A journey of love and challenges alongside my uncle with dementia: the testimony of a young carer
Electra, age: 29
Who do you take care of? For how long?
I care for my uncle who is suffering from dementia and has some psychological struggles. The main helper is my mother, his sister, but I try to support both of them. Assist my mother to help her have a more balanced life and care for my uncle by spending time with him and helping in daily routines.
I’ve been helping with his care for the past three and a half 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?
In the past I’ve been a volunteer, helping in a care facility, so I tend to follow that schedule.
In the morning, I help give him his medication and then assist in his daily exercises, that help him improve his mobility.
After I return from my job, he has already taken his evening medication and rested. Then, we try to spend some quality time with him and play some games to help with his memory.
Overall, it has affected my personal life, as my evenings are usually occupied with his care. My mother is struggling, but she gets all the help she can. She is retired, so it’s a bit easier.
But I definitely understand the burden and the toll that it has on our lives and our family.
What are the main difficulties you encounter?
One of the most difficult things is when I realized that no matter how many times, I say something, probably he won’t remember it the next day. This repetition causes frustration and sometimes makes me feel more tense or irritation, which you will have to deal with, while still caring for the person.
How do you try to deal with them?
I try to realise that this is something I will need to keep on doing, for the repetition. In a way I come to terms with it. Regarding the frustration, I try to remind myself that I shouldn’t keep my hopes high and remember that it’s not his fault and that’s how it is.
Do you feel discriminated against or prejudiced as a carer?
There is this belief and people always say “how do you do it?” or they are worried that we might be in danger and that maybe my uncle will become aggressive. I feel that maybe it’s not as strong as it used to be, but I feel like it’s still stigmatized.
If so, how do they make you feel?
I try to turn things around and always answer with a positive attitude. I usually explain that it’s not like what we usually think when we discuss about dementia, in order to minimize the negative feeling, trying to eradicate the stigma and inform as much as possible.
Is there anything you would like people who are not caregivers to know?
As I mentioned, to inform them and make them realise that it’s not like they think. I believe our society has built this image in our heads, making it bigger than it is. We should always remember that people with dementia are like us, they just need more care and attention. Their reactions/behaviour are just like ours, maybe a bit more intense, but still a human reaction.