Alzheimer's Disease - Bob's Story

Bob ’s Story

Alzheimer's Disease: Like a tornado inside the brain

“My wife of 48 years died on March 30, 2000. We had a good marriage that produced 3 children.

Helen started having trouble in the mid 1970s. She had trouble using her fingers and thought she had arthritis. She went to a clinic in our local city and they diagnosed her problem as an onset of Parkinson's Disease. We wanted a second opinion and she went to the Mayo Clinic in Rochester, Minnesota. They confirmed the diagnosis.

She handled this problem with little difficulty until about 1990. She was on medication to help with the tremors etc. She had a very good neurologist and he saw her frequently. He told us that she should not try to run the sweeper, operate machinery etc. She was still able to cook, do laundry, shop etc. She was still driving until she had an accident. She fell asleep while returning from a dental appointment and hit another vehicle almost head-on. She was in the hospital for about a week. She was bruised up and had a broken nose.

After I retired in 1990, we moved to Florida. She was still able to function a little but was having trouble with everyday chores. When we would go grocery shopping she would just stand and stare at items on the shelves. She was unable to make up her mind about anything. It finally got to the point where I had to do all the cooking, shopping, cleaning etc.

She went to a Memory Disorder Clinic and after a battery of tests they determined that she was in the beginning stages of AD. The doctor said that we should probably move back to our home because I was going to need some help from family members in caring for her. We put our home up for sale and sold it immediately. We moved back home in May 1995.

Her AD was coming on rapidly. When we moved into the new home she seemed to understand what we were doing. About the second night there I was getting ready to go to bed and when I went into the bedroom she told me that I couldn't sleep with her as she didn't know me. That is the first time that she didn't recognize me as her husband. I had to put a dead-bolt lock on the front door so that she couldn't get out at night. When she was outside she tried to walk away. I'd let her walk and follow about 50 feet behind. She kept wanting to go home. I tried to tell her that this was home but she still wanted to go home. I later learned that this is common with AD patients.

Her Parkinson's started getting worse. Her one vocal cord froze and she could only talk in a whisper. She had trouble walking as she would lose her balance and fall to the floor. I had to take her to the ER or doctor’s office more than once after she fell and injured herself. I had to watch her 24/7. I had a monitor in her bedroom so that I could hear when she tried to get out of bed in the night. I bought her a lift chair so that she could get up and down better. She couldn't figure out how to work the control on the chair. She sat and slept most of the time. I had her in Depends (adult diapers) and she would have some terrible accidents. I would have to get her to the bathroom, clean her up, get her dressed and wash the clothes. When she was using the bath room I would have to wipe her and she would try to bite my shoulder or neck.

I made a connection with the Agency on Aging. They came to the house and talked with us and were able to send a sitter three afternoons a week, four hours each time. They also sent an aide who bathed Helen, three days a week. I had to pay a small fee for these visits. That was a godsend for me. I was able to get out and go to the grocery store, bank etc. for a few hours. I  also joined a support group on AD that met once a month. I was able to talk with other care givers and tell them what was going on with us and they could tell me the problems they were having.

The most important thing that I did was purchase my first computer. I went on the Internet and by trial and error found sites about AD. I was able to gather much information from these sites. I also found a chat room for AD care givers. I would visit that site every night after I put Helen in bed. I made many very good friends in that chat room. They were all care givers for a loved one. We helped each other immensely. I still have contact with several of them. That web site is no longer available.

In July of 1998 I was diagnosed with prostate cancer. I was given a hormone shot, Lupron, and it made me very emotional. It got to the point where I couldn't take care of Helen properly. My oldest daughter and I visited nursing homes and found one that we thought was suitable. I placed Helen in the home in Sept. 1998. That was the hardest thing I have ever had to do in my life. I felt like a complete failure. I cried like a baby that day. It was so sad seeing her placed in the home. She had no idea that it was a nursing home. She thought it was a hospital.

When she went into the home she weighed around 125 lbs. She couldn't swallow and they had to put her on a soft diet. I visited the home twice daily, at lunch and dinner. I had to see that she was taken to the dining room for her meals. I fed her both lunch and dinner. If I was not able to be there one of my daughters or my niece would feed her. She kept losing weight and when she passed away was down to about 70 lbs. It was terrible seeing her get worse and worse and there wasn't a thing we could do about it. She had bed sores that would not heal, didn't recognize us when we were there and just suffered. Hospice was called in the first part of March 2000. I had no idea that she was in the last days of her life.

In the mean time I was treated for my cancer and it is now in remission.

On March 29, 2000, I received a call from the nursing home at about 6am. They said that Helen had taken a turn for the worse. She was in a coma and was not responsive. I called the children and her sisters and we all rushed to the nursing home. We spent the entire day with her. We kept her lips wet with a swab. Around 10pm that night we all went home except my two daughters. I was back at the home early the next morning. Helen's sister and I were at her bedside and she just stopped breathing. That was in the early afternoon. It was a very sad occasion for all of us. However, we knew she was better off now. No more suffering. No more confusion. No more being scared of things she had no control over.

Helen had a good life and it is so sad that it had to end in that manner. No one deserves this. I think of her every day that goes by. I have many fond memories of her. I wish she could have had a better life at the end.

It is hard to lose a loved one. I have a very dear friend that is in the end stages of AD right now. He is in a nursing home and doesn't know anyone. I feel so sorry for his family. I know what they are going through. I feel sorry for anyone that has to go through what Helen and our family went through.“

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