Superalone
There was a thread about being superalone but it looks like it has been deleted. I had some thoughts about that. I just watched Glen Campbell's documentary, "I'll Be Me". Two points struck me. 1) The point was made that the cost of AD for the baby boomer generation was going to approximate our national defense budget. 2) A man in his 40's pondered, what help is being done for him, he is fearing AD because it is in his family line.
My impression is this: everyone is searching for a cure for AD, which I don't believe will be coming in the foreseeable future. Instead, we need to devote more attention to the care of AD patients and families. There is much that can be done with the known body of knowledge that we have, we just have to devote the funds.
For example, in reference to the title of this thread, we all know that a diagnosis of AD results in isolation of the PWD and of the caregiver. It has long been a known fact that social isolation results in negative health consequences. A portion of caregivers expire before their PWDs. The isolation can be ameliorated proactively by providing competent and affordable caregiving in various areas, in the home and in adult day care centers. There was a night-time adult care center for PWDs in NYC. Caregivers should not be overwhelmed by isolation to the point of desperation, resulting in mental breakdown and/or physical disease or death!
In the film, Glen Campbell's wife was supported by his children, his siblings and many people in his band that he worked with. He was never alone. Still it was hard on her. The point is, they had all the resources he needed. The baby boomers and those generations coming after need more caregiving resources. IMO, caregiving resources will be more cost effective of limited funds than searching for a magic pill. Don't stop searching for the magic pill, but put more money into caregiving resources that can be immediately utilized! That's my two cents.
Iris
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Iris, well said!!0
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This would help so many individuals and families - huge idea. And surely not as costly as the alternative of ignoring the massive (and increasing) need in this regard.
Way more than 2 cents worth here. Thanks for putting it into words Iris.
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Dementia requires a very very hard look at your finances. For most people they are now poorer than they ever thought they would be. Your first task is to maximize the assets that you can use if need care. That is what elder care lawyers are good at.
do not sell your house without talking to a lawyer
Then you need to optimize care with the remaining assets. private placement before medicaid placement is the trick in many areas That costs 60-120 thousand dollars
you need to conserve that money while caring at homeYou need qualified medicaid advice YESTERDAY
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I agree that is what should happen,but the forecast of the burden of SS,Medicare,Medicaid is gonna be astronomical. Thank you Iris I have been wanting to watch that. We saw Glen live at the Opryland. Quite a few years ago, he had some trouble not bad, I got pics but my camera couldn't get clear picture cause of low light.0
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Add my two cent agreement too. While a cure in important we must tend to the problem at hand
There is a buiness understanding about the need for care. We can easily see that by witnessing the number of "facilities" being built everywhere. There is money to be made.
Problem remains....all the bells, whistles and good food provided do not translate into good care.
Glenn Campbell had good support while he was at home but he was a resident at Abe's Garden.
More about that:
https://parade.com/688264/m-b-roberts/remembering-glen-campbell-his-wife-shares-her-story-of-caregiving-during-his-alzheimers-battle/0 -
Iris, thank you, thank you! Sure have missed seeing post from you!0
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Jfkoc, Thank you for posting this article..
I had read that Glen Campbell's wife faced opposition from stepchildren when she had to place him. Did not know the family also received death threats from fans for that. Can you imagine? Great article. The final segment of it speaks to Iris' point and yours so clearly too about the size of this problem. We here on these boards are just the tip of the iceberg.
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excerpt from linked article:
As much as it seemed like the right fit, Kim still faced another hurdle: overcoming the stigma that she was “putting her husband in a home.” Ruth Drew, director of information and support services at the Alzheimer’s Association, says this is a common problem. “I’ve talked to many people over the years who said, ‘My husband and I promised each other we’d never put each other in a nursing home.’ But when we are in the circumstances of providing around-the-clock care for someone, we learn that it’s not always possible to give good 24-hour care at home.”
Kim knew this firsthand. But Glen’s celebrity meant that Kim and her family received horrible comments—even death threats—mostly on the internet. But every night when she went to have dinner with her husband or—before he lost his ability to speak—heard him say how grateful he was, Kim was reminded that she’d done the right thing.
