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Taking Care of Yourself
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The Complete Guide
Excerpts from the BookOn Caregiving
If there was such a thing as Caregivers Anonymous, the first step in the program would be to get rid of that little voice inside you that says, I can do it all, I am responsible for everything, and whatever I do, it's never enough.
Of course you want to make your parent well, make her happy, make her safe. In fact, if it were possible for you to be with her every minute of the day, perhaps you would be. But the truth is that you can't personally do everything that needs to be done for her, and trying to do so will only exhaust and frustrate you without really helping your parent over the long haul.
So how do you use your energies most effectively? If your mother has a sudden and severe illness, of course you'll want to be there. But when her needs are more chronic, when you find yourself taking on more and more responsibility over a matter of months or years, you must step back, take a realistic look at the situation and draw some boundaries for yourself. Determine what you can reasonably do for your parent and, more important, what you have to stop trying to do. As hard as this is, you may be surprised to discover that setting some limits will relieve your guilt and ease some tension. And you will have more patience and energy for those things that only you can give.
For a long time I visited my mother twice a week, but I was always running and always tired. I started to dread each visit and I was angry at her because I felt it was all her fault. She was ruining my life. Then a friend said to me, 'This isn't her fault. It's your fault.' And you know, she was right.
On Medicaid and Nursing Homes
There is a myth that anyone who is on Medicaid will automatically receive inadequate, unacceptable nursing-home care. It's true that the plushest nursing homes do not accept people on Medicaid. It's also true that most other homes limit the number of Medicaid patients they will accept. But plenty of attractive, well-mannered nursing homes accept Medicaid patients about one-third of all nursing homes have at least some Medicaid patients.
Remember, an expensive nursing home isn't a guarantee that your parent will get loving, devoted care, just as a run-down exterior doesn't always mean shabby care. Appearance is an important clue to what kind of service is provided, but the quality of care comes from the people who work in the facility the philosophy of the administrators and the devotion of the staff.
Many of the residences that accept Medicaid favor self-paying patient and admit only a small number of Medicaid patients. A nursing home with 200 beds, for example, may admit only 15 or 20 Medicaid patients at any given time. Consequently, to get your parents into one of the better Medicaid-certified homes, you need to get his name on waiting lists early or help him set aside enough money so that he can apply as a self-paying resident. If your parent has some savings enough to cover at least six months of nursing home care, and preferably more he will have a far better chance of being accepted by the home of his choice. Once he is admitted, he cannot be discharged when he goes on Medicaid, even if those beds set aside for Medicaid patients are full.
Once your parent is in a home, you can see to it that he gets the best care possible by establishing a rapport with the staff and monitoring his care closely.
In the early stages, it is difficult to distinguish between dementia and normal aging. The symptoms of dementia can be fairly innocuous at first and most people compensate for minor mental slipups with reminders and notes, or they find excuses for their errors. Oh, I'm sorry about our date. I was sure we said Tuesday. Social skills are usually the last to go, so during short visits a person with early dementia may seem perfectly fine. He may chat about old times, and remember who's who and what's happening. Families and friends, who don't want to believe that something might be wrong, are more than happy to dismiss a slightly disheveled appearance or a few memory lapses.
At some point, however, the problems become hard to ignore. The dementia begins to interfere with relationships and the details of daily life, such as shopping, paying bills or selecting clothing. Your parent might lose a particular skill an avid crossword puzzle fan may have trouble filling in the blanks, a lifetime golfer may fumble over selecting the proper clubs.
If you suspect dementia, think carefully about what your parent was like before. Are these problems really new or did you simply fail to notice them earlier? All of us are far more aware of memory slips in older people than in younger ones. When Grandpa loses his hat repeatedly an alarm goes off, but there isn't even a second thought when a teenager keeps losing his.
Generally, in dementia, a person's memory doesn't just slip in, it disappears. He doesn't simply miss an appointment, he insist he never had one. He doesn't just lose his glasses, he forgets that he wears glasses. He doesn't forget who spoke at a meeting, he doesn't know he ever went to a meeting.
In addition to memory problems concerning specific facts, a person with dementia may easily become lost or disoriented, even near his home or in another familiar place He may have trouble with language, so he will grope for the right word, use the wrong word or resort to gibberish. His emotions may become heightened and irrational, and unpleasant personality traits can become amplified. He might also become accusatory, critical or uncharacteristically aggressive. He may have trouble sleeping. And he is likely to have trouble concentrating, reasoning and making decisions. Whatever the symptoms, they usually grow progressively worse.
Your parent is gone. He was old and sick, and it was probably time. Yet the loss is jarring. Your world has changed. A big piece is missing.
Grief rolls in like a series of waves, washing you in sorrow, confusion, anger, relief and regret. It may pulse through you evenly or crash down on you when you least expect it. If you were close to your parent, you may feel as though your very core has been assaulted and that life will never be the same again. In fact, it won't be. With time, the hole will grow smaller and less painful, but a bit of it will always remain.
You can't control your grief, shake it off or speed it up, and you shouldn't try. Grief is a necessary and valuable process that allows you to accept this loss, say good-bye to your parent and move on with your life and other relationships. It is not something to race through or escape from. Allow yourself to feel it in your own way, and at your own pace.
I have kept myself so busy since she died, perhaps because there has been so much to do, perhaps because I want to be distracted. But now I find myself crying sometimes when I'm driving home from work. During that quiet time alone, the reality sets in that she's not here anymore.
Excerpted from How to Care for Aging Parents. Copyright © 1996 by Virginia Morris. Reprinted with permission of Workman Publishing.
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