative about the situation.
She's not alone.
Others in her generation are struggling for other reasons and together they're creating a "new generation".
Their generation is defined by "New Economics" and forces not seen since before the "Baby Boomers", their parents and grandparent's generations.
I see this group as just beginning to define itself and not be defined by those who do not know, who do not see and who only want to "categorize" them as they used to those in my generation -- as a group, as numbers, as statistics.
Now we replace our parents as they depart -- each generation in its own time.
Who's writing this his/her/story, anyway?
You and I or "they" and "them".
Take note, Gen X'ers and Millennials -- the only real difference is where we are in the great scheme of things that are and are to come.
There will be no difference unless YOU make the difference.
A tale as old as time . . .
Technology will provide for all our wants and needs.....
Robots will do the work while we enjoy .....
Reruns of "advertorials" commonly shown in the form of classroom "science" movies (generally produced by large companies heavily invested in producing economic change and advancement) were shown starting in the mid to late fifties to showcase the homes, the cars, the highways and life as we would live it "before the turn of the next century" -- meaning, of course, into the year 2000.
Most of it didn't happen. Much of it we're still being told is "just around the corner" in a few more years, it will be here!
YouTube and other venues proclaim our "soon to come" lives of more ease and convenience
Self driving cars, robots that will clean our homes or run our businesses .... why we won't need to lift a finger and we surely won't need to worry about any medical challenges or physical infirmities because...
there's an AP for that ... an Assistance based Personal program or provision.
Science Fiction becoming daily life?
When did we step into the pages of those long ago Science Fiction Comics or novels?
What happened to "the fruits of our labor" concepts?
How about a "good days' work" and "contributing to the family or to society"?
What form of economic change will it take to open our eyes and allow us to see we've turned away, walked away and often closed our eyes to so many challenges "others" have.
Oh, we donate and we contribute but how many truly add the level of commitment of ongoing involvement?
Where have the voices raised by the children of the 60's gone? Are they growing older and less audible and are we focusing on the "capable" and "outstanding in their fields of endeavor" so as not to see what's really ahead?
Who will rise to speak again? The Millennials? Those held back and those who may be shackled by debt from education not resulting in employment and many of whom are still reaching up, reaching out and trying other ways to "have the American dream" realized by so many just a few years older than they are.
Two eras of births in our immediate family: Generation X and Millennial.
The older had their college dream realized; they found jobs; they started their climb into "arriving" at a place equal to their parents or beyond.
The younger has struggled with the challenges of caring for a father and grandmother. Challenges not shared equally by her siblings.
Was it because she was "the girl", "the daughter", "the grand-daughter"? Because the others "lived far away"?
Or were those the easy ways to explain their ability to move on, to get ahead and to grow farther and faster than she may be able?
She's not angry, resentful or in any way negative about the situation.
She's not alone.
Others in her generation are struggling for other reasons and together they're creating a "new generation".
Their generation is defined by "New Economics" and forces not seen since before the "Baby Boomers", their parents and grandparent's generations.
I see this group as just beginning to define itself and not be defined by those who do not know, who do not see and who only want to "categorize" them as they used to those in my generation -- as a group, as numbers, as statistics.
Now we replace our parents as they depart -- each generation in its own time.
Who's writing this his/her/story, anyway?
You and I or "they" and "them".
Take note, Gen X'ers and Millennials -- the only real difference is where we are in the great scheme of things that are and are to come.
There will be no difference unless YOU make the difference.
A tale as old as time . . .
Friday, November 6, 2015
The Answer Is Blowing In The Wind on Lewy Body Dementia
Lewy Body Dementia, the dementia of many masks, is beginning to be recognized but not yet talked about as frequentlly as Alzheimers.
Could the answers to this formidable opponent, this destroyer of so many capable and gifted individuals like Robin Williams, Casey Kasen and others not recognized, be within reach -- through more investigation of causes of death and less acceptance of typical diagnosis of Alzheimers and other illnesses causing "brain damage"?
My personal belief is this form of Dementia, LBD, is far more prevelant and may hold the key to other Dementias as it appears to be slower moving or at least less effacing of complete skillsets and abilities.
It also appears the brain may try to "heal itself" by redirecting messages and "requests" for various actions and spoken words, for a longer period of time than Alzheimers.
