We would like to take care of our mother at home

photo of elderly woman in the garden (PantherMedia / Lorenz Timm) Martin, 46 years old

“We would like to take care of our mother at home, right until the end. We want to look after her as a big community, a big family.”

The first sign was her forgetfulness. But it wasn’t all that bad, so I just thought it was a normal part of growing older. I didn’t associate it with a disease.

My mother used to write about her life experiences. She wrote the stories on a computer, but she stopped using it so much. She wrote less and less, and sometimes asked me how to turn the computer on. Looking back at what she wrote now, you can tell where she started to gradually go downhill. But back then we still didn’t think it was Alzheimer’s or anything because she was still driving a car at that time.

At one point my niece noticed that my mother was very unsure of herself when driving and, for example, took the right of way in situations where she shouldn’t have. That’s when we thought something had to be done. I hadn’t noticed it myself because I drove whenever I was out with my mother, so I couldn’t judge her driving. We told her that the car was broken. She then asked when it would be fixed. She had been independent all of her life and had always used the car to get around. That was tough. But I still didn’t suspect that she had Alzheimer’s or anything.

We thought she had a stroke

Then at one stage we thought that one side of my mother’s face was paralyzed, so we took her to hospital. There she had a neurological examination to see whether it was a stroke, which it wasn’t, but a computed tomography indicated that she might have Alzheimer’s. We spoke to her family doctor and asked what we should do next. He referred us to a neurologist, who then confirmed the diagnosis.

After receiving the diagnosis, we contacted a self-help group for information and support. We wanted to find out what to expect and how to cope with things at home.

My mother is still very physically fit

My mother is still very physically fit and can still get around our village, get on a bus and go shopping in town. She lets me know if she is going for a walk and then I make sure that she is back within two or three hours. The people in our village know her and she asks them for help. She has my business card and an emergency medical ID card in her bag. I also gave her a mobile phone but she can’t use it, it’s too high-tech for her.

We already approached the subject of a living will at an early stage, about ten years ago. I wouldn’t have been able to prepare a health care proxy with my mother at a later stage because I already had the feeling that she no longer understood what was going on then. I became my mother’s legal guardian too. The health care proxy was very helpful here, and meant that the process of becoming her legal guardian was easier. A legal representative looked at the health care proxy and the process went smoothly.

It was high time that I took custody

She often complains that she doesn’t have enough money. But she buys two or three of everything. When she was still able to, she used to sign contracts for things that door-to-door salesmen sold, such as large amounts of dietary supplements and wine. She did that a lot before I became her legal guardian. So it was high time that I took on custody of my mother, although I didn’t feel good about it. But it was easier than constantly having to deal with various companies and cancel contracts.

My mother always used to dress well. That has changed now. She still has a lot of clothes to choose from, but she always wears the same, every day of the week. She then tells me that she has just changed into new clothes.

Washing her hair is a difficult issue too. If I ask her why she hasn’t washed her hair, she says that she doesn’t have to at her age. She’d rather go to the hairdresser instead. I sometimes have to talk to the hairdresser to make sure that she doesn’t give my mother an appointment every day. If she leaves the house to go on a walk, before you know it she ends up at the hairdresser’s if she has enough money on her.

If you don’t listen to her, she can get angry

My mother insults us every now and then too. I have thick skin when it comes to that – it doesn’t bother me. If she’s in one of those moods I change the subject or distract her, for example by turning on the TV. But she can’t follow a film for long anymore. She then says that she already saw the film the day before. If she tries to read a newspaper she only gets as far as the titles. She can no longer read the articles. She then makes comments about what she has read, sometimes repeating herself two or three times in a row. She also forgets that she has told me certain things and starts to tell me them all over again after three minutes. If you don’t listen to her then, she can get angry, accusing you of wanting to kick her out of the house, or even threatening to commit suicide. She then says things like “I don’t want to live anymore.” I know she doesn’t mean it though. She soon forgets these thoughts if she gets distracted.

Once when she was cooking she turned on all of the hot plates and left them on until they were red hot. I turned them off and we had to have a hidden switch installed, which she couldn’t see or use. We then made the bathroom a little safer: we bought non-slip mats and handles for her to hold on to. We covered electrical sockets and put all our medication in a safe place too.

We don’t just argue – we sometimes show physical affection too

She has to take six different kinds of medication at the moment. Sometimes she doesn’t want to take it and says that she would like to read the package insert and talk to a doctor first. She tries to trick us sometimes too, and can be quite sneaky. For example, she might put the medication in her bag, and once I found some tablets under the flower pot on our table.

One thing I’ve noticed recently is that my mother sometimes comes over to me and gives me a hug. We don’t argue all of the time – we sometimes show physical affection too. She never used to want physical contact, but that has changed a bit, which I’m happy about. I know that she likes it and it’s one thing I can do for her. For example, on my son’s birthday, I told her what day it was in the morning. And at one point during breakfast she got up from the table, went over to my son, hugged him and said “happy birthday.” In the past she would have asked him what he wanted for his birthday and given him money. But now she gets up and gives him a hug. She never used to do that.

She likes coming along on business trips

She likes to travel. When I take her on business trips with me, she has fun and I enjoy it too because I can see that she’s happy. I take her to a café, order her a coffee and a piece of cake, and pick her up an hour later. I tell the waitress that my mother is meant to stay in the café and that I will definitely come back. I give her my business card and ask her to keep an eye on my mother while I’m away. My mother enjoys it and it doesn’t cost much. She’s a totally different person then. She’s cheerful, and there are no reproachful comments or bickering. That’s one thing I can still do for her that she enjoys.

I picked up a few ideas about how to cope if she starts running away when I visited a closed ward of a nearby nursing home. The front door looked just like the wall from the inside, covered in floral wallpaper, so that they couldn’t tell it was a door. Even I couldn’t find the exit when I was there. And that’s what I think I’ll do at home when my mother reaches that stage. We’ll be ready to react when this sort of thing becomes necessary. We’ll be prepared.

We want to take care of her right until the end

My mother is integrated into our daily routine at home. We try to eat our meals together, and in the evening we watch TV together. I work freelance and have a home office so it works out well.

We would like to take care of our mother at home, right until the end. We want to look after her as a big community, a big family. We wouldn’t want her to go to a hospital. She would get enough medical care here: we have medical professionals in our family and my family doctor is willing to make house visits. I want her to be able to die at home.

Acknowledgement

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

Labels: Alzheimer's disease, Dementia, F00, F01, F03, G30, Head and nerves, Mental and emotional wellbeing