Mama's Alzheimer's and Us" - From Speechlessness to Blog and Book

Mama's Alzheimer's and Us" - From Speechlessness to Blog and Book

When my mother was diagnosed with Alzheimer's, I could hardly find words to talk about it. Nowadays, I talk a lot about dementia and my experiences. I have written a book about it and advise all relatives: Start talking. It's difficult, but it's worth it.

It's been a little over ten years. My mom was 55 years old at the time and received the diagnosis of Alzheimer's – it was a shock for her and the whole family. Of course, we had noticed changes beforehand: She was more forgetful, often seemed distracted, and increasingly had orientation problems. However, we were not aware that these could be symptoms of dementia. In the weeks following the diagnosis, I cried a lot. I was worried and scared that my mom might soon not be around anymore. I also thought about my future: Would I soon have to take care of my mom? How would I manage that alongside my job and child? Would I have to give up my job?

I couldn't discuss all these thoughts and worries with anyone. I felt alone. 1.6 million people in Germany live with a diagnosis of dementia, along with their relatives. So many people have this experience. Dementia should be a widespread topic in our aging society, or so one would think. But to this day, those affected and their relatives often experience loneliness, helplessness, and shame. "I thought I was the only one feeling this way" or "I felt so alone," I often hear from relatives after I have shared my story with them.

Why Talking About Dementia Is Difficult

For me, it was a rocky road to be able to talk about dementia. I thought for a long time that I had to be the strong daughter. When my mom received the diagnosis, a small part of her was relieved because it was clear where her changes and difficulties were coming from. But the larger part of her was sad and sometimes helpless. I definitely didn’t want her to become even sadder, so I avoided talking about my own sadness and fears. When I was with her, I could be strong. I accompanied her and my dad to the doctor and counseling sessions and showed confidence.

I often suppressed my own feelings and thoughts. In the daily stress of work, household, and child, I managed this quite well. My parents live about 400 kilometers away from me. When I wasn't with them, my mom's dementia took up little space in my daily life. My parents soon found a new rhythm. My mom had given up her job as a teacher after the diagnosis, but she remained active. My parents took long walks and trips.

The diagnosis of dementia also changes the family members.

But of course, mom's Alzheimer's disease progressed. "Dementias are mostly irreversible and last until death. They shorten the remaining life expectancy typical for age," states an information sheet from the German Alzheimer's Association. In a very matter-of-fact way, it describes what families dealing with dementia experience with many emotions. New challenges keep arising, for which solutions must be found. There are always disappointments and farewells. Anger and frustration are felt repeatedly. However, there are also moments of happiness and beautiful experiences.

Every family has its own experiences with dementia – and yet exchanging experiences is worthwhile. It took me quite some time to realize how much my mother's illness occupied my mind and how sad it made me. While I could talk well about the practical things, I could hardly speak about my emotions, even though they sometimes felt like an internal roller coaster ride.

Talking helps in processing and maintaining

I initially recorded my thoughts only in my diary. But the desire for more publicity grew. Because only when we tell and talk about it can others understand what it's like to live with dementia. And only then can an exchange begin. So I started to write publicly about my experiences with my blog "Alzheimer and Us". I wanted to share my perspective as a relative and exchange ideas with others. I quickly realized: the more I speak and open up, the more it helps me and others.

Speaking first and foremost helps to reflect on one's experiences. That sounds easy, but it isn't. Because this reveals one's own mistakes. I have also realized many times in hindsight that I didn't act correctly in certain moments. When my mom asked the same question for the tenth time or set too few utensils on the table, even though I had told her the exact number, I sometimes reacted annoyed. I had read several guides on the subject of dementia and actually knew that this was the wrong reaction, yet I couldn't take it to heart in the situation.

A dementia demands a lot from family members. You learn a lot about yourself and a new way of dealing with mistakes. Mistakes used to be something terrible for me. Today, they are an opportunity for me to learn. Talking about your own mistakes is not an admission of weakness; rather, it shows strength. Because this way, I can learn and often others can too.

Sharing one's own story to inspire others

In the public sphere, there is a very negative image of dementia. Those who receive the diagnosis often feel stigmatized. Many affected individuals and their family members are ashamed to talk about it. This is unfortunate because it prevents them from finding support or engaging with others. That’s why I wrote my book "Mom’s Alzheimer’s and Us." It contains a lot of personal experiences. I write about my mom’s Alzheimer’s disease and how I cope with it, and I want to encourage other family members.

I want to show that dementia is a process and that not everything ends immediately with the diagnosis. It is important for me to convey to other family members that it's okay not to know things, that it's okay to be sad or annoyed, and that it's also normal to sometimes feel overwhelmed. But I also want to pass on: It helps to talk and accept support.

In my book, I also write about my positive experiences. I write about how I feel gratitude and humility for my life through my mom's Alzheimer's disease. We can laugh heartily and experience intimate moments. Unfortunately, these positive aspects of living with dementia are far too rarely discussed and shown. That's also what "Mamas Alzheimer und wir" is about for me. Yes, Alzheimer's is a terrible disease and there's little to sugarcoat, but despite everything, one can continue to experience beautiful moments. I hope that we support and encourage each other and walk this path with the disease together.

Text: Peggy Elfmann (last updated on: 02/11/22)

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