Mini-Strokes and Young-Onset Dementia

[egiappctaylor]

My mum has been a type-1 diabetic from the age of 10. She is now just turned 53 and as a result of her diabetes has suffered from four mini-strokes and a left-leg amputation. Her memory after each stroke has got progressively worse and significantly worse after the last one she has had. I have been her carer since the age of 14 and have since left to get a university degree and to make her proud.

I am finding it really hard to come to terms with. I am only 21 and it feels like I am the only person my age who is going through something like this. I am currently in the process of seeking a formal diagnosis for dementia. I do feel as though I am grieving and have been for the past three years. It is a huge loss and so very painful when my mum does not recognise me sometimes. She has good days and bad days. As being her carer, I was always proud of having her health under control with her blood sugars. Now, I feel that dementia has taken all that control away.

I do find myself questioning whether it be best to carry on with my education and pursuit to be a lawyer, or to put everything on hold and go home. Part of me wants to be with her more often - another part does not want to watch dementia slowly chip away at her.

I hope you can help me find some solace.

- E

 

[karaokePete]

Hello @egiappctaylor and welcome to the forum. You are in the right place for understanding and support.

My view is that you should stick with your plans.

The Local Authority have a duty of care and they should be able to help you and your mum.

I'll post a link that will take you to useful Society Factsheets in a minute.

 

[karaokePete]

The AS Publications list can be found by clicking the following link

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[imthedaughter]

@karaokePete is right, don't drop out of university. By all means try to advocate for your mum but you know she wouldn't want you to put it all on hold.
If you haven't already make sure you have LPA in place and get her needs assessed by social services. They cannot expect a university student away from home to look after mum full time.
My dad is not early onset he's just a lot older than most dads so I'm dealing with this a bit earlier in life than most (but I've still got over a decade on you) so I know it's a massive learning process and can be really stressful. Have you got other support and can you speak with your university about counseling? You've been a carer since your childhood - you need to look after yourself as well. Just some thoughts to get started on. Let us know how you do. Lots of experience on this forum. Take care ?

 

[egiappctaylor]

Thank you for your kind replies.
@karaokePete: Thank you. I understand where you are coming from. However, I feel an immense attachment to my mum and I am very sceptical about my local authority's ability to look after her to a good enough standard. Luckily, my mum registered me as her financial Power of Attorney so I now deal with those affairs - it's really tough at times. I am helping to pay off her mortgage. I am not registered as her health and welfare PoA... I feel that this may be a problem.
I know this will get easier with time. I have sought CBT to deal with the grief I am feeling. It's just the most unusual feeling.

@imthedaughter: Thank you. I am trying my best and will persevere as its only a couple months until I graduate. As you can see by my reply above, I have sought counselling/CBT which has been helpful. I just get frustrated sometimes because I wish that things weren't like this. However, after finding this forum, it is good to be able to read about people's experiences who are in the same boat as I am. Best wishes☺

 

[imthedaughter]

I am very glad to hear you have sought some help for you. Bear in mind that when you get to that point, in most areas care is not split into Local Authority / private - it's the same, but some people pay for it themselves because they can afford to. Dad has been paying privately and now is paid for by the LA. It's the same home and care.

When we're talking about care at home of course you would probably be at home more, and probably all the time as you will find it takes over completely, whereas carers would pop in and out for essentials like medication and meals.

I do think it would be good to get professional help with care even if you do decide to continue caring. I don't know what stage mum is at but it may not be too late to get the health LPA if she still maintains even fluctuating capacity.

I wasn't able to care for dad myself as I lived so far away and he was best going into residential when he did but it depends on your circumstances too. I do wish you and mum the very best.