A major network newscast reported this week that Nursing Home Care now exceeded an average of $91,000 a year. I wonder how many civilians out there have any idea whatsoever how much care for our AD spouses cost. Alzheimer Care is not the same as Assisted Living by any means. The add-ons are another factor, over and beyond any monthly quote. I have two thoughts here. The first one is that the nursing home fees figure in the extra time they must spend with an AD patient, the extra care they demand of the staff and the security issues involved. With that being said, each of your families need to know what a valuable asset you homebound caregivers are. $91,000 a year PLUS all of the other work you do, bookkeeper, house manager, driver, I cannot begin to list everything.
What is worse is that for many of us, because we are on the cusp income-wise, we are not eligible for Medicaid, unless we spend down all the funds we had saved for our joint retirement or for whoever survived the other.
I do not understand why Medicare or Health Insurance will not cover a portion of this cost. A good care facility charges more than most working people's annual income. Even though it's been five years since my DH died, it still makes me MAD! Five years have passed and there is still no caregiver assistance in insurance policies.. and Long Term Care Insurance only kicks in after they cannot feed themselves, dress themselves, walk unassisted and toilet themselves and something else I forgot! God Bless The Caregivers!
I agree with everything you said, Nancy. I'm going through this right now. We worked so hard to save a little for our retirement and it must be spent down before we get any help. As a matter of fact, I had a call the other day from a company that does dental work on residents at my husband's long term care facility. They asked if I wanted them to check my husband's teeth. I asked if my dental insurance would cover the cost. No. They didn't take that imsurance; they had their own. If I would like, I could buy it from them, at $78 per month! Can you believe it? $78 a month. Medicaid patients would get their care for nothing. So, in addition Ito the thousands of dollars a month I pay for his care, I would have to pay more monthly to get his teeth checked. This, in addition to the Depends I buy monthly and everything else he needs. Oh well. It's only money.
One of the biggest challenges facing an Alzheimers spouse is to figure out how to arrange for your loved one's care without becoming impoverished yourself and not having the resources you need for your own old age. The middle-class population is in a Black Hole--too much money to qualify for Medicaid, but not enough to be able to pay privately for nursing homes. The trouble with Alzheimers is that it goes on forever, and the patient needs more and more care as time goes by. And that costs money.
My circumstances were unique, in that I am a registered nurse and was 25 years younger than Larry. My plan over the 14 years of his increasing dementia was to work and save money as long as I possibly could, and then to keep him home with aides in place as inexpensively as I could, while I provided the rest of the care. Needlesss to say, as the disease progressed, this became harder and harder to do. I had help that most spouses don't, in that the people I worked with as he went into the later stages were a lot of help. The last four years of my nursing career I was the regional trainer for a private home care agency. They let me hand-pick the best aides and closed their eyes to me taking them privately "off the books." (Not something I recommend, but the only way I could afford the high hours he needed.) Once we decided--with Larry's input--that he would no longer go to all the specialists he used to see (cardiology, neurology, the internist)…because he basically just wanted to be left alone and stay home…he was adamantly against placement, and, demented or not, made that very clear…one of the doctor's did me a favor and made house calls. He was a European doctor, a little old-fashioned, and understood perfectly that Larry just wanted to do things the old-fashioned way and stay home without a lot of interventions…just be comfortable, and let nature take it's course. After a while, as most of you know from so many of my other anguished postings, we made a geographical move from NY to the Heartland, and Larry ended up with an understanding doctor here, care at home by myself and our son-in-law, and eventually four months of Hospice care at home, billed 100% to his Medicare (a financial blessing) until he died at home as he had always wanted.
So I managed to stay financially afloat and am in fairly good shape, but the family received a good deal of money and material goods in exchange for helping with him, and my net worth is approx. half what it used to be. Also, because I left the work force three years before full social security age, I lost three years of a pretty good income, and my social security check will be lower than it could have been.
Forgot to say that I'm a New York State twenty-year retiree, so am on a NYS pension. Also have a piece of my first husband's military pension. So that's what I'm living on…will probably take my half of Larry's social security check in the fall when I'm 66 and full retirement age for social security, and delay taking my own SS check as long as I can…hopefully til age 70…to try to make up for the fact that I left the workforce early. Hope this isn't TMI, but finances are such a huge worry for Alzheimer spouses. I'm just sharing how I did it. (Just about killed myself, too, but you all know that.)
Elizabeth, You stated you would probably take your half of Larry's social security,as a widow you should recieve 100% of what he would have gotten. My hb is still alive and on medicaid in nursing home. Their cost right now is $260.00 per day, that's over $90,000 per year, who can afford that? Our savings are gone, very hard to survive both financially and emotionally.
Nancy, I am so glad you brought this topic up; finances are an overwhelming concern for 99% of we spouses. Of course nursing home and assisted living costs vary by state and region. We're in the Northeast and nursing home care starts at $110,000/year and that's in an ok nursing home. Assisted living in a dementia unit is about $75,000/year. As you said, more than most people earned while working.
