Partner diagnosed with early onset vascular dementia

[Kikki21]

Never thought I would be on this forum again but here I am. The man I have been dating has been diagnosed with early onset vascular dementia at the age of 47.

He has a number of health issues including high blood pressure, asthma, a tumour behind his left eye, already had a heart attack a few years ago & just recently his health declined sharply where the doctors were worried about his liver & kidney functions but these have levelled out.

I believe he has probably been depressed for a while but now he is admitting he is feeling depressed, has had several meltdowns where he just withdraws & is feeling nervous ahead of another hospital appointment tomorrow.

He doesn't want anyone to go with him to hospital either. He is due more tests, a biopsy, starting new medication tomorrow plus seeing a counsellor so it's going to be a demanding day.

His main symptoms at the moment are feeling extremely tired all of the time as he's not producing enough red blood cells but he isn't anaemic. He has some cognitive issues but they aren't too bad. He has fallen over a few times in the last few months. He is still able to work & to drive.
I know 47 is very young for such a diagnosis & the drs are also investigating whether he may also have Parkinsons as well. Coming on here for any support & advice really.

 

[Izzy]

So sorry to hear about your situation @Kikki21. 47 is so young - how terribly sad - for both of you.

I’m glad you’ve come back to the forum. You know you’ll receive lots of support and understanding here.

 

[GillP]

Oh goodness, this is so much for you both to deal with. So sorry about this.

 

[canary]

Hello @Kikki21 , its good to see you again, although Im sorry its under these circumstances.

My OH has gone into respite today and Im sitting here with a bottle of chianti and a pizza, realising how tired I have got from caring. Ive cared for mum, Im caring for OH and I never want to do it again. I dont know how serious this relationship is, but knowing what you do - do you really want to be tied to this man? OH and I have 42 years of marriage behind us, but you have nothing.

 

[Jaded'n'faded]

Hello again @Kikki21

So sorry to hear about your situation. I was also wondering how far into this relationship you are and how much it means to you. Young onset dementia often progresses very rapidly - do you want to become his carer? Does he have family to look after him?

 

[Grannie G]

I'm so sorry to hear what you are facing @Kikki21

 

[Bunpoots]

What rotten luck @Kikki21..

 

[jugglingmum]

I'm sorry to hear this @Kikki21

 

[Kikki21]

Well we were serious as we got engaged & then he got his diagnosis & it has all gone downhill from there. We've had a lot of meltdowns, withdrawals, then everything is good & then repeat. A lot of hospital appointments then become admissions.
This is currently the case, the hospital causes his blood pressure to rocket which doesn't do him any good. He has become depressed. It's very hard.

In terms of family, he has a grown up daughter but he would never allow her to become his carer at a very young age of 22. He has 2 brothers, one married with a family & another that lives with his mum who is also ill.

That leaves me. He was going to move in with me. I know that early on set dementia is something that can progress rapidly. Got no qualms about that.

 

[Banjomansmate]

Leave things as they are, with you each living in your own properties, that way, when things get more difficult you have your own place to retreat to. If Social Services need to get involved with assessments etc. they cannot expect you to take it all on your shoulders because you aren’t there and available 24 hours a day.
From experience I can tell you that even a short distance between you can make some things more difficult and you may have to cope with phone calls in the middle of the night but you can walk away and get some sleep in your own bed and still lead a relatively normal life when not physically caring for your fiancé. Just because you became engaged doesn’t mean you HAVE to marry him and as his personality could change drastically you might well not like the person he becomes. You can still support him in many ways but avoid the major commitment to marriage.

 

[canary]

Very, very good advice from @Banjomansmate

I have read many times on here about people who say they had met their soulmate, only for them to develop dementia soon after and then, they said, they were trapped, with little in the way of good memories to see them through.

 

[Violet Jane]

I agree with @Jaded'n'faded and @canary. You can support your partner without becoming his full time carer. If you move in together Social Services will not be interested as he will be safe with you looking after him.

You need to think about PoAs.

 

[Jaded'n'faded]

Just because you became engaged doesn’t mean you HAVE to marry him and as his personality could change drastically you might well not like the person he becomes. You can still support him in many ways but avoid the major commitment to marriage.

On the other hand and depending on both your financial circumstances, maybe if you've decided you definitely want to be his carer and live with him, marriage might be a sensible idea. It would give you rights (and possible money) afterwards and his house would be disregarded in a financial assessment if he had to move into care at a later date.

Yes, yes, I know it's awful to think of things in that way but I really think you should carefully consider how caring for him would affect your own future.