You lose them a bit more every day. And there’s nothing you can do about it.
Marion, 55 years old
"My mother isn’t the same person I used to know. She hasn’t recognized me for a long time now. You lose them a bit more every day. And there’s nothing you can do about it."
We didn’t notice anything at first. People who have dementia are able to hide their illness for a long time. We just figured she had developed a few quirks. The thought that she might be ill never crossed our minds. We hadn’t ever really known anyone with Alzheimer’s disease. I had heard of it before, but all I knew was that it had something to do with forgetfulness.
My mother had always been very house-proud and placed a lot of importance on being well dressed and made-up. But that changed. For example, when we went home at Christmas we would find Easter decorations that had not been put away yet. It was just small things at first. She stopped going to the hairdressers and meeting up with friends. But I never for one moment thought that these were signs of dementia.
Then we started finding notes around the apartment. Some of the notes had my brother’s name or my name written on them. Our names were sometimes spelled wrong.
I put that down to old age. But her strange behavior got worse. For instance, I found it odd that she was suddenly afraid of going on vacation. My mother had always gone on big trips to places all over the world, and now she was scared of going to Spain.
My mother lost interest in a lot of things
I sometimes compare these changes to toothache. They come, they go away, and then they start coming more often until, at some point, you’re in so much pain that you have to do something about it. That’s what it was like with my mother too. She lost interest in a lot of things. She stopped meeting up with her friends and doing activities she used to do. A lot of small things added up and we felt we had to do something.
I asked a friend of mine who works in medicine to visit us at home. She soon recognized what the problem was and told me what she suspected. My response was: “That’s crazy – just because someone is acting a bit strangely, it doesn’t mean they have Alzheimer’s disease. Alzheimer’s is where you forget stuff.” I guess I didn’t know anything about the disease at the time.
We thought she was just getting a bit forgetful
I then persuaded my mother to go to the doctor with me, saying that I had to see a neurologist. I didn’t dare tell her that she should be checked out. The experienced doctor did the usual tests and soon realized what was up. Her memory problems were very noticeable during conversation. She was unable to answer certain questions. For instance, he asked her who the current German Chancellor was and she replied: “Why? Don’t you know?” That was quite typical. She often responded to questions with another question. She then had stationary treatment for a week and the diagnosis was made. But we still didn’t quite understand the implications. We still thought it simply meant she would be a bit forgetful.
In the early stages of the disease she told me she thought she was going crazy. She had had a feeling that something was not quite right with her for a while.
When I started finding out more about the disease, I first heard the expression “loss of daily living skills”. But I couldn’t really picture what that meant either, until I realised that my mother wasn’t coping well with household chores. Although she was getting medical treatment, she still lived on her own, 15 kilometers away from us. I went to see her nearly every day after work. At some stage her health insurance informed us that her level of nursing care needs should be assessed. The doctor who examined her gave me more information about the disease, so I had a better idea of what to expect. But what actually happened was far worse. I had thought that an assisted living community would be a good option for my mother, but the doctor burst my bubble, saying that it was too late for that. So we decided that she should be with us. We rented a separate flat for her in the same block that we live in. We discussed it with her too, but failed to realize that she didn’t really understand what was going on anymore at that stage. So she was furious when it came to the move. She literally lashed out at me.
Before I knew it, I had taken on the role of the caregiving relative
I thought I would take care of my mother at home, as you always imagine to be possible. In other words: help her with household chores, cook and go shopping for her. I didn’t understand that she was no longer able to run a household at all by that point. That came as a shock. And before I knew it, I had taken on the role of the caregiving relative.
I was still going to work at the time, but was lucky enough to have flexible working hours. Still, I started having serious problems concentrating. I spent half the time thinking about my mother and whether everything was OK at home. I felt desperate with worry and was afraid that I wouldn’t be able to cope. If I had known back then how the disease develops and how it can affect relatives too, it may have eased some situations and things may not have escalated the way they did.
And so it took its course. Nearly all of my mother’s friends and acquaintances cut off contact at first. Someone would call every now and again, but that stopped completely after a while too. They all disappeared into thin air when the disease started. I often put myself under a lot of pressure, doing all I could to help my mother carry on actively participating in life. But my work started suffering. I couldn’t help any more.
