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Author: sheila727 Big gold star, 5000 posts Old School Fool Add to my Favorite Fools Ignore this person (you won't see their posts anymore) Number: of 150  
Subject: Re: Alzheimer's Disease Date: 2/26/2003 2:43 PM
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My father is 90, and was diagnosed with Alzheimers 7 years ago this coming June. He'd been showing symptoms before that, but we'd put it down to the reversible symptoms of depression and the chronic level of intense stress in his life.

I have several pieces of advice. Become familiar with the Alzheimer's Association website--I noted that another poster provided the link. Locate a geriatric social worker in your parents' community to help them cope with their current situation, and aid in identifying approaching problems and laying groundwork preparations in advance. Your parents are going to need help with your dad, especially when he becomes incontinent. Participate in the Alzheimers Association's "Safe Return" program so that just in case he begins to wander and gets out of the house, it will be very easy for the police to learn his identity and his address and return him safely home. (I did that with my dad.) The Alzheimers Association local chapters have orientation sessions that are invaluable, discussing the symptoms and course of the different dementias, the impact on family members, what you need to know legally, future issues you'll have to face, etc etc. The people talking to you have usually been through this with a spouse or parent. They have been there, and few can truly understand what it is like to have a loved one die like this bit by bit by bit unless they have gone through it themselves. You will also learn exactly what the Association can do for you. You can ask questions. And you'll meet others in your shoes. Next time you're home, attend one of these sessions. Do it with your mother, if that's possible.

You should get a copy of "The Thirty-Six Hour Day," a classic book that provides a view and understanding of what life is like with an Alzheimers patient. It carries you from early through late disease. Don't read the entire book through, just read through where your dad is now, and perhaps a little bit ahead. You'll deal with the more deteriorated aspects as you approach them.

There's nothing fabulous right now approved for Alzheimers, but any medication is more effective the earlier it's begun. Aricept does a little for some, but it's effect tends to fade by 6 months of use. Reminyl has a broader range of action and has been found superior to Aricept both in efficacy and duration of effect. It certainly had more to offer for my dad. Keep your eye out for Memantine (don't recall the brand name), which is in use in Europe and up now before the FDA for approval here. It is pretty amazing stuff. My brother and I were able to get it here (through DARE here in NYC). The FDA has ok'd it for individual home use but the nursing home won't permit it there till full approval. My brother had begun giving it secretly to my dad, who has advanced disease, and the results were astounding. But an aide with a grudge reported him, and he had to stop. It was heartbreaking to see my dad fade again.

If your dad needs to be hospitalized at any point, for whatever reason, however long or short--as long as he is mobile, he needs to have an aide with him 24 hours a day, and it has to be an aide with an understanding of Alzheimers patients. Without an aide, you have a disaster on your hands. And many hospitals don't understand Alzheimers--not the confusions, nothing. I'll never forget one of my dad's hospitalizations while still living at home. He needed physical therapy, but it was discontinued. Why? Because the therapist would show him how to do something and then move to another patient, and my dad would just stand there and do nothing. So I arranged to have a therapist come to his room and work one-on-one with him there. But that's the small stuff. Your dad will wander, he may not be able to feed himself well......and being away from his customary environment is likely to be temporarily destabilizing and exacerbate his confusion tremendously, perhaps to the point of hallucinations. An aide will be able to handle this. You can arrange with the hospital for a nurse or aide, or try to find someone (talk to the nurses aides in the hospital) and make your own arrangements. It's less expensive that way. Make sure you have a backup for the inevitability of an aide not showing at the last minute.

Try your best to be informed a little bit ahead of what's likely to come so that you can prepare. Then you can usually avoid crises. So many Alzheimers families stick their heads in the sand and end up lurching from crisis to crisis. That is terrible for everyone. I don't know how amenable your mother is to a sensible attitude. My mother was impossible, fighting change and preparation every step of the way. We had a lot of crises to deal with that didn't have to have been. If you find a similar situation, hopefully you'll find a way to resolve it.

I don't know how far away you are, but visit as often as you can. Right now is the best time you have left with your father. You can't predict his pattern of loss, as it's different with different patients. With some, recognition of loves ones goes early, with others--like my dad--it seems to hang in their forever. But my dad hasn't been able to speak for the past 5 years, or do anything at all for himself for several years. And he's growing increasingly distant and unresponsive even with the subtle facial expressions I've learned to read.

Don't be uncomfortable at talking about your experiences and feelings to those who care about you, and those who are in the same boat. You need that outlet, that connection, that support.

Good luck. It ain't easy.

sheila
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