I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I was interviewed by a reporter writing an article about the costs of Alzheimer's Disease. After reading the blog, please post your suggestions to the question at the end of the blog.
Cost is horrific! Just now trying to get DH placed, but doctor can't admit him to hospital just for ALZ. He has no other medical condition to admit him. So,I would have to do it on my own. The outfront costs is prohibitive for me - 2 months or more just for room/board - nothing else, is about $15000. The medicaid procedures are absurd, different answers depending on who you are talking to. It's just a complete mess. Looks like I'm here for the long haul, doing it all, 24/7 with no real help. Sorry, didn't mean to vent on this thread.
Joan, as always you did a superb job explaining the financial burden most of us face, even if we've been very responsible and saved what we thought "was enough money" for retirement. When I talk to people about the costs, they just refuse to believe if you've saved a "substantial amount of money" that it can be gone in only a few years. I tell everyone all our retirement savings, probably including the house (after I die or am forced to sell because I cannot afford the maintenance and taxes) will go to DH's dementia care and I will end up in poverty. Don't get me wrong, I am grateful we have some assets but to be forced into poverty at an age when you can no longer make enough money to rebuild a nest egg is just not right. I know, I'm preaching to the choir.
Sorry for the rant...but right now I don't have any real suggestions, but I will think about it.
I have not posted much in the last 3 or 4 months. DH has been going to a residential facility for daycare two days a week. DH has steadily gone downhill with incontinence, ability to do anything for himself, etc. Three weeks ago he was hospitalized with a mild heart attack. In retrospect, I should have just kept him home as it was very minor. From there he went to rehab because the hospital had kept him on bedrest. After 3 days he was literally thrown out of rehab as he was able to get around on his own and they had to keep an eye on him as he was wandering into other rooms trying to get people of of bed; even the ones who couldn't walk.
Your situation is very similar to mine. I have been advised by the alf facility where I will be placing my dh in two weeks that he is ready for hospice. I can't believe it as he is mobile and eating well. DH is 87 and I am 82. My body is completely tired out from assisting DH out of bed, trying to dress him, etc. My son was here from Colo. and he says enough is enough. They don't want me sick also. There is no way I could handle this to the end by myself. I would need 24/7 help and the cost of that is prohibitive.
I don't know where all this will end for most of us. All we can do is say our prayers.
Cost of placement will be high but I will pinch pennies. I must place DH while he can still walk because it would be difficult for placement otherwise.
Vickie, I'm sorry but I think that's a bunch of crap.(Not you.) My DH didn't have anything else them matter with except for AD, our doctor had him admitted for test . They had him in the cardiac unit for three days and then to the nursing home. I will say that I think my doctor did have some "pull" with the local hospital. Am elder attorney wanted $6,000 to do the paperwork for Medicaid. The nursing home did it for nothing.
Vickie, I'm sorry but I think that's a bunch of crap.(Not you.) My DH didn't have anything else them matter with except for AD, our doctor had him admitted for test . They had him in the cardiac unit for three days and then to the nursing home. I will say that I think my doctor did have some "pull" with the local hospital. Am elder attorney wanted $6,000 to do the paperwork for Medicaid. The nursing home did it for nothing.
Carolyn, he might could be admitted - but it would be probably just for 'observation' - which medicare and insurance does not pay for now. Lots of changes on admittance to hospital for which Medicare will pay. I can't afford to have him 'observed' for 3 days and then have to pay for it. I agree, it's all a bunch of crap. I'm tired, I'm weary, my back hurts.....well, you all know how that goes.
I don't believe there is a society acceptable solution to the catastrophic costs for families of alzheimer/dementia patients. The average taxpayer does not want to spend money for adult babysitters. Until the false stigma that alz/dementia is only an "old peoples" disease is erased no changes for financial aid will occur. Nobody cares about what our loved ones contributed to society in their past. They are just seen as financial burdens in the future. It is easy to understand how most people have no clue as to the costs or the hoops that must be jumped through for assistance. A lot of family members with first hand knowledge of alz are still in denial about the costs. I would like to see some medicare and insurance dollars that are currently spent on useless neurological testing, useless stage assesment, and on overprescribed medicines go toward financial help for physical assistance. I think that would be more beneficial for patient and caregiver.
Joan---I have thought about the last question, and the only "answer" that I can come up with unfortunately will not help those of us already in the journey. The only true answer is for the country to commit the resources to research to PREVENT the disease, or perhaps put another way, to at least stop the progression that results in the enormous cost of care. And what you are doing, education and advocacy, is critical to that answer, because until the public and our representatives understand the unbelievable cost of 24/7 care, which most people don't, then they won't understand the cost issue. And prevention is truly a bi-partisan issue---arguing about who pays for the cost of care is, sadly, still a partisan issue, although it should not be. And as always, thank you for your continuing effort to advance all of these issues.
I was posting my comments while AliM was posting. I totally agree that as long as alz/dementia is seen as an "old peoples" disease, no progress will be made to the financial assistance issues. One "benefit" that I have in trying to get people to listen when I advocate, is explaining the cost of caring for my 61 year old husband with advanced dementia 24/7 for the past 7 years since his diagnosis, compared with the fact he otherwise would have still been working and thus paying into the system. But few really understand the cost even with those figures.
Every time the new healthcare law is mentioned anytime anywhere, political arguments erupt. The last thing I want is for this discussion to turn into a polarizing political argument over Pres. Obama and the healthcare law. So I am just going to say that I do not believe the law addresses long term care options. If anyone would like to read the law and provide us with actual facts stated in the law, that would be welcomed. Otherwise, all "Obamacare" arguments can be hashed out on the alzspouse group on FB.
