My Mother's Illness Made the Whole Family Sick

As anyone who has had a family member with Alzheimer's or other forms of dementia knows, the condition affects the whole family.

I can't even remember when my mother started her slow slide into dementia, but it was many years before she died. As I recall, the last 30 years of her life showed a progressive lessening of her mental faculties, but of course a certain amount of that comes with the aging process.

My mother was never one to eat right, exercise, or pay much attention to anything regarding her health. She had her last child at the age of 42 and from that time on, became so obsessed with him that nothing else seemed to matter a great deal to her.

Her gargantuan efforts to make his life perfect and to see to his every need were to be admired, but in his case, were his downfall. He grew up to be a helpless, dependent creature who has not known what to do with himself since he lost his protector/provider.

My parents appeared to have a wonderful marriage until my father was stricken with rheumatoid arthritis at the age of 55, and was forced to retire from his work as an auto mechanic. Mother was always the world's greatest worrier, and the financial burden placed on them by my dad's health problems gave her more to worry about than she could handle.

From that point on, she showed less and less ability to deal with the day-to-day problems of living. My brother attended college for two years at the local junior college, with the intention of becoming a pharmacist. When he went away to pharmaceutical college, he lasted two weeks before he loaded up and moved back home, where he stayed for the rest of our parents' lives.

Mother wouldn't leave the house at all during the time he was gone, for fear he might need her and call while she was out. Only recently did I learn that she was constantly calling the college and having him called out of classes and otherwise driving him to distraction, to the point that he just gave up.

Meanwhile, two of my sisters had problems that I thought pushed Mother the rest of the way over the edge. She couldn't deal with small problems, and the really big ones were just too much for her.

Mother became fearful, and wouldn't allow a window to be opened in her room, even during the extreme Oklahoma summer heat. She would not allow her bedroom door to be opened, nor a fan to run. My older brother built a heavy vent to cover one window, yet let air in. It would have been impossible for a person to come in the window or even to see in it. Still Mother would not let the sash be raised at any time.

The walls and ceiling of her room became encrusted with mold and mildew. I scrubbed the mold off with bleach and removed the door from her room to the hallway. Of course she didn't like having the door removed, but we feared for her health because of being shut up so tightly in the room.

At some point, she started losing things, not simply misplacing things as we all sometimes do, but losing them forever. One can only assume they must have gone out in the trash.

Then came the point where she started hoarding food. Bowls of food started disappearing from the table, only to be found later under her bed. I think that came from deep in the recesses of her mind where lurked shards of memories of hungry days in her childhood.

Where she had once loved my dad deeply, she now had him confused with the father who had abused her as a child. She often attacked my dad physically, and had no kind word for him at any time. I know she never treated her own father that way, but must have felt the desire to do so at the time he was abusing her.

In earlier years, Mother always cooked a wonderful dinner for my dad on his birthday, and he was welcome to invite anyone he wished to. But that changed along with everything else. I remember having a birthday dinner for my dad at our house while Mother was still able to walk well. She thought it had been merely a dinner invitation, but when she realized it was to honor his birthday, she stalked out and walked home, a distance of about a mile.

She could never stand for any of us siblings to get together without her, accusing us of "getting together to run me down" if she learned of it. In short, she made life miserable for the whole family.

She also lost face with and alienated most of her friends at church, and eventually quit going at all, preferring to stay at home and send my brother out for groceries, etc. She had never been one to go shopping much or get out much for any reason than to go to church, but by this time she virtually never left the house.

My dad had recovered from his rheumatoid arthritis enough to get out of bed and do a little work, and he started repairing lawn mowers at home. This made him feel productive and useful, and enabled him to visit with his customers, which was the joy of his life. But Mother's frequent violent outbursts directed at him from the back porch intimidated some of his customers to the extent that they quit coming.

A neighbor told of seeing mother attack Daddy with an iron rod when he was on a riding mower and scraped the edge of the back walk. The same neighbor later reported seeing her on the back porch sans clothing early one morning. Mother was always one of the most modest people I ever knew, so it was totally unlike her to be seen that way.

The thing that made Mother's dementia so hard to understand was the fact that she had been a very intelligent and talented person. She had been a very good seamstress and always made many quilts which she took pleasure in giving away. She grew beautiful flowers which she loved to share with others. But long before her physical limitations slowed her down, her mental state crippled her.

One of the last times I knew of Mother trying to prepare a meal was typical of her efforts at that time. They had household help till around noon, and the helper would try to leave something that could be warmed up for the evening meal. But for years, my parents had eaten "breakfast" three times a day, and Mother didn't seem to be able to completely give up the habit.

I went by their house late one evening in time to see my dad sit down at the table for supper. On the top of the stove was a pan of canned biscuits, which had been placed around the circumference, with two eggs broken in the middle of the pan. They had been baked that way. On top of the stove was a pan with two canned biscuits in the middle. They had been fried like eggs.