My comments in this blog are from the extensive ability we had to live with Lewy Body Dementia as it was developing and to see the results of LBD unrecognized, undiagnosed and working through the challenges of medical professionals, Government appointed Adult Protective Workers, individuals with Masters in Social Work and others being closed minded and non proactive -- non focused on the individual, the situation, the family unit.
And, as life continues, faced with two immediate family deaths in a relatively short period of time, I post now to celebrate their lives, to celebrate our lives and to believe shedding light on the challenges of living with Lewy Body Dementia is a journey needing telling.
The celebrities had financial ability and families who could live with and try to manage the changes brought on by people who were truly fighting for their lives, for their "selves",for the people they believed they still were even while this "phantom" disease crept deeper and deeper into their very beings.
Yet, they too, did not see, did not realize, especially with Robin Williams, how devastating this disease is for people who functioned highly, were exceptionally capable and could not control, could not minimalize or change what was happening.
Out of control. That's how they felt. When they had the ability to realize something was happening. Some respond with anger, some respond with despondency and others respond as Robin Williams did, ending what was happening in his own time, his own way.
Lewy Body Dementia needs the type of promotion and recognition of Alzheimers. I've been saying this since discovering Mom had the disease and since early 2013 promoting this to all who read our story.
LBD debilitates and undermines relationships and individuals; it is a cancer in its own right -- eating away at the body and being of everyone it touches.
LBD goes unrecognized and it may have related diseases of the brain we are yet to discover, identify or reclassify.
Whoopie Goldberg has spoken out for LBD.
The families of Robin and Casey are speaking up.
WE NEED MORE. As a society, we need more.
Each day our population ages; the world population ages. But aging isn't the cause of LBD; it may allow the disease to progress more rapidly but it may be we all harbor this inevitable brain disease if given enough time.
Should we not want to add years to our lives in fear of this phantom, in fear of this unknown?
Or should we work to ensure we continue to spread the word about Lewy Body Dementia and eventually find funding for this and other lesser known diseases which may be related, may have similar causes and all negatively affect positive relationships and lives.
Collaboration and not segmentation is needed. Sharing of findings, information, concepts, capabilities within the educational and research community.
Aligning organizations in the fight against Dementia and related diseases working together, sharing and caring about each positive step, each finding that will reduce, control, adjust, or even eventually eradicate Dementia, in its full range, it's full effects, as has been started within the medical communities seeking treatments and cures for other diseases.
Please tell someone today to visit the website on Lewy Body Dementia. Here's the click thru.
Could the answers to this formidable opponent, this destroyer of so many capable and gifted individuals like Robin Williams, Casey Kasen and others not recognized, be within reach -- through more investigation of causes of death and less acceptance of typical diagnosis of Alzheimers and other illnesses causing "brain damage"?
My personal belief is this form of Dementia, LBD, is far more prevelant and may hold the key to other Dementias as it appears to be slower moving or at least less effacing of complete skillsets and abilities.
It also appears the brain may try to "heal itself" by redirecting messages and "requests" for various actions and spoken words, for a longer period of time than Alzheimers.
My comments in this blog are from the extensive ability we had to live with Lewy Body Dementia as it was developing and to see the results of LBD unrecognized, undiagnosed and working through the challenges of medical professionals, Government appointed Adult Protective Workers, individuals with Masters in Social Work and others being closed minded and non proactive -- non focused on the individual, the situation, the family unit.
And, as life continues, faced with two immediate family deaths in a relatively short period of time, I post now to celebrate their lives, to celebrate our lives and to believe shedding light on the challenges of living with Lewy Body Dementia is a journey needing telling.
The celebrities had financial ability and families who could live with and try to manage the changes brought on by people who were truly fighting for their lives, for their "selves",for the people they believed they still were even while this "phantom" disease crept deeper and deeper into their very beings.
Yet, they too, did not see, did not realize, especially with Robin Williams, how devastating this disease is for people who functioned highly, were exceptionally capable and could not control, could not minimalize or change what was happening.
Out of control. That's how they felt. When they had the ability to realize something was happening. Some respond with anger, some respond with despondency and others respond as Robin Williams did, ending what was happening in his own time, his own way.
Lewy Body Dementia needs the type of promotion and recognition of Alzheimers. I've been saying this since discovering Mom had the disease and since early 2013 promoting this to all who read our story.
