Greetings,

I've noticed that most "family" topics are about children. Everything from teething to teenage dating. This is the flip side. Our family is now dealing with my mother in early stages of Alzheimer's. She is 68 and has had general good health for all of her life. Within the past year we have noticed certain things were different. She would be confused about conversations that we've had. She'd have slight panic attacks when questioned about something and couldn't remember. She would forget what she ate. Mom hasn't been totally wacked but enough things have happened and we were getting concerned for her safety, so we made her see a neuologist and either myself or my sister attend all visits with her. Mom seems quite calm, now that she has a diagnosis and realizes that the problems she's been experiencing can be explained. Her medication has helped her confusion.

She seems quite well at work (We work in the same office- she now works part time) and feels best when she is busy. Most anxiety happens at home. My dad has retired and is home 24/7. Although we have information from the Alzheimer's Association to help Dad, he is very angry about the situation. Dad feels that his life as he knows it is now over since he has to "babysit" mom. This is one of the choices that we make when we marry. My dad always thought that the tables would be turned and he would be the one needing care in their older years.

Has anyone else on the forum experienced Alzheimer's? I sincerely appreciate your words of wisdom and suggestions. Your prayers are also very welcome as we venture into this unknown future. Thank you.

-- Charleen in WNY (harperhill@eznet.net), November 07, 2001

Answers

I'm so sorry to hear about your mother. My great aunt suffered from Alzheimer's, and now I have an aunt with it. They were both very blessed to have family members who were able to stay with them and care for them.

The only thing I could offer as a suggestion for your dad would be to hire a nurse to help when it gets to a point that he can't handle it anymore. At least, if that is an option financially for him.

-- Cheryl in KS (cherylmccoy@rocketmail.com), November 07, 2001.

A lot of men seem to use anger to hide what they are really feeling, like pain, worry, panic, wondering if he will be able to cope with this new challenge in his life.

He is certainly going to need a lot of support as this situation develops, probably help in the home, or possibly in the future a nursing home or facility, can be a great relief.

I know my husbands uncle suffered from this disease and his poor wife had to stay awake at night to keep him from trying to find the car keys, turning on stoves and many dangerous things.

This is the one time that a nursing home (if she becomes worse) can really be beneficial to the patient and the family.

I know it is hard to think about, but if your father decides that it is for the best, I'm sure he will apprecaite the support of the family.

-- Melissa (me@home.net), November 07, 2001.

Melissa, you said something that, in my experience, is very true and that is that men use anger to cover other feelings. I would expect that this husband had depended on his wife for many years and he is feeling loss. And we all know "that showing hurt or sadness isn't manly"! (Sad, isn't that?) I'd say that in a few months he'll come to terms with his wife's illness and deal with it better.

-- Ardie/WI (ardie54965@hotmail.com), November 07, 2001.

I feel so sad for you. My husband's Grandmother has it. She is becoming very "wacked" lately. I just cannot imagine the pain of seeing my Mother go through this disease. My prayers for you and your family are on the way up.

-- Jo (mamamia2kids@msn.com), November 07, 2001.

I have no personal experience with this disease, but I can tell you that men frequently express their frustration in an angry way and i agree that as time passes (and with lots of hugs) your father will hopefully learn to cope with your mother's illness. When I started being sick, my darling husband acted weird! He would one minute be bringing me a blanket and the very next minute would act as if I were imposing on him by lying down! Since shyness has never been one of my strong suits, I challenged him on it. Turns out when he is feeling frustrated because he cannot do MORE for me (translate make me all better) he gets angry with HIMSELF. It hurts him to see me helpless at times and out of his frustration comes anger. It's been not quite a year now and he is getting better at it. We used to do so many things together that we cannot do any longer, and now that the kids are grown and gone, we had looked forward to spending all those wonderful afternoons crawling through flea markets and going to auctions, etc....now, we have to see if my wheelchair will work with the situation...(gravel paths are a pain!) I will keep you and your family in my prayers..oh BTW, someone had mentioned a nursing home as an eventuality...we all have different thought on this topic, but mine is that when moms and dads are older and need help, they need family, not strangers. I so admired the Amish for this. One old lady had her bed in the kitchen. The young children played on the bed at her feet and the older girls did her hair and sang to her. She was in the midst of all the family life, even when she didn't know who was who. All of us should be so blessed in our old age!

-- lesley (martchas@bellsouth.net), November 07, 2001.

I do greatly admire my Amish friends for their care of the elderly and disabled. Unfortunately in our society, it is often very difficult to cope with the Alzheimers disease in the home-setting.

My grandmother is in a nursing home due to arthrits, and bone- related troubles, and truthfully she really likes it. There are so many kind people there. She receives excellent medical care. She enjoys the people and the activities, and the meals that she doesn't have to worry about any longer.

She is visited constantly by family members, and while I know she wishes things were different (her health) she feels better not to be a burden to her family. This is her own personal belief.

When she lived on her own, my Mom and Aunt were constatnly worried she would fall or get hurt and no one would be there. They were at her home every day and it was hard on the entire family. She is a people person, and likes the activities. I'm not saying this is for everyone, but it doesn't have to be all bad.

