Monday, April 21, 2008

"The Long Goodbye"

Alzheimer's Disease is often referred to as "the long goodbye," and with good reason. Unlike most other terminal diseases, which kill the body while leaving the mind and personality relatively intact, Alzheimer's gradually wears away the personality of the patient long before the body itself succumbs to the devastation of the disease. By the time the disease takes its toll on the physical body, the person they once were is long gone.

It is particularly difficult for aging couples, such as my husband's parents, who have been married so long they don't even remember what it is like to be apart. My father-in-law has known for a number of years that my mother-in-law was heading down the same road her own mother had traveled; both of them had cared for her mother as she fell victim to Alzheimer's Disease, and had seen its devastating effects. It was probably five or more years ago that my father-in-law said to us one day, after my mother-in-law had left the room, "Her mind is going." But he always hoped he could keep caring for her at home for the rest of her life.

Sadly, that isn't always possible when it comes to Alzheimer's patients. Some families are able to do it, especially if the well spouse is younger, or there are adult children who can come help with caregiving. But if, as in my husband's case, there is only one adult child (he has no siblings), and the spouse is older, rather than younger, it becomes a bigger problem.

My father-in-law was coping with it for a very long time. He made sure my mother-in-law was well cared for, and continued to take her places they both enjoyed. They came to our house for visits and he took her with him everywhere. But in the past six months or so, she had started to deteriorate. She was having difficulty walking, partly from her bad knee, but also from the disease itself; people somehow start to forget how to walk. Then came the incontinence; a sign of the next, more advanced, stage of Alzheimer's Disease. But still she was at home.

It all changed on Superbowl Sunday. My father-in-law was stricken ill and taken to the hospital; my mother-in-law was suddenly without her lifelong partner and caregiver. We tried to take care of her for two nights but our house has two flights of stairs so was not an appropriate place for her; plus we both have full-time jobs. We had no choice but to put her into respite care at a nursing home not far from the hospital where my father-in-law was being cared for.

My father-in-law, thankfully, recovered completely after his emergency operation. But my mother-in-law never came out of the nursing home. After she was hospitalized for an infection and returned to the nursing home on Medicare, she underwent rehabilitation -- but she has not been able to walk on her own again, and has now been catheterized in addition to her problem with walking, due to deterioration in bladder function.

It has become obvious that my father-in-law is no longer able to care for her at home. Their home is not wheelchair accessible; it has stairs, there are too many dangers for her there. My father-in-law has not completely regained his strength from his own illness, and even before this happened, the constant stress had been taking its toll.

So now we enter the next phase of the situation: getting my mother-in-law on Medicaid...Medicare is running out at the end of this month and the only way to cover my mother-in-law's care is to qualify her for Medicaid.

Here is where it gets tricky. If you're super-rich, you can just pay a nursing home out of pocket for the duration of the patient's life. If you're completely poor, your family member can qualify for Medicaid immediately.

If you are a middle-class person who has worked hard all your life and saved a decent nest egg, but not a fortune, you are screwed.

My father-in-law worked hard all his life and saved his money so that he and my mother-in-law could enjoy their retirement together. Luckily, he did retire early, at 62, so they did get to travel and enjoy their lives together before her health declined.

But now that nest egg is a detriment to their situation: my father-in-law has to spend down HALF of it before my mother-in-law will qualify for Medicaid.

Now, the easy thing to do is to just pay the nursing home till that money runs down. But of course, no one wants to give money to the nursing home, especially because the money is needed for other purposes. So instead, people who want to qualify their loved one for Medicaid pay for home improvements, pay their taxes ahead of time, pay for their funerals ahead of time, buy a new car...anything to spend down that money. Oh, and one of the things you can use to spend it on is the large fee you need to pay an eldercare attorney just to help you navigate through the Medicaid maze and make sure you don't do something wrong.

Of course, throughout all this, my father-in-law is depressed at the prospect of never being together with my mother-in-law in their own home again. He says they always promised each other they wouldn't put the other in a nursing home.

They have been together for 59 years and never even spent more than a night or two apart from each other until the beginning of February, 2008. Even when my father-in-law was hospitalized once before a decade or so ago, my mother-in-law spent the night with him in the hospital room.

The thing is, if the health care system made any sense, she would be able to stay at home. But Medicaid does not cover in-home full-time care. It ONLY covers nursing home care. And home care, 24/7, is almost as expensive as care in a nursing home - with the difference being it isn't covered. So the only choice is for the patient to be institutionalized. And no matter how hard the nursing home caregivers try, care in a nursing home just isn't going to be as good as care in the home. As it is my father-in-law is over there every day for about five hours a day. But he can't be there all the time, and when he's not there, things don't get done as well.