LBD debilitates and undermines relationships and individuals; it is a cancer in its own right -- eating away at the body and being of everyone it touches.
LBD goes unrecognized and it may have related diseases of the brain we are yet to discover, identify or reclassify.
Whoopie Goldberg has spoken out for LBD.
The families of Robin and Casey are speaking up.
WE NEED MORE. As a society, we need more.
Each day our population ages; the world population ages. But aging isn't the cause of LBD; it may allow the disease to progress more rapidly but it may be we all harbor this inevitable brain disease if given enough time.
Should we not want to add years to our lives in fear of this phantom, in fear of this unknown?
Or should we work to ensure we continue to spread the word about Lewy Body Dementia and eventually find funding for this and other lesser known diseases which may be related, may have similar causes and all negatively affect positive relationships and lives.
Collaboration and not segmentation is needed. Sharing of findings, information, concepts, capabilities within the educational and research community.
Aligning organizations in the fight against Dementia and related diseases working together, sharing and caring about each positive step, each finding that will reduce, control, adjust, or even eventually eradicate Dementia, in its full range, it's full effects, as has been started within the medical communities seeking treatments and cures for other diseases.
Please tell someone today to visit the website on Lewy Body Dementia. Here's the click thru.
Tuesday, November 3, 2015
There Oughta Be A Law
QUIET. SO QUIET. It's all been
"swept under the rug". My husband’s dead, so is my mother and I
suppose when I pass, the only one left who really cares and remembers will be
my daughter.
That’s the way we function as a
society, isn’t it? Time passes and
injustice reappears because we take no real action to ensure the ongoing
protection of those who can be abused, mistreated and neglected?
Any person who purposely files a false report of elder abuse or neglect is guilty of a class A misdemeanor at this time and when I was accused of Elder Abuse.
WHAT ABOUT
UNDUE INFLUENCE? No changes there I’ve
found.
Here's a resource I found helpful. http://www.eldersandcourts.org/Aging/Key-Legal-Issues/Undue-Influence.aspx
Undue influence is tied to financial exploitation but this article and others do not take into account the ability to use current practices by the Department of Health and Human Services, Senior Services, through their lack of training personnel and creating specific systems and procedures protecting the rights of the accused to ensure another "Senior" isn't falsely accused and a family torn apart as ours was.
As our parents grow older, so do we. Aging into the 80's and beyond often means the "children" are now Seniors themselves. Their resources are being used to accomodate a lower income level (for many) and their abilities may be lessened physically.
Here's a resource I found helpful. http://www.eldersandcourts.org/Aging/Key-Legal-Issues/Undue-Influence.aspx
Undue influence is tied to financial exploitation but this article and others do not take into account the ability to use current practices by the Department of Health and Human Services, Senior Services, through their lack of training personnel and creating specific systems and procedures protecting the rights of the accused to ensure another "Senior" isn't falsely accused and a family torn apart as ours was.
As our parents grow older, so do we. Aging into the 80's and beyond often means the "children" are now Seniors themselves. Their resources are being used to accomodate a lower income level (for many) and their abilities may be lessened physically.
Yet it was
the Undue Influence which caused our problems and set into motion the loss of
hundreds of thousand of dollars of taxpayer money and the tearing apart of a family
that for years had been self sustaining and contributing to these funds now
being abused and misapplied.
Thankfully,
there are changes coming in 2017 although why it takes years to increase
penalties and correct gross errors in State Regulations and Laws after they've
been passed, I do not understand.
Financial
abuse will still need to be proven and with cash, that’s still going to be
difficult if not impossible.
WHAT WILL YOU DO TODAY OR TOMORROW TO PROTECT THE ELDERS IN OUR SOCIETY?
Will you read but turn away or will you choose to look deeper into the problem and read for yourself your State's laws regarding Undue Influence of the Senior Population?
Will you carry into your personal life questions about how groups and organizations are run to ensure Seniors are protected through systems that do not take for granted someone's "accreditation" or "registration" as a professional?
Will you advocate beside me and others for higher levels of professional capabilities for those entrusted with the social responsibility of "protecting" Seniors?
Will you advocate beside me and others for higher levels of professional capabilities for those entrusted with the social responsibility of "protecting" Seniors?
Thursday, October 29, 2015
Cultural Differences or Economic Necessity?
