Then after a while he began stopping cars on the street and asking for lifts.

Photo of a man wearing a straw hat (PantherMedia / scigelova) Eva, 63 years old

“Then after a while he began stopping cars on the street and asking for lifts. At first he had very creative ways of doing it, but then it became dangerous. He almost threw himself in front of cars and started directing traffic too. He also sometimes just got into cars when they stopped at red lights.”

My husband was 56 when he was diagnosed with dementia due to Alzheimer’s disease. That was in 2002. We had already noticed that something wasn’t quite right. It happened gradually. My husband is an engineer and we had our own business. He started having difficulties concentrating, mixed up or forgot appointments and constantly had to check on things. He became withdrawn and unmotivated. We blamed it on stress at the time. Our financial situation got worse and when he cancelled contracts that we absolutely needed I insisted that he go in to get checked out. At that point my husband consented.

At that point he hadn’t yet noticed that there was something wrong with him. Although he wouldn’t accept that he was ill, he willingly took his medication on his own in the hope that things would be OK again in about two years. He had MRI scans [note from editor: magnetic resonance imaging] and various tests done.

He absolutely refused to accept that he was no longer able to drive

Shutting down our business, ending his career, selling our house and moving didn’t really bother my husband much. But he absolutely refused to accept that he should no longer drive his car. None of our pleas had any effect, so my son felt he had no choice but to take away his father’s driving license. The driving itself wasn’t a problem yet, but his ability to react quickly in stressful traffic situations became unpredictable.

I spoke openly about my husband’s illness because his friends and business partners had also noticed a change in his behavior. My children couldn’t understand why I was so open about it at first, but it made my life a lot, lot easier. Everyone understood that he was ill, and not crazy, when he started acting a bit strange. I moved out of our bedroom based on the excuse that I had a cold. My nose was blocked and my cough disturbed him. Moving out was a big relief for me because he had started to neglect his personal hygiene. He always wore the same clothes and would get all defensive if I tried to make him change them. He would say things like ‘Stop nagging, you’re worse than my wife!’, so I started secretly replacing his old underwear, socks and trousers with clean clothes whenever he was in the shower or asleep.

We moved for financial reasons

We had to move for financial reasons, but we stayed in the same area. We sorted out my husband’s room first, with a TV – which was important for him – a desk, a computer and a printer. He felt quite happy in his room. I informed the other people who lived in our building about his illness, told everyone, but I forgot to tell the neighbors opposite us. After a few days a man rang the doorbell and complained that my husband had thrown trash from the balcony. My husband denied the accusations, of course. I went outside with him to pick up the trash and stuck notes on the windows, reminding him what he should and shouldn’t do. Generally speaking, our neighbors were very understanding.

My daughter and I then started our own business and opened a small shop. It was a form of therapy for me. I got out of the house and my husband didn’t mind. At that point I could still leave him at home on his own without any problems. His sense of orientation was still intact and he could walk long distances. He used to come and visit me in the shop about four times a day. He would take the train without buying a ticket, so the fines were sent to me. After a while I started passing them on to our lawyer. We didn’t have to pay them anymore then.

My husband had become a stranger to me

But by then he had become a stranger to me in a way. He had always been a man of few words, but he started talking at me like a machine gun. He used to have difficulties showing his feelings, and now constantly told me how much he loved me. He used to avoid going to the doctor, and now suddenly had a whole load of little ailments and regularly went to an orthopedist. He would buy large amounts of tablets, and would unfortunately take them all at once, which was obviously not good for him or our purses. With the help of a pharmacist friend of ours, we put together a pill bottle for him. It was a real pharmacy bottle with white pills in it, but they were in fact only sugar tablets. Seven different pharmacies were involved. The other pharmacies would see the bottle with our pharmacist’s number on it and contact him.

My husband’s weakness for sweet foods got worse. He pretty much only lived on yoghurts, ice cream and a bit of fruit. He would go shopping himself, get an ice cream and yoghurt but refuse to pay for them. We had to pick him up from the police station a couple of times. So I went around to the shops in our area that he would go to and spoke to the managers. They were generally very understanding. I put notes on the door and in his wallet, saying “don’t forget to pay” on them.

