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VNA of Care New England
VNA of Care New England

In Her Own Words: Living With Alzheimer’s Disease

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Margaret* was diagnosed with Alzheimer’s disease ten years ago, at the age of 79. Here, her daughter describes her mother’s condition, which led she and her sister to the difficult decision of admitting her to the Alzheimer’s unit at a nursing home. Margaret worked in hospital administration for 32 years and spent many of her retirement years volunteering at the hospital and staying active in church and community activities.
What was your first sign that something was wrong? What symptoms did your mother experience?
She was forgetting more and more. She also became insecure in doing things she had always done, like paying bills, responding to her mail, fixing meals, normal things. She would say, “I just can't do that.” She couldn't put things together in her mind anymore. It kept getting worse. She would be in the car going to the grocery store and realize she didn't know where she was. She would call my daughter or me and we would have to try to figure out where she was and talk her through getting back home. She had also started getting up in the middle of the night at 2:00 or 3:00 in the morning, she'd get her coat on, get her purse, and walk the streets.
What was the diagnosis experience like?
I was taking her to her doctor appointments at that time, and I told the doctor about how forgetful she had become. He wanted to understand what was going on, so he asked me for examples. I told him about how she was wandering out in the night, how she would get lost when she was driving, and sometimes, she would even forget where she was going.
The family doctor recommended that I take her to the nursing home for an Alzheimer’s evaluation. They evaluated her and confirmed that she had Alzheimer’s. At first they put her in a regular room, but within a few weeks, she started to wander off, so they had to put her in the locked area of the Alzheimer’s unit.
What was your initial and then longer-term reaction to the diagnosis?
When we first took her to the nursing home she said she didn't want to be there, and wanted us to take her home. We told her, “ Mother, we fear for your safety. We're afraid someone could hurt you, or you could hurt someone else.” We told her she needed to stay there for a while to see if she could get stabilized to where she wouldn't wonder off. But the Alzheimer’s just consistently got worse, so she ended up staying there for the long term.
It's been ten years since she was first admitted. She would cry a lot and get frustrated with herself and with us, but we would tell her that she needed to be there for her own protection. It was a few years before she settled down, and seemed content at the nursing home. Now, I think she would be uncomfortable if we took her out of the home—she feels safe there.
How is Alzheimer’s disease treated?
My mom is on medications, but I'm not exactly sure what they are giving her now. There are certain medications I don't want her to have because of the side effects. They also do play therapy with the Alzheimer's patients. They have one room that has been made into a playhouse. Mom spends quite a bit of time in there just playing in the play kitchen and playing with the dolls. The staff will do play activities with them, like tossing a balloon back and forth or kicking a ball around on the floor with their feet. These activities help with their motor development.
They also have music therapy where they sing and move to the music. It's amazing that these people can't remember who they are, but can remember all the words to a song. I hardly ever find my mother in bed. She's always up doing some kind of activity, which I guess is a good thing.
Did your mother have to make any lifestyle or dietary changes in response to Alzheimer’s disease?
The first big change was taking her driver’s license away. She was so angry, but it was necessary. It was a few months later that we had her evaluated and admitted to the nursing home. She didn't really make any dietary changes for a while, but in the past year, she has to have her food pureed to prevent her from choking. Other than that, she eats a healthy, well balanced diet.
Did your mother seek any type of emotional support?
My sister and I are probably her main support system. My sister visits her three to four times a week and I usually visit her twice a month. Some of the grandkids are in town, and they visit her occasionally. She also has visitors from her church that see her off and on. Actually, I would consider the staff at the nursing home a good support system. They have really been good to mother. When we first took her there, one of the nurses told us that it would be a good idea to buy her a doll, or teddy bear, or some kind of stuffed animal. We bought her a doll, and she carries that doll around with her all the time and is very protective. She gets mad if anyone else picks it up or even touches it.
Does Alzheimer’s disease have an impact on your family?
My sister and I were having to do a lot more for her, like paying her bills, answering her mail, and picking up groceries. We didn't mind of course, but it was hard to see her having to be more dependent on us. It was a difficult decision to have to put her in a nursing home. We knew how important her home was to her, but it got to the point where it just wasn't safe anymore. My sister had a harder time with it than I did. Until mother started walking the streets at night, my sister wouldn't even talk about a nursing home. She couldn't admit that mother was sick.
Sometimes mother will get hostile and moody. One time my sister bent over to kiss her goodbye, and mother slapped her face. My sister was so upset, but I told her she can't take it personally—mother can't be accountable for her behavior, she’s sick. When she does things like that, she doesn't realize what she's doing. I think now both my sister and I feel relieved. We know she's in a safe place, and that her needs are being met. We don't worry about her getting out and wandering the streets at night or getting lost. She was so vulnerable. It's amazing nothing bad happened to her.
What advice would you give to anyone living with Alzheimer’s disease in their family?
The most important thing is that you keep them safe and healthy, even if that means putting them in a nursing home. It's best if the family can stay united. You can't think about what you want, but you have to think about what is best for them. You also have to keep your sense of humor.
* Not her real name
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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