“I didn’t just put Glen anywhere,” she says. “Our family joined this community. I know these people, I know their families. It was such a blessing to us, to have that peace of mind that no matter what time of day it was, Glen was being checked on and cared for and loved.”
Once Glen had moved in to Abe’s Garden, Kim had a chance to exhale, ever so briefly. She says during this time, more than any other time in her life, she drew on her faith to move forward.
“I don’t know how I could have walked through this without my relationship to the Lord,” she says. “My husband was lost in dementia; it consumed my life. So I had to make a choice to be happy and productive.”
Kim created a support group for people with spouses with Alzheimer’s, started her blog, CareLiving, and, whenever possible, attended ballet classes and her favorite, Dancefix, to take care of herself and relieve stress.
“No one should attempt to go through this alone,” Drew says. “No one can be on duty 24/7 indefinitely. We’re human beings and we can’t hold up to that. Family caregiving takes a toll and there are ways to come through it well by getting information and support.”It’s been nearly one year since Glen Campbell died. Today, Kim Campbell has made it her mission to get the word out about options available to families dealing with Alzheimer’s. She speaks on the subject and is developing a foundation.
“I know how harshly this disease impacts families,” she says. “People were there for me so I want to be there for them. We’re walking through this together.”
Help for Caregivers
More than 5.7 million Americans are currently living with Alzheimer’s disease. That number is projected to soar to nearly 14 million by 2050, according to the Alzheimer’s Association. The impact on those suffering from the disease, for which there is no cure, is enormous. But the effect on those caring for Alzheimer’s patients is almost immeasurable. Some 16.1 million Americans provide unpaid care for people with Alzheimer’s or other dementias. This year alone, these caregivers provided an estimated 18.4 billion hours of care valued at more than $232 billion.
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Excellent points made by Crushed, Jfkoc and Butterfly Wings. I saw the wife, Kim, at an Alzheimer's Association function after Glen had been placed.
To clarify, I wrote my thread to be more about the issue of ISOLATION on the caregiver while the PWD is still living at home. That was what the prior superalone post was about. It was probably deleted because the topic was so painful. My point is to take some of the "looking for a cure" money and spend it on resources to assist the AT-HOME PWD now, so the AT-HOME CAREGIVER does not decompensate and and have a nervous breakdown or die prematurely from isolation and other caregiving stresses.
Iris
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Taking off my Peer Volunter hat - the following is just me on a personal level whose background is Masters Degree RN, Administrator of Patient Care Management overseeing multiple departments in acute med centers with much contact with patients, families and physicians, (was earlier in hands-on clinical care setting), Consultant with Quality Improvement at Home Health, Hospice and other entitities, and who had a Mother, Step-father, MIL and GMIL all with dementia. Thankfully, each had some assets to help with care for awhile; but for some, money ran out.
One big piece remains hanging out there, and that is the lack of interest or just only giving publicity driven "words" that mean nothing in the long haul from our government representatives. Yes; it will be a huge increase in costs with Medicare and Medicaid, but my goodness; look, just look at the uber billions and billions unto trillions being spent hither and thither for so many other things - some not really necessary. There is political in-fighting and it will get worse due to a new election cycle soon to come as those people we vote into office, rather than keeping the nation stable and meeting the needs of the citizens, instead put everything into hanging onto power and that means special interest groups with the way hugely deep pockets that many of our reps are beholden to. I find this dispicable on both sides of the aisle. It does indeed rile me up - I have seen so much strife and grief with families within my profession and also in other ways on a more personal level with many folks in the community at large. I have heard so much grief, heard plaintive cries for help when none was available and seen the very real toll up close. Breaks the heart. It is wrong.
The middle class is the most "stuck." I do not want to hear any blather about saving the hundreds of thousands, etc. and investing wisely - MOST of the middle class and lower income people who are at a huge gap for needed help do not have and never had that kind of money. Most of them are not on public assistance and never have been. Most of them have not spent un-wisely on luxuries. They hang on by the tips of their fingers and sometimes they fall and fall hard.
