Stories on Curt's Human Disease Website

Name of the Disease: Alzheimers Disease

Author: Joyce B Dudash

Story Submitted December, 1999:

City: Sayre, PA

About eight or more years ago my sister and I realized that our mother was getting more and more forgetful. Not just the normal things, but forget to eat a meal, forget that she paid bills and would repay them, repeat questions during a few minute talk. She had been to the doctor and we mentioned the symptoms and problems. He said at the time it was dementia. Both my sister and I talked about remembering mom's mother and her mom's mother as both getting to the point of not knowing the family just a short time before death. It was like a family "joke" that Grandma would say to a visitor that a son or daughter hadn't been to see her in a long time, when in all truth they had just visited within a day or so. When my mother, Esther, started to do this, I began to worry even more about her living alone. My sisters daughter decided to move back to the area and move in with mom to take care of her. My niece laughed when mom took 3 hours to make a meal for herself for she would forget what she was doing. It was her job to see to it the place was clean and mom was clean and cared for including getting her meals. After a few months mom collapsed early one morning, but had the fortitude to call my sister to come help her up. Mom fell/collapsed right by the phone. Mom did not believe that anyone was living with her all the months that my niece and husband lived with her, that was why she didn't just call out to them. Mom had urinary tract infection and evidently had it for a period of time, so she lost her potassium and sodium levels which caused the weakness and the fall.

Mom had no sense of pain or discomfort of the infection. After a 10 day stay in the hospital mom was allowed to go home. The doctor said she would be best off in a nursinghome for the loss of her electrolites caused such weakness in her legs she was unable to walk. My sister and I decided to try taking care of her at home. Actually it was on my sisters shoulders to get the aides and nursing care. She prepared mom's split level home so that mom would be on the middle floor area (Living room and bedroom) The doctor had told us she probably would not walk again. Boy! Did mom fool him! Within one week mom was walking up and down the stairs, but we still had to have around the clock care for her. She went for over 32 hours on a 20 minute cat nap. Night wanderings were her next situation. After two weeks at home and exhausting all the nursing care places and people we could get and a cost of over $1200.00 a week, my sister and I decided to put her in the local nursing home where not only both my sister and I graduated from that building, but our mother taught elementary school there also. Mom is still in that home after five years. Mom is finally getting to the point where she cannot walk well alone. She has the weakness in her legs from time to time. Sometimes she knows us, sometimes not, but she always seems to know my husband.

The first year she was in the home during the holidays, she began to fail rapidly. She wouldn't eat and of course lost weight. The only time she would eat was if we made homemade soups and my husband fed it to her. She wouldn't eat for me, but for a male she would, specifically my husband. It seemed odd to me that about the first of November Mom would start to go downhill and by the middle of January she would perk right up again. This happened three years straight. Last year she was good healthwise all year long aside from the colds, etc. But seemed to be doing better.

During those first months mom was put in the nursing home, she would always ask about how one of her brothers or sisters were and they would be the ones that had already passed away years before. She went through the period of needing to go see mom and pop for she was being bad not to go see them. They also had been dead for years. When I would carefully tell her they were gone, she would answer right back, well I know that, or I should know that. It was difficult to converse with her because I hated to get into anything that would upset her like deaths or loss's of family. Mom is still difficult to converse with mainly because she isn't "in there mentally" to understand what you say. She has good days and bad days.

The biggest problem I have with this disease is if my mother, Grandmother and Great Grandmother all have had this memory loss--I am bound to get it if I have the genes that produced it in them. Correct? Mom's older brother did not have the loss of memory like her, her two living sisters still have fair memory, but they both have had cancer or fibrous tumors of the breast. All three of mom's sisters have had operations on the breast, one died of cancer, two are living and mom has no signs of the problem. So if I look at the family history on health, it all depends on the gene you inherit.

I am forgetting and notice changes that scare me, but I am afraid to talk to anyone about it. I would get scoffed at in our area, even though it is suppose to be a noted medical facility. Most of all I am afraid to speak to my husband about it for we have two personal care homes that we care for people and they come first. He doesn't act like he believes me when I say anything to him. So I just feel alone with dealing with this issue. I have spoke with my sister and we both feel we may have to deal with this in our own lives sooner than we want. I have found the book 36 hour day a help in dealing with mom's situaion and as I mentioned we have two personal care homes with more than one Alzheimers residents.

May I expond on one of the residents. Ruth is her name and she is a wonderful quiet lady. One day she called for the caregiver to come up to help her in her room. She wanted her to take a towel and shoo the chickens out of her closet. They were making noises and problems for her. Later Ruth who has a curly hair do started putting her head under the bathroom sink faucet to make it recurl only she refused to let the caregiver take a towel to dry it off. So one time she did that and had to call for the caregiver to come up with the umbrella for it was raining in her bathroom. She is now putting dirty clothes in the sleeves of her clothes in the closet and in drawers. We don't darn leave clean or dirty clothes in the laundry area (near her room) or she gets them and puts them in her room. She hides them.

With mom when she first went into the nursing home, she was Miss hospitality. She would go into the nurses station and empty their refrigerator of their food and want to pass it out to the other residents. One time she told us that she counted the beds and the people and there was not a bed for her so she could go home. Another time she wanted to know why the families of all these kids weren't worried about them not coming home from school. Many times she had to say she wanted to rest for she had taught all day.

This showed us her mind set. Mom and dad had lost a daughter, Lois she was 5 yrs old, before my sister or I were born (I am the youngest) and that was a time period that mom went though I believe in her mind after first arriving at the home. For many months mom never spoke of dad. He passed away in June of 1982. She still acts like she doesn't know who he is. My children and grandchildren have visited her and she doesn't know them at all. Even though my daughter was quite close to her for many years, mom acts like she doesn't know her. Mom is still alive bodily. But how can one say they are alive in the brain when it isn't functioning?

Love your parents as they are. Love them even though they don't seem to know you. Lean on other family members for help and guidance. This disease is a horrible way to live. Take each day as you can. It is difficult to deal with the changes.

Join support groups. They do help.

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