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9 years of caring and continuing...

WeeDido

Registered User
Feb 24, 2020
18
west of scotland
Hello fellow carers. I have never posted on a forum before but have been following TP for a good few weeks now. I've been my husbands carer since MARCH 2011 when he suffered a bilateral brain-stem stroke He was hospitalised for 5 months undergoing gruelling physio rehab before he was able to come home. He has lost all mobility in his legs and has been in a wheelchair ever since he was discharged. we've been very fortunate to have care supplied at home for us through our local LA. His needs definately indicated that. BTW my husband was only 61yrs old at the time of his stroke. I am 9 years younger. Around 18months ago or so I started noticing some changes in my husband like forgetting how to make a phone call or how to work the TV remote properly. We.ve had POA since 2013 so I flagged my worry about my husbands forgetfulness to his GP. He arranged an appointment with the memory clinic and my husband was diagnosed with Vascular Dementia last March. If his many needs were challenging before, they were about to be 3 fold! His dementia progression has been quite slow but recently he's been having problems with communication and seems to have developed OCD (things to be done a certain way or a particular time etc) Is this common with PWD or maybe he's feeling scared and insecure? The thing I feel saddest about is he's never wanted to leave the house in the past 5 years. Thanksx
 

karaokePete

Registered User
Jul 23, 2017
5,433
N Ireland
Hello @WeeDido you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and if you are interested in this clicking the following link will take you there

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


You will see that there are Factsheets that will help with things like 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.


The things you describe are often mentioned on the forum so now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

WeeDido

Registered User
Feb 24, 2020
18
west of scotland
Hello @WeeDido you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and if you are interested in this clicking the following link will take you there

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


You will see that there are Factsheets that will help with things like 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.


The things you describe are often mentioned on the forum so now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
Thanks for your warm welcome I'll certainly look up those fact sheets and i'll def keep posting x
 

nae sporran

Volunteer Host
Oct 29, 2014
6,776
Bristol
Welcome to the forum from me too @WeeDido. Your husband not wanting to leave your home for 5 years is hard for to manage, do you get any support to let you get out the house sometimes ? My partner has vascular dementia, and she gets insecure if I leave her for too long or if we are driving through the city and the traffic gets busy or noisy. OCD is not something I have experienced, but it could well be related to anxiety and insecurity.
 

WeeDido

Registered User
Feb 24, 2020
18
west of scotland
Welcome to the forum from me too @WeeDido. Your husband not wanting to leave your home for 5 years is hard for to manage, do you get any support to let you get out the house sometimes ? My partner has vascular dementia, and she gets insecure if I leave her for too long or if we are driving through the city and the traffic gets busy or noisy. OCD is not something I have experienced, but it could well be related to anxiety and insecurity.
Hi nae sporran thanks for your welcome. My husband's hermit like exsistence I believe, stems from a particular time when he was turned down for for a outdoor/indoor powerchair about approx 6 years ago. He didn't have any ddementia issues then just lack of mobility and not 100% dexterity in his hands, so we think he was deemed to be unsafe to operate a powerchair outside. This decision had really knocked his confidence and then to add to that he was fitted with an indwelling catheter in 2017. He would just hate it to be out in public with that,so he's never ventured farther than the back garden:( When my husband suffered his stroke in march 2011 we were both working so obviously I had to keep my job on to bring in income and to pay for carers to come in 3 times a day. i eventually quit work in 2015. It was quite a lot to juggle everything. We,ve moved house twice but are now settled in a most appropriate home for us (ramp access, wetroom etc) Since his dementia has started he has lost more mobility and now has to be hoisted in and out of a hospital style profiling bed. He spends all day in his wheelchair watching TV.But he's seems quite content to do so. He's got such a lovely nature and is never any bother to his carers who now come in morning and bedtime. I understand how he's getting frustrated not being able to convey what he wants to say,not finding the correct words. thankfully I'm very patient. He's under the mental health team and a CPN comes to check him every month or so, I think at his next visit I'll mention this kinda OCD. THANKS
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,032
Yorkshire
hi @WeeDido
and welcome from me too
I think a lot of carers will recognise the OCD type behaviours you describe ... I wonder if they give some feeling of control, and some comfort
my dad also spent time moving furniture as he said the room didn't look right ... a different kind of manifestation ... I was amazed at what he could move and how far, without hurting himself ... I think he was transfering his feeling of himself not being right onto his environment; he could change/move the furniture, he couldn't change himself ... it was a bit of a nuisance but seemed to calm him ... he also wanted to move, as in move house, but never found anywhere he actually liked
 

WeeDido

Registered User
Feb 24, 2020
18
west of scotland
hi @WeeDido
and welcome from me too
I think a lot of carers will recognise the OCD type behaviours you describe ... I wonder if they give some feeling of control, and some comfort
my dad also spent time moving furniture as he said the room didn't look right ... a different kind of manifestation ... I was amazed at what he could move and how far, without hurting himself ... I think he was transfering his feeling of himself not being right onto his environment; he could change/move the furniture, he couldn't change himself ... it was a bit of a nuisance but seemed to calm him ... he also wanted to move, as in move house, but never found anywhere he actually liked
Hello @Shedrech thanks for your reply. Yes I think my husband def gets some sort of comfort from knowing that things that he likes to have nearby are within reach for him. He even frets when I lose my own glasses or mobile or whatever. I try not to mention to him whenever I've lost anything but he still seems to sense it! Another strange thing is he hates to see me throw anything away. He has to see and inspect it first before I can throw it in the trash! I just roll my eyes:rolleyes: He's better if there's regular daily routine which is fine as he gets up same time each morning and retires same time each night.The carers are always punctual I serve his meals at the same time every day. My husband's aware that he has dementia, shrugs his shoulders and says"oh well" What he's finding hard is this difficulty completing sentences and can't describe names for anything. I'm beginning to notice that he's talking less these days. You're certainly right about finding determination and strength when PWD put their minds to change something that's not to their satisfaction. thanks x