I just kept thinking: Why me? Why my family?

photo of woman painting a picture (PantherMedia / Matthew Antonio) Nicole, 57 years old

“After finding out I had Alzheimer’s I was so angry, I wanted to lash out. I just kept thinking: Why me? Why my family?”

About four years ago I was still doing an apprenticeship. I never used to be afraid of exams and I never had to study much for them. But on the day of the exam my mind went blank. Then I knew that something wasn’t quite right. I also noticed that I had problems coordinating my hands at work. I never had coordination problems before. So I went to see a doctor about it. They took a sample of fluid from my spine and concluded that I had Alzheimer’s disease. That was two years ago.

I lost my last job because of these changes. That was really tough for me. But I already had the feeling that I had Alzheimer’s a long time before then.

After finding out I had Alzheimer’s I was so angry, I wanted to lash out. I just kept thinking: Why me? Why my family? Those feelings have died down now. Things have been better since having more contact with my friends again. I exercise a lot, eat healthily and do voluntary work with old people. I don’t get bored. That helps.

At first I was very scatterbrained and restless

At first, when I wasn’t taking any medication, it was really bad. I was very scatterbrained and restless. I forgot a lot of appointments. I’m generally much calmer now that I’m on medication. If I were to stop taking the tablets and stop exercising, I’m pretty sure it would be difficult for people to be around me because I can get aggressive sometimes.

I can tell when the effect of the medication starts to wear off. Then I find it harder to concentrate. And I’ve noticed that the effect of my medication wears off more quickly if I do something where I have to really concentrate. I suppose it’s a bit like when gas is used up more quickly if you drive faster. My dose of medication has gradually been increased. It can be increased a few more times, but not many more after that. That would be the highest possible dose.

My children are still coming to terms with my diagnosis

I’m really worried that my children could get Alzheimer’s. They’re still coming to terms with the diagnosis and are very scared of what’s to come. It’s really tough for them.

After the diagnosis, my friends stopped calling at first – at a time when I really needed them. But I can understand their reaction. My mother, sister and brother also have Alzheimer’s. I remember not wanting to believe it was true when I heard that they had the disease.

I found a lot of strength in self-help groups

My life has changed quite a bit since receiving the diagnosis. I found a lot of strength in self-help groups. That was incredibly important for me. I prioritize things now. I try to approach things calmly. That isn’t always easy to do though, and I sometimes end up doing things in a hurry, like I used to. I have to learn to slow down then. Being calmer is better for me.

After I stopped working, I didn’t want to just stay at home all day. I decided to regularly visit people in nursing homes, because I know that a lot of them are lonely. I feel like I’m doing something positive that way. But I don’t go if I’m not feeling well. Exercise is really important to me too. It gives me the balance I need.

I’m very fortunate to have a friend who gives me a lot of support. He takes care of all my paperwork. I could do it myself, but he’d have to sit next to me and watch. I can still express myself very well, but I have problems with spelling. I know he would do anything for me, and that’s a good feeling.

I only drive if I’m feeling fit enough to

I sometimes see things that aren’t actually there. That’s embarrassing. Hallucinations can be a normal part of Alzheimer’s. For example, I once braked because I thought that someone was lying in the middle of the road. But the road was empty. That probably had something to do with the light and shadow, but I’m a lot more careful when I drive now. I only drive if I’m feeling fit enough to. If I’m having a bad day, I leave the car at home. I think that can happen to healthy people too, but I had never experienced it before. So I asked my doctor to sit in the passenger seat while I was driving, to see whether I was still fit to drive. He said that I was. He also tested my reaction time and said it was fine. We now do this test regularly and often.

I find it a lot easier to understand how certain other people feel now. For example, I know why some people get aggressive if they’re unable do the things they would like to do. If I forget where I’ve put something, it can sometimes get to me. I get mad at myself and have a fit of anger. I’ve left my purse in the shop before too. If I notice that I’m getting aggressive, I get on my bike or clean up or decorate my apartment. I try to distract myself. It works well.

I also think it’s really important not to become socially excluded

I also think it’s really important not to become socially excluded. I excluded myself for a while. I became withdrawn when I realized that others had difficulties dealing with my illness. I had to come to terms with it myself first. I find it hard to listen to my friends talking about their problems and worries. Everyone has a cross to bear.

But my friends are there for me now. They just needed some time to come to terms with my illness. It’s not that easy. When they got in touch again I was happy to have them back in my life.

I don’t have any physical pain - it’s psychological pain

I don’t have any physical pain. It’s psychological pain. So it’s bearable and I keep telling myself that there are worse things.

I think it’s really important to make arrangements regarding inheritance issues and a living will soon after receiving the diagnosis, when you’re still capable of doing so. I wanted to prepare a living will to make it clear what medical care I would and wouldn’t like to have. At the moment I’m wondering whether or not to donate my brain to research. That might help researchers develop new treatments for people with Alzheimer’s.

 

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