I don't blame the nursing home for this; the one we found for her is really very nice and the people there obviously care about their patients. It's just impossible to watch people with dementia every minute of the day or to be prepared for everything they may do. One day my mother-in-law suddenly tried to grab a railing and get out of her wheelchair as she was being wheeled back to her room, and fell. Luckily she was all right. But another time she may not be.

Before making the final decision to keep my mother-in-law in the nursing home, my father-in-law asked us, "Am I doing the right thing?"

I don't know if he is or not. But he's doing the only thing he can do under these circumstances.

Let's hope that when when our generation reaches this stage of our lives that the options for end-of-life care are more flexible and that more of us can stay in the homes we love with our families instead of being confined to nursing homes and institutions.


John J. said...

I don't know if he is doing the right thing or not either, but my hopes go with you guys.

Take care.

Florinda said...

We went through this with my mother, including the whole Medicaid-qualification angle (which is ridiculous, but under current conditions, almost impossible for most people to avoid). And I agree that you can't know whether a nursing home is the "right" thing, but sometimes it really is the best of the bad options.

I'm sorry your family is going through this now.

kattie said...

Get her out of there. My mom was medicaid and we took care of her for 2 1/2 years until a social worker suggested she go into a nursing home for help in walking. She only lasted FOUR months. They killed her. She fell twice, they always forgot to turn her oxagen on, then they gave her sespis and they never feed her. They never gave her water. It is a death senctence for the them. I live with this burden on my shoulders everday of my life. I cry all the time. I ask GOD why did I do this to her. It was only supposed to have been short term. They caused her foot to die. Then they wanted a feeding tube put into her stomach. Then they took her her to a hospital and was suppose to look at her foot and they went behind my back and put the feeding tube in and she had renal failure and they did nothing to save her life. She went through excurenating pain for 18 hours and finally some rude nurse came in with morphine and gave it to her through her tube and she left us in seconds.......... she died in my arms.....................I had no idea of what went on with her. They lie and keep secrets from families.. If I could do it all over again I would of never put her in a nursing home they are just death traps for them..........

Mauigirl said...

John, thanks for your good's always a hard decision.

Florinda, thanks for your thoughts as well - I appreciate it. We have been considering so many other possible options but this seems to be the only one.

Kattie, I hear you, and understand your concern - this is similar to what happened to my husband's grandmother. She was in the home for a couple of months and then fell and broke her hip - after she was operated on for it she never came back to even the level of cognizance she was before, and died not that long afterward.

There are many issues with trying to care for my mother-in-law at home, one of which, sadly, is my father-in-law's stubbornness - we had tried to get him to move up near us (they live an hour away) and into an apartment or condo all on one floor so as to make things easier for my mother-in-law to get around, and so we could help him out. He still refuses to move even now, so there was no possibility to have her live at home even if we could have afforded to hire all the care in the world - she is in a wheelchair and is not going to walk again.

If he continued to try to care for her at home it would have killed him - as it was he had lost ten pounds and then got sick himself. And he would have spent all of his remaining money hiring people and there would have been the stress of worrying about them taking proper care of her as well.

I know no nursing homes are perfect by any means but we did look at a lot of them and this one seems to do a good job. They do seem to tell us if something happens (such as the fall she took the other day). They diagnosed her urinary infection and got her to the hospital in time.

Best of all, my father-in-law is there almost all day - they can't get away with much as he calls them on any little thing they are forgetting to do or neglecting. And at least he doesn't have to try to get my mother-in-law to take a shower or get into bed and get yelled at and sworn at by her as this is how she reacts when anyone, even he, tries to get her to do something she doesn't want to do.

They can at least enjoy the time they have left together.

My father lived his last year or so in a nursing home as well - my 85 year-old mother couldn't care for him at home after he got up in the middle of the night and broke his leg. (He had Alzheimer's too). It wasn't ideal but it was the best thing for her, and he seemed to do all right there. He lived to be 93 and died of a combination of Alzheimer's and old age.

Mauigirl said...

Kattie, so sorry, I should have said first of all, I'm so very sorry about your mom and all you went through with her in the nursing home...

Fran said...

Oh Mauigirl, this is heartbreaking at the personal level for you and DH, and DH's father and mother. I am so sorry.

What have we wrought in this nation? It is evil I believe.

My thoughts are with you all.

Anonymous said...

MG - I can't imagine how difficult a post this is to write, much less be a part of this experience. If anything, it makes me thankful that my own aging parents are living with my older brother in your neck of the woods (NJ). I wish you the best.