Like other middle class people dealing with this illness, our savings disqualifies us for any assistance, including those services offered by the Area Office on Aging, so not only are we paying for his care (live-in aides) and medication but also the maintenance and upkeep of the house and yard which my husband used to do. And because he was 58 when diagnosed and disabled his social security is certainly less than it would have been had he worked to full retirement age. Factor in that I too left the workforce long before my own retirement age, that's years of unrealized income we could have had and can never recoup. Don't misunderstand, I am grateful we were able to save for retirement and have those funds available for his care, but at the spending rate to care for him, that money won't last that many years. To say I'm anxious about finances and my future is an understatement!
I have written to senators, congressmen and even the President about the emotional and financial impacts on families caring for someone with younger onset dementia to no avail. If I'm lucky I get a form letter, otherwise nothing. It's so very frustrating-they have no real understanding the havoc caused by this illness.
Elizabeth, I did forget that you must have been married 10 years to get full benefits. Or sometimes a first marriage might qualify instead. Best to go to ss office and talk to them. Good luck.
Yeah, I was married for forty years--twenty to one guy and twenty to another. lol The ins and outs are a little complex, and fortunately I should have a decent SS just on my own work history…but it does appear that any spousal/widow's SS benefits would be through my marriage to Larry.
Elizabeth - I think you will have three choices or at least that is what my sister had. She could take her SS, the SS under her first husband or under her third husband. (second was too short). She got the call from SS regarding it. The lady told her under her first husband she would get $20 more a month than the other two choices. So it depends on your earnings if yours in more than the other two. I would drop into a SS office and find out now then you will know.
My wife's ALF cost is what many on the east coast pay for NH. The deal is that when we run out of her retirement account they will move her to NH and apply for Medicaid for us. At that point I will lose some of my retirement funds and some will have to go pay down my mortgage to help preserve my money. But we need to wait 4 years or there will be a 10% penalty for early withdrawal. Since my wife is disabled (by dementia) we can draw down on her retirement accounts without this penalty. My eldercare attorney says that my mortgage is my best tool to protect my assets.
I can't contribute to my son's college education (he starts in the fall) because educating adult children is not an allowable use of money in the 5 year look back. It is a transfer of money to someone else and if she went on Medicaid he would have to pay me back everything I contributed. I wrote that in my appeal to his school's financial aid office plus the monthly ALF costs. Even if he isn't awarded any more money (he has only been offered unsubsidized loans so far) I hope my letter makes someone cry. Fortunately we saved all of his SSDI money so he has a good start to paying for college, I am sure there are many kids accepted who are worse off financially than him.
And I'm in the lovely catch-22 (I think many of us are) where drawing down on retirement accounts increases our income on paper. Money taken from these accounts are counted as income, the fund withholds 24% of every withdrawal for taxes, which makes my income even higher, on paper. And the higher our income, the smaller the % of medical expenses can be deducted (you can only deduct medical expenses that are over 7% of your adjusted gross income). So I want to use as little of the retirement funds as possible.
Medicare and health insurance does not cover long term care because they were not designed to do so. Private health insurance doesn't cover lots of things, such as dental care, and Medicare is based on it. If they did cover LTC then premiums and taxes would be much, much higher.
Keep in mind that as a well spouse you are entitled to certain assets under Medicaid. You home (as long as you live in it), 1 car and $X. If you have an annuity in your name only you get to keep the income. The amount of money varies by state, the maximum set by the federal govt is a little over $110,000 and many people don't even have that much money when they retire. So when you apply for Medicaid you learn to preserve your assets by paying down your mortgage, buying a new car, do house repairs and/or enhancements. You can put your assets in a trust but I do not know what is involved and if this needs to be done 5 years prior to applying for Medicaid. So while you are worse off due to required spend down you shouldn't be broke. And without Medicaid you would have lost everything.
My son knows well to expect no financial inheritance from me. Oh, he can have the comic book and games collections.
Another thing you are allowed to do is travel. If the spouse is well-enough to do things like be taken back to Europe to visit the relatives…this is the time to do it. Or if the caregiver can park the spouse somewhere for awhile and take a cruise…or whatever…go see the Eiffel Tower (joke, sort of)…these expenditures are allowed. As Paul said, you can keep your house--so you might as well fix it up. Same thing with your car--I heard one lawyer say that this is the time to buy a good, new car (to drive back and forth to the nursing home…sigh.) The last time I checked, the look back period for a Medicaid trust to preserve assets was five years. That is something I didn't do, and I wish I had. When it was still early enough to throw our assets into a trust, I didn't feel right about "grabbing" the assets to protect myself. I felt that they should be left in both my and Larry's name, as the funds would be needed for his care. Boy, was I dumb. I could have protected myself with a trust…and still accessed the funds as needed to pay for his care. I left myself extremely vulnerable. Doh! I'm lucky I didn't end up penniless and working til I'm a hundred and two.