Carer/Partner of a stroke survivor

Tell us a bit about yourself here.
Hi, My names Ailsa, I have been with my partner for 21 years.
My partner (aged 40) had 3 strokes in the space of 6 days in March 2017.
He had none of the usual signs like slurring or facial dropping, he was just a little confused.
The changes in him after the stroke have affected him in many ways...
his memory is extremely damaged and getting gradually worse, this frustrates him hugely, he is very confused also.
Physically he has been lucky, he has weakness and pain in his left leg but nothing else physically, actually I lie, one thing that really annoy him is urinating, he feels needs to but cant go he can go 12 + hours without going which is not how he used to be.

Ive joined this site for a couple of reasons, ive googled numerous things but never seem to find what I need, alot of stroke survivors have paralysis or speech issues where as Kev doesnt, Im hoping to find someone that has the same care issues as I do, the same frustrations as myself because in all honesty Im struggling to cope right now

Thats enough of me rambling on, hopefully Ill find someone with advice or a place to vent
Hello Ailsa and welcome
Me, I've no experience of stroke but others have and will be along in due course I hope. What I, and all the others on here have is caring experience and will be happy to support you. What do you find most difficult about your role? Are you able to work; have a social life; get rest and respite..... just for starters :)
Kr
MrsA
Welcome to the forum Ailsa
Am very sad to read your post.
My husband sadly is in a nursing home because of strokes and vascular dementia. When he had the last stroke I found the stroke association very helpful. Are you able to contact them in your area. They talk you through alot of the difficulties than are encountered, and how to try to deal with them . You may find a number at your GPs.
The forum is very supportive, and you can vent as much as you need to.
MrsAverage wrote:
Fri Sep 01, 2017 6:59 pm
Hello Ailsa and welcome
Me, I've no experience of stroke but others have and will be along in due course I hope. What I, and all the others on here have is caring experience and will be happy to support you. What do you find most difficult about your role? Are you able to work; have a social life; get rest and respite..... just for starters :)
Kr
MrsA
Thank you very much.
No rest or respite, no work or social life.
Im having to stay awake at night as he has got up a couple of times and left taps running and once went out into the garden and didnt know why he was there.
Im struggling mostly with his confusion and memory, he cant be left in the house alone and cant go out alone, he seems to have no awareness of danger such as crossing the road.
He gets frustrated and upset because his memory is getting worse, he is 41 and is quite angry that at his age he is in the state he is. Its all quite hard for me to deal with to be honest, watching him go through this and having no way of improving the situation for him.
Pet66 wrote:
Fri Sep 01, 2017 7:17 pm
Welcome to the forum Ailsa
Am very sad to read your post.
My husband sadly is in a nursing home because of strokes and vascular dementia. When he had the last stroke I found the stroke association very helpful. Are you able to contact them in your area. They talk you through alot of the difficulties than are encountered, and how to try to deal with them . You may find a number at your GPs.
The forum is very supportive, and you can vent as much as you need to.
Hi, Im sorry to hear about your husband, I was a carer in a dementia home so I can empathise with you.
I have contact with them and use their site. its just most stroke survivors have issues with speech and paralysis or limp weakness where as my partners problems are more his mental side. I struggle to discuss it face to face as i end up crying, so online is perfect for me
Crying is very natural! They expect it to be honest. I've cried bucket loads, still do at times. It sounds like frontal lobe stroke,( I'm no expert!) This affects the personality. It's very scary which is more than understandable.
Are you managing to have some 'me time'.? It's very important. Have you any support network?
Pet66 wrote:
Fri Sep 01, 2017 7:39 pm
Crying is very natural! They expect it to be honest. I've cried bucket loads, still do at times. It sounds like frontal lobe stroke,( I'm no expert!) This affects the personality. It's very scary which is more than understandable.
Are you managing to have some 'me time'.? It's very important. Have you any support network?
Frontal lobe and pretty much the full right side of his brain so there is a lot of him
His personality has changed for the better (which sounds terrible) hes far more caring and loving
There are things that make us all laugh, we've been together 21 years and not once have i seen him eat cake or chocolate, since his stroke he cant get enough of chocolate or cake and if its chocolate cake you'd think it was all his birthday's come at once! :lol:

my me time is while hes sleeping, Ive been doing free online courses, watching films and generally just sat in the dark thinking. I can be my own worst enemy at times I guess.

As far as a support network goes its hard as he doesnt like people knowing how bad he is, hes only 41 and is very angry at being this age and going through this, I guess you dont hear enough about younger people having strokes.
Our youngest still lives at home, he has quite a good sense of what its like and will help in any way bless him.
wow look at me rambling on!
I meant support for you.
My husband also is cake mad now. Mixture of the strokes and dementia I realise. We've been married for 50 end of next Jan.
I understand that your partner is angry at what life has thrown at him. Who wouldn't be?. I'm angry at what's happened.
Back to you. I honestly feel it's NEEDS not WANTS now. Something you both need, not what your partner wants. I do not mean that harshly, But.... You will need some support, in order to carry on.
I know others will be along with advice. I wish I could offer more to you.
(((( HUGS)))
Hi Ailsa
Rambling is fine!!,
I'm concerned you are trying to do all of this on your own 24/7. I can understand how easy it is to fall into this situation immediately following such a shock and on his discharge from hospital, but it is going to be unsustainable over the longer term.
You need help and you need to start asking for it now, whether that's help so you can work or just have regular breaks
I understnad your husband's concerns, but he must start to understand that you have needs too. You will start to burn out and/or the stress and isolation will get to you. I dont mean to depress you but sometimes it takes someone from outside to say the obvious. What was copable in the short term is not workable in the long term.
Do you have family or friends who can come and be with him regularly, or would he go to some kind of support group perhaps?

And btw , its about this time when the intial shock and worry dies down that carers find us as they face the future. You are most defintely not alone
Xx
MrsA
Oh I forgot to say the Stroke Association has a forum and your husband may find it useful to start communicating with othe stroke suffers this way especially if he can find others his age.
I don't think it's quite as active as this one but worth a try
Here's a link to a thread by a 21 year old who had one
https://www.stroke.org.uk/TalkStroke/su ... e-one-year