Larry said...

This is such a sad story and that is a frightening disease.

Our government sends billions to other countries every year, yet they refuse to take care of those who become helpless.

Christopher said...

This is unimaginably tragic for everyone involved. There are no words to make it right.

When I read your post I am angered that the U.S. can spend $12 billion a month on Bush and Hillary's Iraq war but we can't provide Federal dollars to find a cure or at very least, effective treatment for this terrible disease. Of course, caring for the American people has never been a top priority for this piss-ass government.

Now that the country is tottering under a $9 trillion dollar debt, safety nets like Medicaid and Medi-Cal are left to struggle with endless cutbacks from state governments and the Feds sure don't have the extras ca$h to make up the shortfall. Not with $12 billion a month going to Iraq.

People like your in-laws have really been at the receiving end of an unfair and short stick. There are no good solutions. Nothing makes sense any more and every thing seems out of control.

Randal Graves said...

We pay lip service to family and the quality of life in this country, but the system is set up to benefit everyone but the family and the quality of life.

Dr. Monkey Von Monkerstein said...

My heart goes out to him and to the both of you.

Cosa Nostradamus said...

Sorry for your trouble. Hope it somehow turns out OK. You seem to be doing the best you can under the circumstances. Don't beat yourself up. Some things we just can't do much about. Death, disease and old age being the big three.

Those anthro- and archaeology guys define civilization, and even humanity by how folks treat their dead, their dying, their sick their wounded, their disabled, their children, their elders. Let's hope they can't even find us under all the styrofoam and plastic bags.

Us boomers will really be up against it pretty soon. Deliberate hard living and spend-thriftery, combined with increased life expectancy and a big population boom followed by a big bust will push this beyond all previous crises, national or familial.

If we don't find a cure for Alzheimers, there will be millions of Boomers disabled by it. There will be no money and little will to care for us all. The controlling nature of Boomers may lead to some seismic medico-legal shift, or semi-underground movement toward mass euthanasia. Or, maybe just another trendy business opportunity.

Imagine the adverts: "Hi, I'm Mick Jagger for Youth-In-Asia. When I can't rock and roll any more, I'm boogying on down to my local Youth-In-Asia parlor and checking out in style. Seventeen ways to go, and all of them a blast! When the time comes, I'll see you there! Pleased to meet you, hope you guessed my name!" [hobbles off]

Mauigirl said...

Fran, thanks for your thoughts...there is no easy answer. One part of me feels really guilty that DH or I don't just take a leave of absence from work to care for her, but then we wouldn't be able to save for our own rapidly approaching retirement years. (Since we weren't the thrifty savers his parents were!)

Spartacus, thanks for your comment also - and I'm glad your parents are with your brother. I am grateful also that my mom and aunt are right down the street from me, safely ensconced in their senior citizens apartment building, and that they, thankfully, seem to be holding up well mentally.

Larry and Christopher, you both make an excellent point - if this country wasn't wasting billions of dollars in Iraq they could afford to care for people like my mother-in-law.

Randal, what you say is so true. And other countries, that don't go around tooting their horns about their family values, have much better values when it comes to caring for their elderly citizens.

Dr. Monkey, thanks so much for your kind words.

Cosa Nostradamus, thanks, I'll try not to feel too guilty about the whole situation.

You're completely right, the Boomers are going to have a real problem if a cure isn't found by the time we all start getting to that age. I am hoping some new seismic shift, as you said, may happen in terms of how we will deal with it - hopefully not mass euthanasia, although to be honest I always did think that when my father reached a certain point of his dementia that it would have been kinder if we could have put him out of his misery. (Right now my mother-in-law is still enjoying many aspects of her life so I don't feel that yet about her.)

Your Mick Jagger ad really made me laugh out loud - great way to lighten things up a bit. I can see it now!

I really appreciate everyone's comments and thoughts. I wanted to write about this because our situation, which is just one of many across this country, points out the inequity in the system that punishes middle-class people, and how the Medicaid system is not set up to the benefit of the families or the patients.

We really need to reshape the system to better accommodate people's varied needs especially as the Boomers age and more and more will need this type of care.

Anonymous said...

Thank you Mauigirl. My heart goes out to you too. I am glad I found your site. This is my first time blogging. I feel the whole world shoud know how mistreated my mother was. She was a precious Angel and I know she is still my Angel looking down apon me. It's just so hard thinging about the she died............

TomCat said...

Maui, first I'm so sorry you family has to deal with this crisis. Is he making the right decision? Under the circumstances, I doubt that there is a "right decision" to be made. He is making the best decision he knows how.