Driving home today I heard a comment on NPR from a listener about care giving for older generations as a "part of their culture" and how they would never "institutionalize" a family member.
I followed that practice. It was never my intent to "institutionalize" my Mom. And she'd told me from a very early age how she didn't want to be put into a "home" until she didn't know anything or anyone around her.
Sadly, she and we didn't understand the "faces" of Lewy Body Dementia and how the executive skill sets -- the ability to reason and rationalize -- can be manipulated and controlled by someone aware of the vulnerabilities of men and women with this disease using Undue Influence.
We're living in a time when aging is becoming the norm. Many diseases have been eradicated or controlled and the most challenging are somewhat manageable -- cancer, heart problems, MS.
There remain a few diseases in our privileged society that remain severe challenges for those who suffer and those who walk along side them daily -- ALS, for one. However, as advances in genetics and research conquer new frontiers, we become a nation of more possibilities for greater health and greater longevity.
However, we continue to change. Lifestyles become far different from previous generations. Active lifestyles need to be created, no longer mandated by working.
Individuals and families in today's USA do not generally live a sustainable lifestyle where the "sweat of their brow" doing daily work produces food for the table or clothing as bare minimums.
Governments and idealistic practices aside, take a look at emerging countries and islands set in a time when cars needed to be shifted to change gears and people repaired rather than replaced.
However, today, for most, daily living is a high cost and work means going outside the home often at minimal wage and long hours, often at the mercy of the employer who practices "part time" assignments with full time workloads.
Work is physically and emotionally taxing and trying for many and even those who've "made it" are torn by the stresses of coping with an ever lengthening and expanding work versus "play" or "leisure" time.
I've walked that path and continue seeing a long stretch of it in front of me as I try, just as I did so many years ago, to move ahead, gain a little more, provide and produce.
Our lives, daughter's and mine, are a little better. We went through times when every penny, every item we needed, not wanted, was a major decision as to how long we could "do without" and "make do".
We still struggle but have a little time and a little money we can call "extra" to buy a few things -- not like we see advertised everywhere but at least we can replace some necessary clothing items and do a few repairs we've had to set aside for so long.
Mom taught me to make do; she taught me to remake and reuse. These skillsets were a necessity as we made our way through caregiving for her and my husband.
I see friends and relatives who have had challenges but they've also had health insurance that totally or mostly covered their major events. But then, none of them endured quite the long term stay we did -- 100 days -- when you max out all the resources and the bills keep piling up because "health" has not returned, does not return and more problems occur.
We rarely see behind the curtain of extensive health care problems.
When we're given a glimpse through fund raisers or through TV commercials asking for support, we're shown the positives, the possibilities, and never behind the doors of the families and what they struggle with to make it through every day.
There was a day when Americans married very young 15 - 18. There are still societies where this is a practice and we "more enlightened" societies work to "protect" young women from this life of hardship. It wasn't considered to be that by our society; it was simply a norm; a practice; the way life happened.
My mother didn't marry until she was past 30 -- she was a "spinster", in the language of the day. Most friend and family members had several children by the time she had her first; most of my cousins were either quite a bit younger than I was or quite a bit older.
Those were the days when family almost always took care of their own. Children, of whom there were often more than a half dozen, took in their aging parents.
Then came the days of the "single family household" when a family was considered to be the father, mother and child/children and anyone else was looked at as a "freeloader" or someone who "couldn't make it on their own".
Sadly, she and we didn't understand the "faces" of Lewy Body Dementia and how the executive skill sets -- the ability to reason and rationalize -- can be manipulated and controlled by someone aware of the vulnerabilities of men and women with this disease using Undue Influence.
We're living in a time when aging is becoming the norm. Many diseases have been eradicated or controlled and the most challenging are somewhat manageable -- cancer, heart problems, MS.
There remain a few diseases in our privileged society that remain severe challenges for those who suffer and those who walk along side them daily -- ALS, for one. However, as advances in genetics and research conquer new frontiers, we become a nation of more possibilities for greater health and greater longevity.
However, we continue to change. Lifestyles become far different from previous generations. Active lifestyles need to be created, no longer mandated by working.
Individuals and families in today's USA do not generally live a sustainable lifestyle where the "sweat of their brow" doing daily work produces food for the table or clothing as bare minimums.
