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.