Thank you for your understanding.
I agree with AliM on the reallocation of funds idea.
It's been three years since my AD husband had to leave his work and about two since I had to leave mine to take care of him. We were doing pretty well saving for retirement and planned to have the mortgage paid off by the time we both retired at 65. But since this happened in our early 50's we're short about 15 years AND we've already had to dip into retirement funds every year just to make ends meet. I can no longer make financial plans because I have no idea if we have 15 more years or 5 more years.
There are so many other daily worries and so much energy goes to managing his needs while keeping myself well enough emotionally and physically to care for him that I've had to stop worrying about money. It goes. There won't be enough. Yep. I'll do my best to be frugal and smart but after that I just have to kick money worries down the road. Sorry, no big ideas here ... yet!
When I read all your comments it makes me wonder why we bother working hard and saving when poof it is used up paying for care. If you have no money then everything is paid for.....this is just so screwed up. My heart goes out to you guys. And bury your money in the back yard where gov't can't find it!!!!
Given the demands on Medicare as more and more baby boomers turn 65, as presently constructed I don't see how Medicare could take a larger role in helping to finance the long term costs for those with Alzheimer's. Having said that, however, I think that is the only solution. Medicare needs to be the provider of last resort and health insurance policies for those too young for Medicare must be restructured to cover more of the costs for those with dementia. Currently, medical needs for patients with serious diseases, those in comas or on life support, etc. can easily run into the millions of dollars. These costs are routinely covered to a great extent by health insurance and Medicare. When Clare was hospitalized with heart issues over the years, we received prohibitive bills but our health insurance paid for the lion's share of the costs. Some way, somehow, I think this has to be the eventual solution for those with Alzheimer's and other forms of dementia. It is unrealistic for society to expect 'normal families' to exhaust all of their savings to pay for all of the costs associated with long term care for those with Alzheimer's. Or, given the enormous costs of assisted living and nursing home placements, maybe the structural changes needed are for Medicare and health insurance to pick up the lion's share of costs associated with 24/7 in-home help to avoid the need for out of home placements. Perhaps new regulations tied to a family's assets or annual income can more equitably resolve some of these decisions on just how much help the government should provide. Private long term health care insurance can be extremely helpful, but most people who need such policies won't and don't have them.
I would like to see the author listen to us on the financial cost of this disease and what is and is not covered. Then look into the changes the new healthcare law will make. See if there is going to be improvement or not. Then write about how worse or better it will be for those of us with no funds vs those with millions like Glen Campbell.
I held back in posting on this thread to see if anyone would see the solution as I did. And yes, Acvann said it. If Medicare and private health insurances pay for people in comas and on life support, they should also cover expenses relating to dementia. Yes, the costs would be enormous, but the government spends freely on other, less vital, issues. The strange thing is (and correct me if I'm wrong) I don't remember hearing anyone advocate to change Medicare on this issue (at least, not during the last 8 years after Steve's dx when I have been paying attention to such things). The federal government has made several attempts to encourage people to buy private long-term care insurance, but I don't think they have resulted in much. I see the problem as a form of discrimination against people with dementia and their families--other diseases are covered by Medicare, why not this? I believe that some of the European countries have a much more equitable arrangement for covering the costs.
I also concur in what the others have posted. medicare needs to be adjusted and rerouted to cover AD since so many of other diseasea are. I know for a fact that my brother in law suffers a terminal cancer and his medicare and supplements have covered most of the tremendous costs associated with his care. so yes adjustments are necessary as this disease will soon be prolific among even the younger groups as well. divvi
I did not mention it in the blog, because I wanted your ideas uninfluenced by anything I suggested, but changing Medicare to include long term care coverage was one of the ideas the reporter and I discussed. Of course our Medicare premiums would have to rise , but perhaps LTC could be offered as an optional service for those who are willing to pay more into the system.
If I remember correctly a program called Class was part of the new affordable care act to provide LTC insurance was initially in the bill but was deleted before it passed because it was found to be too expensive and unsustainable. It would not have benefited anyone already on Medicare. In my DH'S NH care medicare only pays for a monthly check-up by the doctor. Fortunately his private LTC policy pays for half but I have to personally pay the other half for his care. It doesn't seem to matter whether you qualify for medicaid, have a long term care policy or pay privately the poor house is the end result for most of us. I have reached the conclusion that since I grew up extremely poor I have the wisdom as to how I can survive being poor again in my old age. At age 66 I am already at the brink!
Ali'm you correct that LTC was part of the ACA but was quickly dropped, though I can't say why. Medical research is part of the ACA but, as important as it is, it won't help us on this board.
While Medicare is an option for many of us under 60 if the person is on SSDI I don't know if that would be the best route to go.
Joan- At first I thought the cost you listed were way to high, then I remembered my husband's lost income, which is in the middle of your estimate.
We are fortunate to have long term care insurance which pays for most of his care. His disability covers the rest. The long term care does have a time limit and we all know it's impossible to predict how long our loved ones will last.
I think I will be ok financially since I have a good job and other sources of income, but I worry about our children's future. The cost of care for this disease can easily destroy the best financial plans.
abby* We had to wait over two years for Medicare to kick in. That is also a big problem, along with working and caring for DH I had to worry about DD and how I would provide for her. It is not only retired couples who deal with this. EOAD is very real and so many (not anyone here) do not want to talk about it.
abby* Please don't delete your posts. Your opinions have value. We all have traveled different roads on this AZ journey. And who knows, someone just reading here and not yet a member may find comfort in your words. And help them join us.