We need some true and real changes and thoughts that are put into practice about the elderly and infirm in this country; the stats are there for the future of dementia numbers that are rising so fast. It is true, there is not going to be any "cure" or real "prevention" for dementia any time soon - in all probability, not for a long time in years - but the here and now practical help is no way in existence.
Some of the other countries provide the necessary care birth to death and at no cost. Look at Denmark, etc.; BUT to do so, the taxation rate is very high, however, the populations are mostly overall, okay with that. The very real where the rubber hits the road benefits and support are amazing. We do not have a tiny bit of that. Are we okay with getting real help and paying a bit more in taxes? We must take this out of political in-fighting and power-hungry grab mentality in our seats of power to effect any changes in one way or another. How do we do that? Don't know. Making big time noise as a cohesive group and voting are the only way I can think of to effect any change but that is so little and takes so long . . .
A few years ago, the pols in DC decided to support a special program that would be SO helpful for dementia. A special group was put together with the DC folks and some others from the community - I was truly excited to hear that and waited with great anticipation. What did they do? Did "they" put a dollar into direct care? No. What they did was to create a data base of helping contact numbers for the more well known online and on phone assistance groups and placed that online. Big whoop. Nothing we could not find online ourselves or through the Alz Assn. or other venue or from social workers. What a monumental disappointment; but oh my, how they did indeed pubicly congratulate themselves. Witless. Absolutely witless. As it is, that data list is not touted, where is it - and I do not even know if it is kept updated. Just one more nothing in the great sea of nothing dashing against the rocky shores of those in desperate need of help. Even in many states, the at-home spouse of a Medicaid applicant spouse must come to pretty much near impoverishment to obtain services; nothing left for their aging needs.
I had best step stop, this topic does indeed cause me to get non-plussed. Wish I had a magic wand so I could wave it and fix things, but alas; never can find one.
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It is super alone. The responsibility is serious, the decisions hard, and the slow loss of a love is a great sadness.
On the "plus" side there has been enormous growth in education materials available on non-medical treatment. I think most of this growth is the result of the work of people directly involved sharing....PWD and their caregivers.
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The people here, on AlzConnected, are the kindest, most supportive, wonderful group and through their care and support, many have found a place to be heard and even given information for all sorts of practical needs regarding care.
I have so much respect and affection for all here, and I thank the Alzheimer's Association for providing this amazing and helpful place for all of us.
J.
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I have an idea. Let's kick the problem down the road. Maybe someone else will come up with a plan that will satisfy shareholders, special interest groups, and those trying to find a way to keep from dying or losing their health from being a caregiver. Yeah, right!! Buckle up folks. You're in it for the long run.0
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Ed, if only I could find a way to make a difference. Voting seems to be the only tool right now, but it is insufficient for the crisis of needs; how many of us by the way, really know which of our reps on either side of the aisle are working to make a difference of what is being discussed here. I do not know and when I tried to find out, all I got were political publicity sorts of responses.
If I knew a way to contribute my voice to be heard with others, that would be great. It seems so futile, and yes; the special interest groups and the shareholders - the elderly and the others in need are so invisible. Think of the impact on the Young Onset group who have families.
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Iris, I agree 100%.
Jo C - you nailed it when you said the middle class is in the worst position.
We have a tool, The Alzheimer’s Association, as a lobby. Jo C, do you know how much of the well-meaning funding of the Association goes to research? It there a way to influence the focus and direction of the organization to help us caregivers in the trenches get some aid? To increase the focus of lobbying efforts to caregiver support? Perhaps someone would bring this thread to leadership’s attention. Or, is there someone we could contact directly?