I must say after visiting her regularly these past few years, that the Alzheimers patients can be extremtly tiring. Some of them just never stop moving around. As I said, one of my husbands Uncles suffered from this disease and even with family members and outside help it was almost impossible to keep him from harm. His poor aunt was ready to have a nervous break-down from stress.

Sometimes as the disease progresses, the patient seems to be calmer around strangers than family members. They are generally confused and don't understand what is happening, and this confusion is even more pronounced around people they know and love.

I know this is hard to read, and to understand. Having seen it first-hand it is no fun to deal with. I truly admire those who are able to cope at home, but certainly wouldn't fault anyone who made the decision to use a nursing facility. It is one of the hardest things to watch.

I hate to seem so negative, and I pray thet a cure or medication to slow down the progression is found soon. There will be many hard decisions to face in the next few years, and it is best to think ahead, so when the time comes to make a decision you can be well- informed. When I read about problems like this I just ache in my heart for you all. My prayers at night are long and deep.

-- Melissa (me@home.net), November 07, 2001.

Charleen- I havn't had to deal with Alzheimer's but my Mother in law, who lives across the creek from us has Lou Gehrig's disease-her mind is sound but her body is failing-she can no longer speak-she writes things out on a dry erase board or lap top, she can no longer eat-she has a feeding tube, she gets tired very easily and so on. Both of them have had tremendous difficulty dealing with this (who wouldn't?) and my father in law has expressed a great deal of anger-although its more passive-agressive stuff- he "forgets" her Dr. appoinments etc. Its getting some better now but last summer was very difficult for all of us. I stay with her a couple a times a week so he can get out and play golf-his passion! also make sure he's getting enought nutrious food to eat-he would just eat snacks. We try to be as supportive as we possably can. Also my husbands grandparents live next door-both in mid-80's so far they are doing great, I try to stop in once a day and check on them, or I call them. We also have a set of walkie-talkies that beep that Grandma keeps on her walker in case she falls We (all three households)get together at one of the houses-usully mine, at least once a week for a meal together and we try to talk about things and co-ordinate schedules and medical appointments. It does take patience! I would suggest reading as much as you can about her disease-I now know far more about Lou Gerhigs than I care! but it has really helped me understand alot. Also, if counceling services are available, try to take advantage of them-they can really help.

-- Kelly in Ky (ksaderholm@yahoo.com), November 08, 2001.

My father died December 29th, 1999, eight years after an initial alzheimer's diagnosis. In retrospect, I'm sure he knew he had mental problems several years before, that is, he knew he was losing his mind. Such a horrible thing to be helplessly aware of. The course of the disease is inevitable - continued mental then physical degradation, then death. Some alzheimer's people become sweet. My Dad, a very gentle man, got into denial early (he dismissed things he could no longer do as unimportant), then suspcious (if he couldn't remember something then people were lying to him). I can understand that thinking that everybody was out to get him was less scary than thinking he was losing his mind. When angry he would use curse words we had never heard from him. When paranoid he would get violent. He would be up a all hours of the night roaming around with a claw hammer looking inside and outside the home for people he thought were breaking into the house. We had taken his guns away but a good- intentioned nephew took him to buy a pistol. Within a week he had threatened a door-to-door magazine salesboy while holding the pistol. This was in Dallas: think of the SWAT team arriving two days later, in full black riot gear, face covers and helmets, with guns drawn. Of course, by now Dad had long forgotten everything and was as peaceful as a lamb sitting in his rocker. A totally inappropriate response (a la Waco), hell, they could have called the house. Anyway, 2500 bucks to a lawyer to convince our legal system that incarceration won't behaviourally modify an alzheimer's patient.

A year before his death my parents moved to the small town where I live. Very good (desperate) choice. My mother's own health was now being affected. The local, small town police KNOW and CARE how to deal with these things and actually be helpful. Neighbors do too.

Six months before the end we found an "assisted living center" for my Dad. Dad no longer controlled his bowels, would'nt eat regularly, "escaped" from the house, and it tooks hours to get him to take any medications. My mother was going to die from the stress, and besides he was a stranger to her and she was an enemy to him.

And this is the point to this long dirge, He actually was happier and improved for a while. HALLELUJA! It was a social setting for him which, in the remaining recesses of his mind called for him to act very properly. He was taken to a doctor's office 50 yds away as needed. He got up and ate more regularly. Wandering around was totally acceptable.

At the end there was near starvation in a "behavioural center" (never trust the shrinks), near torture (remember to lie flat and don't move as you enter this frightful MRI machine!) and bill churning in bad hospital, and true understanding and care in a good one. He died under hospice care in a nursing home.

My advice: you can only do what you can do - forgive yourself for what you can't do and get help when you need it; get a will, power of attorney, power of attorney for health care, etc. before its too late. These will eventually be critical. Hospitals can "own" a patient, especially one who can't think or speak for himself. Having an alzheimer's parent has a profound silver lining - it will get you to review your life starting from childhood and , at least in your desperation, seek out a fuller relationship with God.

There are good books on alzheimer's that are worth reading.

-- charles (clb@dixienet.com), November 08, 2001.