Our little network worked well. My husband always wore a light-colored straw hat, which made it easy to recognize him. I only had to ask people whether they had seen the man with the straw hat. Our friends and other people we knew would let me know if they saw him and something was up.

The doctors were surprised that it was still working out at home

Then after a while he began stopping cars on the street and asking for lifts. At first he had very creative ways of doing it, but then it became dangerous. He almost threw himself in front of cars and started directing traffic too. He also sometimes just got into cars when they stopped at red lights. It reached the point where the police had to remove him from the street because he was a danger to himself and others. He was taken to a psychiatric institution. The doctors were very understanding, and surprised that he had still been able to live at home at that stage of the illness. They didn’t think things could go on as they had and recommended that my husband live in a nursing home.

But I wanted to give it another try at home. I stopped working, and my daughter worked alone in the shop. We had to lock all the doors at home because he would run away if I didn’t keep an eye on him, like when I was in the shower. It eventually became impossible for him to live at home. Sometimes he would suddenly start washing himself a lot, having shower after shower between about 2 p.m. and 2 a.m. If I told him that he had already had a shower, he thought I was making it up. He had forgotten.

Then I started looking around for nursing homes

I started looking around for nursing homes and eventually found a place, but was terribly scared of putting him in it. The day I took him there was the worst day of my life. I felt like I was getting rid of him. I knew it wasn’t like that, but it felt like I had given up. I had already packed his stuff and put his bag in the car the evening before. My daughter and I had gone to the nursing home a few days earlier to make his room cozier, taking along pieces of furniture from home and decorating it with pictures.  My husband didn’t like his new surroundings and didn’t want to stay there. He called out for me and I had to hide. It was dreadful. I had to sneak away when I wanted to leave. About an hour later, when I arrived back in our shop, the home had already called to say that he had run away and they could not admit him under these circumstances. He was aggressive then too, a danger to the other people in the home, and was taken to a hospital. Later on we tried to take him to the home again. But he would run away six times a day and the nursing home gave up.

The social worker at the hospital helped us to find a new nursing home. But we had problems with the new home too. He started running away again and was taken back to the hospital. Around that time I had read about something called frontotemporal dementia and wondered whether my husband might have it. I asked the doctor about it, but he didn’t want to consider the possibility that the Alzheimer’s diagnosis may have been wrong. My husband was then transferred to a hospital with a special ward for people with dementia, where he stayed for five weeks. While he was there they checked the diagnosis and found that he actually did have frontotemporal dementia. After that he received totally different treatment.

Once again we started looking for a new nursing home. The one we chose has an innovative approach to caring for people with dementia. Each patient has their own room, but they spend most of their time in a large common room. They also have enough staff who take very good care of him, although he can be difficult. Since receiving the new diagnosis he has been on different medication and is a lot friendlier as a result. He is always in an incredibly good mood and pleased when you visit him. I think he is happy.

He wants us to laugh with him

He still recognizes me, but it’s getting more difficult. He already has problems with the children too. He tries to cover it up by saying “darling” or “love” whenever he forgets their names. My son was very upset recently when my husband asked him who his father was. When my son replied that he was his father, my husband denied it and said he was just a friend. The first thing he says when he sees us is “you look great” or “you’re all beautiful.” He is pleased to see us, claps his hands and laughs. He wants us to laugh with him then. That’s very important to him.

The self-help group I joined helped me a lot. I met people there who were going through the same as I was. I can’t complain about not having enough supportive people around me. I have my children and good friends, and that’s great. But in the self-help group there are people who have exactly the same problems as I do.

We can no longer sit together and say “Remember when…?”

My children give me the strength to cope with the situation. They are always there for me if I need them. And I have a great group of friends. Humor is very important to me. And I also find it important to look after myself. After all, I am here too. I may be 61 and am no longer a teenager, but I have a life as well. I like to read, go to the movies and am interested in art. I have a friend who I do a lot of things with. We go to the theater or a concert. That’s really important to me. Of course there are times when I feel down and cry but that doesn’t mean I have to stay at home all the time.

What makes me sad is that my husband doesn’t have any memories of our past. We can no longer sit together and say, “Remember when…?” I have to remind him what he used to be like. He’s still here, but he isn’t the person I knew and loved. That’s one thing that’s very difficult to deal with. I think moving him into a home was the right decision. We had no other choice. I wouldn’t have been able to cope with him 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