Question:

In February 2000, I had extensive back surgery to remove vertabrae, have hardware inserted, and fusion done to hold everything together. In December 2000, I went back into surgery to remove the hardware and have more fusion. In July 2001, I broke my pelvis (right side) front and back when I tried to untie a shoe lace. Due to no physical therapy (surgeon's choice) after each surgery, I bend forward at the waist which has caused other problems . . .not to mention the pain. He was diagnosed with Dementia with Parkinson's Lewey-Bodies. I have been his sole caretaker and advocate through all this. He is 77 years old now. Since his diagnosis last February, I have tried to find descriptions of the "3 stages" of these diseases. This has proven frustrating, because as I now understand, these disorders have lives of their own . . . basically. My quest to understand is becoming more of a need these days mainly because I am less able to meet the growing demands of being his caretaker. I've recently checked into nursing facilities, but am obsessively unable to let him go to one. I'm basically awake 22.5 hours out of each 24 hours a day. He falls, gets into stuff, etc. One of the big problems, is the expense of these places! My husband is on MediCARE, so he would be private pay.

Answer:

1. Get to an Elder Law specialist attorney as soon as you possibly can, to see about preserving your assets, should your husband or yourself need professional care sooner than you think. Medicaid will pick up after Medicare ends, or your husbands assets are gone, but there is process to go through in applying for it, and the legal stuff needs to be in place, so you don't end up penniless. Any old attorney won't do. It is a special area of the law. This is essential and you need to do it NOW. 2. Look into day care for your husband for right now. It might be the very thing that allows you to get some rest, do some shopping, get some legal advice, apply for medicaid, or whatever else you need to do to insure your own health and peace of mind. If there is no adult day care in your area, get some outside help. The best kind would be somewhere where you can leave him there for a while, so you get some real rest. But you can't keep on at the present pace and expect to do it for long. 3. Even if you are committed to not placing your husband in a nursing care facility, look around, get familiar with local places, and put your husbands name on the list, because if something happens in the meantime, where he needs care right away (and don't think for a minute that it can't happen) they will stick him in the first available place, and you will have no choice. 4. You think nobody can watch him like you can, and that is a common misconception, but incorrect. Nursing homes are set up so they can't get into things like they can at home.

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