Governments and idealistic practices aside, take a look at emerging countries and islands set in a time when cars needed to be shifted to change gears and people repaired rather than replaced.
However, today, for most, daily living is a high cost and work means going outside the home often at minimal wage and long hours, often at the mercy of the employer who practices "part time" assignments with full time workloads.
Work is physically and emotionally taxing and trying for many and even those who've "made it" are torn by the stresses of coping with an ever lengthening and expanding work versus "play" or "leisure" time.
I've walked that path and continue seeing a long stretch of it in front of me as I try, just as I did so many years ago, to move ahead, gain a little more, provide and produce.
Our lives, daughter's and mine, are a little better. We went through times when every penny, every item we needed, not wanted, was a major decision as to how long we could "do without" and "make do".
We still struggle but have a little time and a little money we can call "extra" to buy a few things -- not like we see advertised everywhere but at least we can replace some necessary clothing items and do a few repairs we've had to set aside for so long.
Mom taught me to make do; she taught me to remake and reuse. These skillsets were a necessity as we made our way through caregiving for her and my husband.
I see friends and relatives who have had challenges but they've also had health insurance that totally or mostly covered their major events. But then, none of them endured quite the long term stay we did -- 100 days -- when you max out all the resources and the bills keep piling up because "health" has not returned, does not return and more problems occur.
We rarely see behind the curtain of extensive health care problems.
When we're given a glimpse through fund raisers or through TV commercials asking for support, we're shown the positives, the possibilities, and never behind the doors of the families and what they struggle with to make it through every day.
There was a day when Americans married very young 15 - 18. There are still societies where this is a practice and we "more enlightened" societies work to "protect" young women from this life of hardship. It wasn't considered to be that by our society; it was simply a norm; a practice; the way life happened.
My mother didn't marry until she was past 30 -- she was a "spinster", in the language of the day. Most friend and family members had several children by the time she had her first; most of my cousins were either quite a bit younger than I was or quite a bit older.
Those were the days when family almost always took care of their own. Children, of whom there were often more than a half dozen, took in their aging parents.
Then came the days of the "single family household" when a family was considered to be the father, mother and child/children and anyone else was looked at as a "freeloader" or someone who "couldn't make it on their own".
It hasn't been that long we've actually had "places" where our aged population "were placed" to spend "the end of their days".
Click through to gain historical insights into Aging in America and the "system" of Long Term Care for our older population through this portal
Are we really so much better off without the wisdom of our older generation readily available?
Do we really believe we harm one another or each other by having an extended family unit?
Or is that how our society in the United States focuses with so much for so many for so long that we forget the basis of the family is the family, in all its shapes and sizes, all it's inclusions and not exclusions.
We're not different, you and I, or differentiated by where on this earth we live. We're only as different as we create our societies to be and as similar as we allow them.
Perhaps we should learn the lesson of the ages -- not everything that's "old" is disposable, unusable and irrelevant.
Many of life's greatest creations are the most valuable because of the value we place upon them.
Where are you in your journey of life's values?
Are we really so much better off without the wisdom of our older generation readily available?
Do we really believe we harm one another or each other by having an extended family unit?
Or is that how our society in the United States focuses with so much for so many for so long that we forget the basis of the family is the family, in all its shapes and sizes, all it's inclusions and not exclusions.
We're not different, you and I, or differentiated by where on this earth we live. We're only as different as we create our societies to be and as similar as we allow them.
Perhaps we should learn the lesson of the ages -- not everything that's "old" is disposable, unusable and irrelevant.
Many of life's greatest creations are the most valuable because of the value we place upon them.
Where are you in your journey of life's values?
Tuesday, October 13, 2015
Numeroglogy: Aging By The Numbers
YOU are #1 in managing Long Term Care and care giving in residential facilities.
YOU can make a difference.
Statistics taken from the St Louis, Missouri area of the Ombudsman organization, aka VOYCE .
YOU can make a difference.
Statistics taken from the St Louis, Missouri area of the Ombudsman organization, aka VOYCE .
"The long-term care industry has grown rapidly in the past
decade due to growing demand generated by our aging population. This demand
will only increase as we live longer and more individuals reach the age where
they will be more likely to require some type of long-term care.