I also had to learn how to deal with aggression
There were so many little things that added up, starting with her personal hygiene. I hadn’t had any training in nursing skills and didn’t have a clue how best to do things, especially when she protested. We also had to overcome a few inhibitions. My mother’s generation wasn’t used to getting undressed in front of their children. And I wasn’t used to bathing my mother either. I had to learn all these things, including how to cope with her aggression. Many things would have been a lot easier if I had understood the disease better. Had I known that her aggressive behavior was her way of communicating and dealing with the disease, I wouldn’t have taken it so personally. I always thought she was laughing at me, which sometimes made me feel aggressive too.
My mother was treated with medication. At one point her condition really improved for a while when her dose was increased, but the improvement didn’t last. She carried on deteriorating, although more slowly. Then the situation escalated. I used to help my mother get up, washed and dressed in the morning. One day I was standing in front of her and wanted to undo the buttons of her nightdress, when she put her hands around my neck without any warning. I fell to the ground and she lay on top of me and throttled me. That was the worst experience I have ever had. Looking back with the knowledge and experiences that I gathered over the years, I now understand that it wasn’t a personal attack. I can talk about it now. At the time it drove me to a nervous breakdown. So we made a family decision to look for a nursing home place. I always used to think we’d only consider putting my mother in a home when she really needed nursing care. I didn’t realize that she had long been in need of nursing care, because I used to think that meant being bedridden.
I felt like a failure
She then moved into a very good home, but I still felt really guilty about it. I felt like I was a bad person, like I had failed. But my mother soon made friends there, particularly with another woman who had dementia. They had a very deep connection.
My mother is not the same person she used to be. She hasn’t recognized me for some time now. It killed me the day she asked me whether I was her daughter. It was a nightmare. I can’t describe in words how I felt. It was like I had been pushed out of her life. You lose them a bit more every day. And there’s nothing you can do about it. You just have to accept and bear it.
Although my mother now lives in a home, there are still decisions to be made. For instance, what to do if she starts having swallowing difficulties. Would I agree for her to be artificially fed? I’m not in favor of it myself, but if I have to decide for my mother? Or when she has to have tests done. I constantly have to make decisions for my mother and can’t ask her what she wants.
Just about everything has changed for us
I draw strength from my family. A lot of things have changed. The way I perceive things has changed. I’m now a lot more relaxed about many things that I used to get upset about. I have done tai chi for many years, but that stopped working while I was looking after my mother at home. I started having sleep problems and stomach pains. I just couldn’t relax anymore. I always thought I’d be able to deal with it on my own, but I couldn’t. It got too much for me. For a long time I thought I had everything under control. But I was deceiving myself.
There’s a school of thought that says people who have dementia aren’t aware of anything. I totally disagree. Although my mother doesn’t recognize me anymore, when I give her a back rub and hum a tune that she may still recognize she feels and hears it.
I often got angry with my mother while I was taking care of her. Sometimes I would try to argue with her, but it was pointless. I would then instinctively back down so as not to let things escalate. Nowadays I know that was the right thing to do. I would just leave the room and she would soon forget about whatever we were arguing about. I, on the other hand, would carry on thinking about it for a while. It’s not that easy to forget about it when your own mother insults you. But if you understand how dementia affects people then you know not to take it personally. It’s just her way of defending herself against the illness.
Today I can still laugh about some of the situations we got into
We had some more fun times too. If she was in a good mood we were already half way there. We often had a good laugh about comic situations that arose. I still laugh about some of them today. I wanted my mother to take part in everyday life as much as possible so we did a lot of things together. One day when we were standing at the checkout counter of a supermarket, my mother gave the man in front of us a slap on the bottom. He turned around and looked at me. I wanted the ground to open up and swallow me! I didn’t dare say that my mother was ill. I never did that. My mother just stood next to me, beaming, as if to say: “It was her!” We would also enjoy special moments together when we looked at photos or watched old films, which always made her blossom. She remembered all the names of the old film stars, which was pretty impressive. She had lost a lot of abilities, but she could remember their names.
I believe it’s incredibly important to try to understand the illness. And relatives have to take care of themselves. If their relatives are happy, people with dementia are happy too. It’s also important to accept help early on and come to terms with the diagnosis, even if it is frightening.
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.