This underlines our need for a universal, single-payer health care system, based on need, not greed.

Mauigirl said...

Kattie, I'm glad you entered the blog world and that you found me!

Tomcat, thanks for your thoughts - so true, it does underline the need for a total overhaul of our health care system.

The Future Was Yesterday said...

Whatever the care, and wherever, this disease is still a horrendous way for the victim to die.

Dr. Zaius said...

My condolences for what must be a very dificult situation, and thank you for explaining the issues.

two crows said...

I went through this with my mom, too.
and, I agree, it's impossible to know if putting her in a home is the 'right thing' but sometimes it's the only possible thing.

my thoughts are with you during this heart-wrenching time.
I strongly recommend hospice care as soon as it can be arranged for your mother-in-law. they were a god-send for my mother [who died 3 weeks ago].

whenever she would have one of her 'spells' [low blood-pressure, sleep-apnea, etc.] the nursing home would call 911. [it had to by law until the hospice care was in place.]
then, she would be taken to the hospital, be totally mystified by the experience, start pulling tubes out of her body, etc.
the hospital didn't have the staff to sit with her-- so they put her in restraints and she panicked.

after hospice care was arranged, the hospice staff visited her regularly. when she had a 'spell' they would be called instead of 911. they would gently call her back.

finally, when she went beyond being called back, they sat with her and read to her. if they stopped, even for a moment, she would kick -- like a baby kicks.
I'm certain she knew they were there-- knew she was being cared for --as she moved further and further away.
I'm sure it made a huge difference in her transition.
again, my heart is with you as you and your family through this time.

Mauigirl said...

Future, it is so true. It has to be one of the worst diseases there is.

Dr. Zaius, thanks for your thoughts and condolences... One reason I wanted to talk about it is so others who may have to go through this will understand what it involves. If people realized sooner what they would be dealing with once a loved one starts to develop Alzheimer's, they might plan for the future better. My father-in-law might have been able to keep her home longer if he'd moved a few years ago to a more suitable dwelling.

Two crows, I'm so sorry to hear of the loss of your mother. Thank you for the advice about hospice - we will definitely ask about it. My mother-in-law doesn't have a medical directive but I did talk to the nursing home's doctor and she said we wouldn't have a problem refusing extraordinary care (e.g., a feeding tube). I didn't ask her about hospice care but the nursing home is having a "family night" next week where we go there and they talk about their services and you can ask questions so I'll ask about it then.

Distributorcap said...


this is so upsetting on so many levels -- i know what you must be going through and how hard this is for your entire family

what we do to the elderly and infirmed is criminal..... and the fact that the govt is spending billions on a useless immoral war while our own people die of alzheimers, aids, heart disease etc. is just unreal

my father watched his sister deteriorate beyond all hope (they lived across the street from each other) -- my uncle was in a wheel chair so he couldnt take care of his wife -- my mother and father had to feed, change and care for my aunt until they just couldnt do it anymore --- they would get calls from neighbors that she was walking the dog at 2am and 3am and 4am etc. My father took the dog away since it wasnt being care for. Then they would see her trying to put a leash on a duck thinking it was her dog. -- it was all so tragic

finally her non-mobile husband agreed to put her in assisted care near their son in California (they all live in Florida). I dont know how they got around the insurance/medicare thing -- but it didnt matter, within 3 months she died. the unfamiliar surroundings, the lack of attention from her family and worsening illness just did her in. my father to this day is consumed by guilt that he couldnt do more.

this is all so tragic.

Mauigirl said...

DCap, thanks for your comment and for sharing the experiences of your family. It just goes to show how inadequate the care options are right now. All of these are tragedies; and to your point, those who tried to do their best are left feeling terrible guilt that they couldn't do more.

denverdoc said...

Oh MG, I feel your pain. What a heart-rending decision that so many of us must make.

Home care for my Mom through an agency 24/7 was roughly three times what a top of the line nursing home cost. I hired the best caretakers away from the agency, then lived in fear that one of them would wrench her back OTJ without worker's comp insurance as back-up.

When angel of a home caretaker had to call in sick once with ailing baby and once with emergency dental work, I knew that I could not supervise the crew at her home any longer. Saddest day of my life the day I put Mom in the NH.

The Hospice people told me in the name of full disclosure that the move might shorten her life. I actually think it lengthened her days as the increased stimulation of light, other people, more socializing perked her up for awhile.

She fell and dug a hole in her arm. The cellulitis didn't kill her. She caught cold from a staff member. That hastened the end, but finally she just decided that she'd had enough.

I feel so sad reading Kattie's story, and yours as well.

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