Looking at the Numbers
"70% of people turning
age 65 can expect to use some form of long-term care during their lives. (U.S. Dept. of Health
& Human Services)
"Baby boomers started to turn 65 years old in 2011.
"The number of older
people will increase dramatically in the period from 2010 to 2030.
"By 2030, the older population is projected to be twice as large as it was in 2000 – growing from 35 million to 71.5 million people. (2009 Long Term Care Insurance Sourcebook, American Association for Long-Term Care Insurance)
"By 2030, the older population is projected to be twice as large as it was in 2000 – growing from 35 million to 71.5 million people. (2009 Long Term Care Insurance Sourcebook, American Association for Long-Term Care Insurance)
"The population 65
years and older is increasing as a percent of total population.
"Of the older population with long-term care needs, about 30% have substantial long-term care needs.
"Of these, about 25% are 85 and older, and 70% report they are in fair to poor health. (Long-term Care: Medicaid's role and challenges, Publication #2172, The Henry J. Kaiser Foundation)
"Of the older population with long-term care needs, about 30% have substantial long-term care needs.
"Of these, about 25% are 85 and older, and 70% report they are in fair to poor health. (Long-term Care: Medicaid's role and challenges, Publication #2172, The Henry J. Kaiser Foundation)
"40% of the older
population with long-term care needs are poor or near poor (with incomes below
150% of the federal poverty level). (Long-Term Care: Medicaid's role and
challenges, Publication #2172, The Henry J. Kaiser Foundation)
"There are over 44
million caregivers, or one out of every five households, involved in caregiving
to persons 18 years of age or older. 34 million caregivers provide care to
someone 50 years of age or older. (Caregiving in the U.S., National Alliance for
Caregiving and AARP)
"This estimate is influenced by growth in the population of older people in need of care. (The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress, U.S. Department of Health and Human Services and U.S. Department of Labor)"
In Summary: Most people want to live longer. Medical Care, Genetic Testing and other advancements are focused on providing a better quality of life, eradication or lessening of diseases or their effects and generally increasing longevity.
However, life happens. Accidents happen. Diseases for which we have no cure and those that are "orphans" -- where research is underfunded or symptoms are not recognized -- will continue to be plagues on world societies and affect care giving for all ages, including but not limited to the advanced in age.
Long Term Care facilities are places where men and women who need constant medical care are housed and they cannot, due to physical limitations, move independently or maneuver without assistance in case of an emergency.
For their sakes and the well being of everyone in Long Term Care facilites, there are actions needed to protect and defend these individuals.
YOU are the first line of defense.
YOU are the voice of those who cannot be heard.
YOU are moving daily, no matter your age as a Millennial or Baby Boomer, into that current darkness, that current hidden and seldom spoken about world of Long Term Care Facilities.
YOU hold the keys of knowledge and the ability to speak out about those places where people receive less than quality care, are treated as less than individuals and whose quality of life is managed and hidden in its inadequacies and inabilities through carefully managed reporting and occasional cover up with appearances far above the every day.
Make a friend in a facility. If only to attend a "public event" and get to know someone who you include in your very busy life.
Their life is a life of waiting, of hoping and of needing connectivity with the REAL WORLD, the world beyond their limitations within the walls, sometimes the grounds or areas just outside the walls.
Many residents have no immediate families nearby.
Many residents wait day after day hoping someone in their family can take the time or find the time to visit.
Volunteering or simply finding a reason -- donating craft supplies, teaching a class of some kind, playing a musical instrument -- these small gifts of time make Aging By The Numbers a time in life to look forward to and give meaning to many who place a value on your time even higher than you do.
YOU are the first line of defense.
YOU are the voice of those who cannot be heard.
YOU are moving daily, no matter your age as a Millennial or Baby Boomer, into that current darkness, that current hidden and seldom spoken about world of Long Term Care Facilities.
YOU hold the keys of knowledge and the ability to speak out about those places where people receive less than quality care, are treated as less than individuals and whose quality of life is managed and hidden in its inadequacies and inabilities through carefully managed reporting and occasional cover up with appearances far above the every day.
Make a friend in a facility. If only to attend a "public event" and get to know someone who you include in your very busy life.
Their life is a life of waiting, of hoping and of needing connectivity with the REAL WORLD, the world beyond their limitations within the walls, sometimes the grounds or areas just outside the walls.
Many residents have no immediate families nearby.