For a second there was a flash of shock on Daddy's face. Then he took a spoon and dipped out one of the eggs, took a biscuit, and started eating as if this were an everyday occurrence.

Eventually, Mother started running away "to go home." My brother would drive the car to catch up with her and use all his powers of persuasion to get her in the car. Once she took her sweater and her Bible and started walking towards the church a couple of blocks away as she had often done in past years when she attended a Women's Missionary Union meeting on a weekday.

The first few times that happened, my brother came to the church across town where I was working at the time, wanting me to go out and talk to Mother. I would ask her where she was going and she would say "home." When asked where home was, she would give the name of the little town where she had grown up.

When it happened at a time when I could get loose, I would go to their house, lead Mother inside, and show her her collection of small cups and saucers and pitchers displayed on the shelves Daddy and I had built her for that purpose. I would ask her whose they were and she never failed to say, "Mine." Then I would point out that since they were hers, this must be her house. That would usually pacify her for a few minutes.

Mother took to pacing the floor, dragging a leg behind her because of a worn-out knee. Doctors wanted to replace the knee, but we knew she would never be still long enough to allow it to heal. Where she had been a big-boned, large woman, her weight dropped to 110 pounds.

She refused to bathe, and it fell my lot to bathe her. This was a struggle which left me exhausted and dripping with sweat. My older brother had made a contraption consisting of a swiveling boat seat attached to a board which fit across the bathtub. If I could get Mother's clothes off her and get her to sit in the seat, I would swivel it around and put her feet in the tub, then spray her off with a shampoo hose. She actually seemed to enjoy it once we got into it, but I always dreaded it up to that point, as she would hit me with anything she could get her hands on when I tried to undress her.

Some of my best memories of my mother are actually from those times. I would feed her what I could get down her, give her a bath, tuck her into bed, kiss her on the cheek, and tell her goodnight and that I loved her. She couldn't remember who I was, but she would say, "I love you too, Precious. I sure do." Normally she was never affectionate towards any of her children, other than the youngest, and never called us sweet names. I believe that was a result of her painful childhood, and I always knew she loved us. But I did enjoy those bedtimes.

Where before Mother would never wear bright colors, especially red, because of her Irish coloration, she learned to love them. Where she had seldom worn pants before, I now kept her dressed in sweats because she had lost her modesty. She especially liked the bright red sweat suit I bought her.

My dad's health failed fast in his late 70's and early 80's, and he became unable to physically cope with Mother's condition. My brother who was still living at home had a stroke and heart attack and was diagnosed with cardiomyopathy, which is potentially fatal. He just wasn't able to hold up under the strain of keeping up with Mother and trying to help Daddy what he could.

Mother reached the point where she forgot to use the bathroom, or maybe she didn't recognize the need to do so for what it was. Apparently she relaxed when she went to sleep and let nature take its course. Every morning her bed was so wet it required all the bedding to be laundered, as well as another bath for her.

It was Daddy's decision to put Mother in a nursing home. It was the hardest thing any of us had ever done. But by that time, she never knew where she was, anyway, so it didn't make her that much difference.

Once in the nursing home, it took three aides to give her a bath, as she put up such a fight. They wondered how I had done it alone, but I think even in her present state of mind, she realized they were strangers and didn't want them to touch her.

When Mother first went in the nursing home, she enjoyed the church services which various groups brought to the home. We were told she could sing all the verses of all the hymns they ever sang.

She could remember the words of the songs, yet she couldn't recognize her family members or say what she was trying to say. For several years she had been to the point where she would try to say something, and her eyes revealed that the gibberish that came out of her mouth was as confusing to her as it was to the listeners.

After Mother had been in the nursing home for 8 months, Daddy's health failed to the point that he had to join her. I had intended to bring him to our house and care for him, aided by a helper who would work half days and allow me to work half days at my job.

But his doctor refused to release him to my care, saying I would get him home and realize I couldn't take care of him, and then he would refuse to go to a nursing home. So he would release him from the hospital only to a nursing home.

I spent all my lunch hours from work at the nursing home, trying to do what I could for my parents. My brother was in and out several times a day. It broke Daddy's heart that Mother wouldn't let him get near her; she threw a fit if she saw him anywhere in the home. But when she died after 8 months there, Daddy immediately forgot how she had treated him and chose to remember only the good times.

There is no advice I can give to anyone who is dealing with a family member with dementia/Alzheimer's, other than, as my mother often said in her better days, "Just try to do things so you'll have as few regrets as possible."

In some places, there are programs designed to help in such cases. In our small town, no such help was available, so we just had to muddle through as best we could. Without the help of God, I don't know how any of us would have survived.