I am not alone
Priscilla
Picture by Ray Bilcliff on Pexels
Who do you take care of? For how long?
I have been caring for my husband for 10 years. My husband has dementia, probably of mixed origin.
The first signs emerged a few years before the diagnosis, he started doing strange things and exhibiting behaviour that he had never shown before.
Now he has completely lost his memory and does not recognise his loved ones.
Tell me a little bit about yourself: how your days unfold, how care work coincides with your other life activities such as work, family and your passions?
I am now retired. For nine years I took care of my husband 24 hours a day. Those were very difficult years, he was always with me and I couldn’t get away from him or put people to help me in the house because he wanted to be alone with me. Until last year I was chained I could no longer take care of myself and do simple things like putting on make-up or taking care of me because I spent all my time taking care of him.
He lives in a bubble, detached from everything and every now and then there is something that calls him back to the outside world. I had reached a breaking point, I don’t know how I would have ended up if I had gone on like this.
Last year, with the help of the geriatrician and the social worker, I placed my husband in the day care centre. Since then, both my life and his have changed for the better. He attends the centre from Monday to Saturday from 9 am to 5 pm. So now he is much more manageable at home.
At the beginning I just breathed, then I started to take care of myself again and resumed my passions such as reading and gardening. Before accompanying him to the day centre we do a few laps, then when he returns we play cards, sing together and watch television.
I recently attended a course to become a tutor at the “Gymnasium of Memory” and now I am in the group, I would like to give back the support I have received, help others, pass on what I have learnt over the years and bring added value to my experience as a carer.
What are the main difficulties you encounter?
The difficulties I encountered were of all kinds. At first I didn’t realise what was going on, he had strange behaviour that I couldn’t understand, he was jealous, tended to isolate himself, forgot things and was more irritable. Until the diagnosis came, the geriatrician explained to me what it was all about.
When I began to understand I went through a period of anger, I couldn’t understand it, I wondered why it had happened to him who had always been so active, sociable and open towards others. I turned to the psychologist at the hospital who helped me to develop different keys and to be more aware, she also taught me some strategies to manage behavioural disorders.
How do you try to deal with them?
I sought help, I involved the children not so much for practical help but for psychological support. I gathered information to try to understand better and took part in the self-help group. At the group I got to know other ladies in the same situation as me, we exchanged tips on how to handle critical moments.
The group psychologist also provided me with additional tools and strategies to deal with BPSD. I realised that I wasn’t going anywhere on my own, so I had to seek help from professionals, and I found a lot of help from the geriatrician, the psychologists, the social worker and the other members of the ama group. Shame was of no use and I realised that I am not alone.
Do you feel discriminated against or prejudiced as a carer?
No, I was not a victim of prejudice when people realise he has a disease they understand. Of course, our circle of friends has narrowed over the last few years, they saw that my husband was in trouble, that he was isolating himself and that he could no longer do the things he used to do, and they moved away.
However, I understood their point of view. Pretty much all the carers I met at the self-help group said that after the diagnosis their circle of friends had shrunk. After all, we are all a bit selfish.
However, I see that the more one talks about it, the better it is for oneself and for understanding that it is a shared reality.
If so, how do they make you feel?
I felt a bit lonely.
Is there anything you would like people who are not caregivers to know?
I wish they knew that it is very difficult and you never finish, you lose patience and you have to repeat the same things many times. You get very tired.