Many residents wait day after day hoping someone in their family can take the time or find the time to visit.
Volunteering or simply finding a reason -- donating craft supplies, teaching a class of some kind, playing a musical instrument -- these small gifts of time make Aging By The Numbers a time in life to look forward to and give meaning to many who place a value on your time even higher than you do.
Wednesday, October 7, 2015
The Privilege of Standing At Death's Door With A Loved One
That most challenging of times standing at what I finally realized was my husband's death bed, assuring him daughter and I would be all right, we'd make it.
It wasn't my first time to attend a family member who was dying. I'd taken steps to ease the transition for my husband's Aunt when she was passing several years ago.
Much younger then, I'd agreed to be her Durable Power of Attorney for Health Care.
She felt her husband, with physical limitations himself, could not and would not be able to help her or make decisions when the time came. I suggested others in the family but she said she felt I would make the decisions she really wanted.
That was a very difficult life experience. Not when she originally made the decision, but when it actually became a reality, a responsibility.
It prepared me in some small way for facing this time, this unwelcome time, walking alongside my husband as far as I could in his end of life journey.
You see, she was Catholic. He was not. She'd been married before and I believe he had also. She wanted Last Rites. She knew he would object.
It was her death, her needs and her wants I believed were more important. I brought her a Priest. A family friend, older and compassionate, someone I felt would help her transition and ease her journey.
When she passed, her husband ignored me at the wake and funeral and didn't speak to me for six years.
However, he remarried within six months of her death.
I know I did the right thing. He did what was best for him; I did what was best for her. That was the responsibility my husband's Aunt gave me.
She was wise in this decision realizing choosing anyone directly in the family "line" would be even harder for them. She knew my husband; she knew me. She knew we both could weather the "storm" that would occur. She was right.
Facing and walking a journey alongside my husband was even more challenging but still a privilege to be with him before we parted in this life.
Before this moment in time, this unwanted, unwelcome life experience, being told the hospital had tried to turn down the respirator but he couldn't tolerate the reduction.
Memories of being told his body systems were closing down, asked to make decisions, knowing his beliefs but still challenged by making that final, non returnable decision to remove the equipment.
No matter what I knew, believed or thought, I couldn't make the decision alone. I turned to my daughter, I turned to my sons, yes, even the oldest who has been a major life challenge, still our family.
I'd called the youngest and told him what daughter and I had been told and I didn't know how long we'd have their father with us but it didn't appear the time would be long.
Both sons decided to come immediately, to be with him, to be told first hand. One was across the country on business and the other on the opposite side of the country where they both lived.
I'd walked this road before. I wanted each of us to speak directly with the medical advisors, ensure there would be no surprises; no misunderstandings.
Each would know, each would have time to question, to agree or object to any and all decisions.
Considering oldest son's actions had not been positive and he'd even stopped communicating with his father and me I still felt some unity, some semblance of what we had before so much changed and so many decisions made causing separation and loss of real communication.
Our oldest son also had a very negative telephone conversation with his father that caused great hurt and stress just hours before my husband went from sitting up in a chair to being placed into what would be the start of his final journey.
I watched my weak and struggling husband cope with the hurt and pain of that call.
Opening our hearts was difficult but he was, after all, family, our son, our first born, the beginning of our truly being a "family".
I didn't want to make any decisions; I wanted them made for me but life doesn't always travel the road the direction we want it to go.
Standing there, watching him leave us, not wanting him to go while realizing there was nothing left to do, nothing but release him from the struggles and the fighting with his body's final struggle. Sustaining "life" through equipment that breathed for him was not what he wanted even if we did.
But life doesn't end right away when equipment is removed even when Dr's assure you the body is "shutting down" and major life systems are failing, one after another.
We should have been better prepared for this event; this watch and wait while life leaves the body and the person you love moves away, never to return to your side in this life.
That's not the portrayal of dying and death we usually see -- it can be what seems like a much slower progression.
Birth and death. Happiness in the first, sadness in the last.
Death is a process that's many faceted just as it is for life and living.
We understand more today about how disease, accident and medical conditions can progress -- to some degree. We're still "hiding" -- to some degree-- the possibilities of end of life.
Is that why for so long I felt guilty? Wondering if and what I did and said was right, for the best -- all those second guessing and "what if's" many survivors go through?