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I just thought of something. We know that the squeeky wheel gets the grease. I think that the politicos are indifferent because they are unaware of the scope of the problem. Other communities have been able to advocate for what they wanted. Unfortunately, caregivers of PWDs are too overwhelmed to take on another project. But perhaps a small letter or email campaign would help raise awareness. The one idea that I have is that caregivers send a link to Glen Camobell's documentary to their local, state and national representatives. Suggest that your LO is like Glen Campbell, but you don't have Glen Campbell's resources. You want to see more adult day care centers and more in-home support. Mention the potential tsunami of baby boomer PWDs. Families need help, now!
Iris
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I have no knowledge of what the Assn. is actively doing at this point; their supportive input has been in place, but as of now I am not knowledgable of what dynamic way this may be taking.
Can we expect government directed mega dollars to be plowed into the needs of the people in this needful category? Not to the length and breadth of what is necessary due to the "catching up" which would be mind boggling in numbers.
One of the things that bothers me, is the difference between the states in their Medicaid Long Term Care programs. Some states are sparse but are a bit better at criteria sto qualfy for assistance; others are appalling. Just try getting at-home community care in the special programs is difficult in most states; many of them have very lengthy waiting lists to be able to obtain such help.
When the opportunity was present for Medicaid expansion with the Affordable Care Act, it covered all Medicaid; most of it being not in long term care. Fourteen states refused the expansion. It left so many without medical coverage and leaves many questions. One can use Google to do some reading on the states and what the outcome was for those that accepted the expansion opportunity. It was the Supreme Court that made the decision that Medicaid expansion was not mandatory for states.
The least, very least the feds could do would be to step up and write changes in the Medicaid Long Term Care laws and mandate services and adjust qualification criteria and so much more in all of the states - heaven knows; it is needed in every single state. By doing this with the Long Term Care needs, it would not cover the entire much larger regular Medicaid Program; that may make adjustments more palatable for those political reps writing and voting to pass such laws. May be naive of me, but I am not educated to the inner workings on this and hope springs eternal.
When working to better the Medicaid Long Term Care Programs in all states, they also need to dynamically and heavily make adjustments on the laws governing care and staffing including types of staffing in Nursing Homes including Memory Care and Assisted Living. I remember my hair standing on end when the last administration decided NHs did not need to have Infection Control Nurses. Omigosh! This was at the behest of the lobbiests. That has now apparently changed. As it stands, it leaves much to be desired in many ways. HOWEVER, the lobbiests are hard at work spending many millions in their industries best interests - it's about great big money for the investors and owners. Interesting reading:
Just FYI; the following is a list of other lobbists and the "known" money spent up front in millions:
As for where information source in any links I ever insert on AlzConnected , I have no particular party that I am affiliated with. So . . . if any of you find a magic wand with my name on it, please send it my way post haste. In fact, if a wand does not appear, perhaps a magic lamp with a genie, or even a beneficent leprechaun . . . I'll take anything that is helpful, legal and moral and we can all form a committee to make positive needed changes. And boy; would we ever have a field day putting it all together!
J.
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The Superalone topic was mine, and yes, I deleted it because it had become too painful of a topic.
As caregivers of people with dementia, we are truly on our own. Family, friends, the government, the medical community are not coming to the rescue. Not now, not during our miserable lifetimes, and probably not ever.
I love my country (US), but let’s face it. As a nation, we are too selfish and caught up in the “bootstraps” mentality to ever come up with a solution. Taxation, for the betterment of society, is looked upon as socialism. Old people and their caregivers are invisible, and we will never matter.
Yes, this topic is depressing. The sooner we all face up to the truth of our isolation, the better we can cope with another day. I am tired of false hope and lengthy articles about “help.” There is no help and there never will be. The only escape will be the death of me or my dear wife after this hideous disease has destroyed our lives. No one cares.
Now, I must get back to work. It will soon be time to pick my dear wife up from daycare and begin my night shift as a caregiver. I am sure there will be many diapers to change and laundry to do. No rest for the weary.
This is no way to live.
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HIV/AIDS used to be super depressing, but those afflicted advocated and got what they wanted in a few years. I don't believe it would be impossible to advocate for more help for dementia families. There is plenty of money, but it is going towards searching for the magic pill.
Iris
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