Hi. I am 21 years old and from the UK. My mother, who is only 56, recently got diagnosed with frontotemporal dementia. It is in early stages and she is still having lots of scans and tests, but to me it appears to be progressing rapidly. My father had an affair and left at the same time all of this was happening. I only have my brother left to help me look after my mum. Our extended family has really not been very supportive.
I want to make sure my mother has the best care possible and want to do everything I can for her. But with my dad leaving and financial issues I don't know how to do it all.
I am in my last year of university and am falling behind with my exams, I cannot concentrate and I constantly feel sad because of everything falling apart around me. Moreover, I have been in a long-distance relationship with my boyfriend who lives in Prague for nearly two years. I am fully aware we are very young, but I cannot help thinking if this continues to get more serious and we want to make a family together, how would this work with my mother being ill? If I wanted to move there (which I am not saying I am doing) would that be selfish? I just have so many thoughts and worries about my future that I don't know what to do.
In terms of my mother's care, I am also not sure how to go about this. I don't want to abandon her or leave her in assisted living but I couldn't possibly care for her myself. My own mental health is terrible and I could not offer her the support she needs. But no matter what I decide, I feel like I am always going to live with guilt or regret. No one could have ever possibly prepared me for losing both my parents in such different ways in such little time. It is hard because I feel like I have no one left to talk to. Does anyone have any advice - to do with caring for my mother or even for myself? Thank you in advance, I truly appreciate any help.
1) There should be a student counselor at your university, and that should be your easiest cheapest way to get some support, advice, links to assistance etc. It might also help if your final exams are a problem – sometimes you can get a supplementary assessment a little later.
2) There are very few people in the world who manage to avoid ‘living with guilt or regret’. Aim for ‘least worst’, don’t expect ‘best’.
3) Be realistic about how far ahead it is reasonable to ‘plan’. Right now, priority is to get through Uni, spend time with BF so that you have a much better idea whether you really are heading into marriage or a long term relationship in a foreign country, and find some adequate care for your mother while you are with your BF for say 6 months. There is no point in worrying now about the rest of your life.
4) Check with your local aging care agency, and with the Alzheimer Association, for advice about care for your mother. Her young-ish age makes some options difficult, and you need professional advice about what may work. Get your information straight about the finances before you ask about options.
5) Your mother will cope in care for say 6 months, even if none of you (you, M or brother) are too impressed with it.
6) You should certainly be working with your brother about this, and also contacting your father. He may have understandable reasons for leaving your mother, but he also has responsibilities to his children. Make sure that he and his girlfriend are fully aware of the fix you are in. If he walks away, you never know – GF may walk away from him, it’s not a good look.
Right now, get yourself to that student counselor!
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In your shoes, I would seek professional advice. Counselling from a Lifeline type service or through Mother's Doctor for both emotional support and where to seek practical support. This may be a family Social Worker service.
I am so sorry about your Mother's condition. If indeed FTD, this often progresses fast & the person requires 24 hour care earlier than other types of dementia.
It may be your life plans get stalled for while. But don't lose sight of your goals, maybe adjust as necessary.