Is it because this journey was not expected; was believed to have been "advanced" by decisions made by those who should have known better, done more and taken more time to instruct, guide and provide -- within the medical profession.
Whatever the process . . . however it came about . . .
Living and dying is a journey of complexities in our society.
It wasn't my first time to attend a family member who was dying. I'd taken steps to ease the transition for my husband's Aunt when she was passing several years ago.
Much younger then, I'd agreed to be her Durable Power of Attorney for Health Care.
She felt her husband, with physical limitations himself, could not and would not be able to help her or make decisions when the time came. I suggested others in the family but she said she felt I would make the decisions she really wanted.
That was a very difficult life experience. Not when she originally made the decision, but when it actually became a reality, a responsibility.
It prepared me in some small way for facing this time, this unwelcome time, walking alongside my husband as far as I could in his end of life journey.
You see, she was Catholic. He was not. She'd been married before and I believe he had also. She wanted Last Rites. She knew he would object.
It was her death, her needs and her wants I believed were more important. I brought her a Priest. A family friend, older and compassionate, someone I felt would help her transition and ease her journey.
When she passed, her husband ignored me at the wake and funeral and didn't speak to me for six years.
However, he remarried within six months of her death.
I know I did the right thing. He did what was best for him; I did what was best for her. That was the responsibility my husband's Aunt gave me.
She was wise in this decision realizing choosing anyone directly in the family "line" would be even harder for them. She knew my husband; she knew me. She knew we both could weather the "storm" that would occur. She was right.
Facing and walking a journey alongside my husband was even more challenging but still a privilege to be with him before we parted in this life.
Before this moment in time, this unwanted, unwelcome life experience, being told the hospital had tried to turn down the respirator but he couldn't tolerate the reduction.
Memories of being told his body systems were closing down, asked to make decisions, knowing his beliefs but still challenged by making that final, non returnable decision to remove the equipment.
No matter what I knew, believed or thought, I couldn't make the decision alone. I turned to my daughter, I turned to my sons, yes, even the oldest who has been a major life challenge, still our family.
I'd called the youngest and told him what daughter and I had been told and I didn't know how long we'd have their father with us but it didn't appear the time would be long.
Both sons decided to come immediately, to be with him, to be told first hand. One was across the country on business and the other on the opposite side of the country where they both lived.
I'd walked this road before. I wanted each of us to speak directly with the medical advisors, ensure there would be no surprises; no misunderstandings.
Each would know, each would have time to question, to agree or object to any and all decisions.
Considering oldest son's actions had not been positive and he'd even stopped communicating with his father and me I still felt some unity, some semblance of what we had before so much changed and so many decisions made causing separation and loss of real communication.
Our oldest son also had a very negative telephone conversation with his father that caused great hurt and stress just hours before my husband went from sitting up in a chair to being placed into what would be the start of his final journey.
I watched my weak and struggling husband cope with the hurt and pain of that call.
Opening our hearts was difficult but he was, after all, family, our son, our first born, the beginning of our truly being a "family".
I didn't want to make any decisions; I wanted them made for me but life doesn't always travel the road the direction we want it to go.
Standing there, watching him leave us, not wanting him to go while realizing there was nothing left to do, nothing but release him from the struggles and the fighting with his body's final struggle. Sustaining "life" through equipment that breathed for him was not what he wanted even if we did.
But life doesn't end right away when equipment is removed even when Dr's assure you the body is "shutting down" and major life systems are failing, one after another.
We should have been better prepared for this event; this watch and wait while life leaves the body and the person you love moves away, never to return to your side in this life.
That's not the portrayal of dying and death we usually see -- it can be what seems like a much slower progression.
Birth and death. Happiness in the first, sadness in the last.
Death is a process that's many faceted just as it is for life and living.
We understand more today about how disease, accident and medical conditions can progress -- to some degree. We're still "hiding" -- to some degree-- the possibilities of end of life.
Is that why for so long I felt guilty? Wondering if and what I did and said was right, for the best -- all those second guessing and "what if's" many survivors go through?
Is it because this journey was not expected; was believed to have been "advanced" by decisions made by those who should have known better, done more and taken more time to instruct, guide and provide -- within the medical profession.
Whatever the process . . . however it came about . . .
Living and dying is a journey of complexities in our society.