Which incident changed your life drastically? Why?

Is that still my father? How FTD changes a family life by Astrid H.

About two years ago, the activities that my father could do independently had already been drastically reduced. One day he proudly explained to me how he operated the coffee machine. He seemed fascinated that you just put in water and coffee powder, press a button, and coffee is made. Why did I have to suppress tears? Because this man, whom I have known so long and so well, just wasn't the same anymore. He looks like my father, he sounds like my father, but he can't be, can he? Is that the trained plumber who turned his electrical engineering hobby into a profession? Who first learned to swim at the age of 35 and then took a windsurfing course? Who could just do anything? Sports, home improvement, amateur radio, cooking? Who was fun for everyone and loved irony? This man, who looks like my father, can no longer even make himself a sandwich, cannot distinguish between factual statements and jokes and sometimes I'm not even sure if he really recognizes me ...

The diagnosis helps

My father was diagnosed with FTD in 2012. Finally having a diagnosis (and with it a few answers) has helped my mother and me a lot. For my father himself it doesn't make any difference because he is not aware that he is sick or cannot express himself. We hope, however, that our knowledge and understanding will help him.

Constantly new ticks

The illness changed my father a lot. Not just at the beginning, but it keeps changing and constantly developing new habits / ticks. This is very difficult for my mother, because almost every time she has adjusted to a new "quirk", the next one appears again. As I said, for a long time making coffee was one of the few activities that my father was still able to do independently. However, he felt the urge to refill the coffee can with more coffee powder as soon as only a third was used up. He then simply poured the rest into the sink and blocked the drain a few times. He has always enjoyed drinking coffee, but enjoyment has now become an obligation. He keeps pouring himself a cup, but then often forgets to drink it too. He even forgets that he already has several cups of coffee in front of him and gets more. When he can't find any more mugs, he sometimes reaches for beer mugs. My mother makes tours around the house several times a day and collects empty and full cups.

Before the “coffee tic” he had a “water tic”. My parents always had a bottle of mineral water next to the bed in case they got thirsty at night. All of a sudden, however, my father began to line up more and more bottles (15!) Next to the beds. He had also developed an aversion to incomplete bottles. As soon as a mineral water bottle (bubbly) was opened somewhere in the house, he refilled various bottles until they were all full.

Almost a comedy

I'm afraid I hurt my mother's feelings a few times by simply laughing when she told me about the latest incidents on the phone. If she is doing well and has the situation under control, then she too finds that her life is sometimes like a comedy. However, since she has been trying to make the best of a difficult situation for about five years, she sadly goes away from laughing every now and then.

My mother regularly visits two self-help groups, which is a great help to her. When we compare our situation with that of others, we are often very relieved because other people affected report much more drastic situations. We appreciate every bit of communication that is still possible with my father and are grateful that he is not violent or poses a danger to himself or others. For me (I live abroad) that means that I can sleep a little more peacefully. My mother too often consoles herself with the thought that it could be much worse. The fact is, however, that your own situation doesn't really get any easier just because someone else is worse off.

Strong nerves, humor and friends

To care for someone with dementia, you definitely need strong nerves, a healthy dose of humor and the support of friends, relatives and specialist staff. I am convinced that in the long term these three things are necessary in order not to despair. It took us a while to find the right contact person, but now we are lucky to have such a good support network. On the professional side, we can rely on family doctors, specialists, social workers and nursing staff, and in the private sphere, friends and good neighbors have proven to be a blessing. This gives my mother practical help and moral support and gives me peace of mind.

I can only recommend everyone not to give up, there are many wonderful people in the care sector and among friends. Nobody should be afraid to tell others about their own situation. You will be amazed how many people themselves are in a comparable situation and how many people show understanding and offer help!

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Frontotemporal Dementia - FTD

Information sheet 11 - Frontotemporal dementia