In search of a new balance
Marianna, age: 62
Who do you take care of? For how long?
I take care of my husband’s mother, my mother-in-law. I’ve been taking care of her for the past three-four years.
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?
There has been a big change in our lives. First of all, the fact that the person changed, affected us all. She used to be very pleasant, full of life, she liked to read books and the newspaper and suddenly she changed. There were some signs, but we weren’t familiar with dementia. No one in our immediate family members had it, only her parents. Even before we realized it, six or sever years ago, there were signs.
My every day life changed, as she couldn’t do basic things, like take care of herself, go shopping, cook. We had a bit of a support from a professional who only came three times per week. The rest of the time I was responsible for taking care of her needs, from simple things to more complex. My life changed drastically as I had to take care of another person, almost full time.
I’m not working, but I take care of my family members and I had to try and find a balance in everything, which is not easy to achieve. I had less time for myself and for other things I wanted to do. Due to my husband’s job, we had to travel very often and there were times that we couldn’t be here as often as we would like. I had to stop going with him in some trips in order to stay behind and help her.
What are the main difficulties you encounter?
Sometimes she would get aggressive and not listen to us. She was blaming the woman who was helping us of doing things like stealing from her, which caused some tension. The woman never took anything from her, but we were trying to understand what was happening and had to discuss this with the woman and it was difficult as it created tension. Every time she came, she would accuse her. We couldn’t understand that it was because of dementia.
How do you try to deal with them?
We would try to speak with her, try to understand what was happening and we also discussed it with the woman who was helping us. Fortunately, the woman was understanding and helped us as much as she could, but overall, it was difficult to balance everything. If I could change something would be to pay attention to more details. This might have helped more in the process. I also think that because she was alone at some times, the situation got worst from here. She lives on the apartment above us, but we had to be more cautious and monitor her to ensure she was ok.
Do you feel discriminated against or prejudiced as a carer?
No, I didn’t feel discriminated.
Is there anything you would like people who are not caregivers to know?
Try to educate yourself and pay attention to details. Even small movements that the person with dementia might make, like tidying up their napkins, or the tablecloth, from spacing out, staying still in from of a window for a long time, not responding and then coming back and asking “did you say something?”.
Pay attention to changes in behaviors and educate yourself, as we weren’t familiar with them, but if you notice them, you might realise that the issue was evident from a long time ago, but you didn’t understand it. If you don’t have the time, find someone to be with her. Maybe another relative as a roommate. I believe that being alone worsened the situation.
I still remember a huge change in her behaviour, when a stranger accused me of owning him money. She took him inside the house, she gave him the money that I was supposedly owed him, he stole from her and then she came to me asking for her money back. She knew that I would never owe money to someone. It’s been a long time, and I’m not sure if she ever understood what actually happened. I didn’t realise at first that this was an early sign of dementia.