New carer!

I am a new carer for my partner who has recently had a Stroke, after 5 months I am struggling! Our relationship is now strictly a carer patient situation, and I am struggling, my partner is 60, I am 53

Hello Peter & welcome

Can you tell us more about what you find the most difficult.

Has you partner had a needs assessment and you a carers assessment.

Have you joined a local carers group. These groups you might find like minded people and advisers. Who can help in other ways.

Hello Peter
Welcome to the forum.
Have you been in touch with the stroke society, or they with you?
I’m sad for you and your partner in this situation. You are both grieving for life before the stroke, in all probability, and in shock.

Thanks for your replies and advice, it’s been 5 Months now although my partner is getting stronger, the hardest part for both of us is knowing she will never be the Woman she was pre stroke, and our relationship is no longer the same! It’s gard and each day doesn’t seem to get any easier.

Try to put things into perspective.
You have both had a “life changing moment” but are both still here.

I won’t go into my full life story, but I’ve had huge challenges.
I found my husband had died in his sleep, when he was 58 and I was 54.
My youngest son was brain damaged at birth, he’s now 41.

You are both still grieving for your old lives, and an element of this will probably be with you forever.

However try not to focus on your old lives, looking back too much might destroy any hope of future happiness.
Think of what you can still do.
Try to pinpoint the barriers and then share them with us.
Holidays are still an option, but you may need different holidays, for example.
Have you been offered any counselling?

Hi Peter,
I know exactly how you feel, my husband had a massive stroke last year, I’m now his full time carer, it’s horrible, next to no improvement, I find this forum very helpful keep strong

Delily, are you getting time off regularly?

Yes I will keep checking the forum, I am finding it good, I feel guilty all the time and I don’t know why, sometimes I just feel I can’t do it!

The only counciling was a few sessions with a phsycologist but this was just for my partners emotions!

If you can afford it, have private counselling from someone who can support you long term.
There are things you need to “offload” to someone which you cannot share with your wife.
I found it incredibly helpful when I was newly widowed, newly disabled, with a disabled mum and a disabled mum to manage too.
Life changing.

Hi Bowlington,
No I get no time off, given my full time job up to look after my husband he can’t do anything for himself apart from eat his food if I cut it up for him.
I totally understand you Peter I often feel guilty for feeling like I can’t do this , but then I just kinda get a grip and carry on.
I feel very isolated especially through this lockdown we’ve just come through, I have found this forum brilliant company and a comfort knowing there is other people out there that understand, I would love to meet other people in the same situation as me to chat with, stroke is a shock and life changing, I so miss our old life.
Keep strong Peter, take care all

He should have had a package of care organised for him before discharge!

You can’t care at this level with no help. Have a look at " NHS Continuing Healthcare", especially the checklist.

Morning Bowlington,
Thanks for your reply, my husband and I decided we didn’t want a care package, strangers coming in and out of our home and lives, so I gave up my job to look after him, I’ve a good routine now got it off to a fine art as they say, he’s got eight siblings which never phone or call round, out of sight out of mind.(I’m not going to beg them either and hubby says he doesn’t want them they’ve always been the same whatever that means)we just had the biggest shock ever now we are just trying to get some kind of normal if that makes any sense.
I have now managed to get hubby in the car it’s hard work his wheelchair fits snug in the boot, he can’t stand on his own lost all use down left side, I do exercises daily to try and get him stronger.
So basically that’s it really, it is what it is, sorry this is a long rant thanks for listening take care

It’s all very well trying to avoid anyone else coming into the house, but it’s a really dangerous policy!

No one knows anything about the daily routine of your home or your caree. What would happen if you had a sudden illness, an accident, or similar?

It also means every day is a slog.

If you had someone else involved to do things like the cleaning and laundry, the gardening and odd jobs, you could think “X is coming today so I can go and have a massage, my hair done, a long lie in the bath etc. etc.” It would also give you someone else to talk to, being a carer is very isolating.

As carers, we should never think we will last forever. At 50, my husband and I were fit as fleas, or so we thought. At 54 I had major surgery, at 56 I was nearly killed in a head on smash with a boy racer, at 58 my husband died suddenly of a heart attack.

Hi Delily
I absolutely agree with Bowlingbun. My husband had a major stroke, after which we discovered he had several tias. Previously we were tootling along happily, hubby thinking of the next holiday we could enjoy. Our lives changed dramatically, he never came home again, sadly vascular dementia followed and he was in a nursing home. Not long after he went into the nursing home,
( not my choice, but his needs warranted ) I fell and broke my wrist. Nothing like Bowlingbuns life threatening illness, or dreadful road traffic accident,but never the less I certainly couldn’t have cared for hubby. No one knows what the future will bring,so please consider having some help. I almost had burn out visiting hubby, and care managing his needs. We had been married for 52 years and loved each other very much.

Thanks so much for listening and your replies, wow I’ve never thought on the angle of me not being able to do it, can I ask how do you get someone in just to do jobs like gardening and how much does it cost?

It largely depends on your financial circumstances.
If you have under £46,000 in savings, then the council will pay for some or all of the care your husband needs, through Social Services.
Hopefully your husband is receiving Personal Independence Payment, and you are getting Carers Allowance?
Cost varies between £10 and £20 an hour.
With regard to gardening, the best solution is to fill in every single border, remove every tree and shrub, build a large patio where you can sit and enjoy the weather, and have someone cut the grass every week or two.
I have a very large garden, but was disabled in a car accident. My eldest son gradually persuaded me to do all the above, and I gradually reluctantly agreed. It’s life changing! Now I can sit outside and never see another job that needs doing. I had lots of pots on my patio, but am now in the process of giving away many of the hydrangeas which lived in the pots.
I’d rather save my energy for more important things like sewing!

Hi Delily
I feel for you, I realy do because I suppose we are like a lot of people that are forgotton I too gave up my job to care for my partner. It’s like grief but yor not allowed to grieve, I will never see my partner as the sexual partner again, how bad, and selfish does that make me sound?? But that’s the way I feel, and because of this I feel in a Cul de sac but the last thing I do is let my partner know my feelings, because I am 100% behind my partners rehabilitation that is priority, but it’s hard!

We have the carer package 2 visits per day, but because I do everything for my partner they are only here for 10 minutes, we was going to cancel the package but i’m afraid just in case something happened to me, who would look after my partner.