My husband had a severe stroke 6 months ago. I have done everything I possibly can to help him and encourage him. He is still in a wheelchair but trying to walk with a quadstick. He gets very depressed and I can fully understand that but today we had a big row with both of us crying and shouting.
We have not been out for a week and stayed in all Bank Holiday so we both agreed we would go out today if the weather was good. It is lovely so I loaded him into car with wheelchair, urine bottle, modesty towel, drink, etc then he says he doesn’t want to go far!
We went to a nice village and we sat in the car (he wouldn’t get out) and I got him a cider and a scotch egg. I wanted to get him in the chair and we could have a walk but he refused. I got out and had about 10 mins looking in a shop. We then drove to the seaside and again he wouldn’t get out or even drink his can of cider. He used his urine bottle so he could have done. It’s always a palarver getting back in our house up the ramp with the wheelchair but I never say anything. Today it didn’t go well and he started moaning that it’s not worth going out. I shouted at him, he shouted at me, he said he might as well be dead and I said when he’s miserable we are all miserable and I can’t make him better again so we just have to cope as best we can.
My special needs daughter then came in and got the wrong end of the stick and as usual it’s all my fault.
I am sick to death of trying my best, organising everything, doing physio exercises every day with him, emptying urine bottles, cooking nutritious meals, jollying him along, keeping on top of appointments, hardly ever going out, planning my day around toilet trips and sleep times etc. it is absolute s**t and I never expected to be caring again at 71. I get no time to myself, I hardly see my friends. I don’t even have time (or interest now) to enjoy my hobbies.
My husband does not want to see a counsellor, he will not take anti depressants so I don’t know what else I can do.
@Penny
I know it’s a long shot but have you been in touch with the stroke association? Hopefully they can offer you some support.
I can understand you crying so much. ( Remember it well)
Sending you big hugs (((()))
Penny, your last sentence says it all.
HE doesn’t want this, that or the other. What about you?
Maybe suggest residential care so YOU can do what you want?
If he won’t have counselling, you need it even more.
@Penny Heart goes out to you, I totally agree with BB.
Can you leave him for periods of time? If so, then go out without him. You sound totally at breaking point. You have every right to a life of your own as you sound at high risk of sinking into clinical depression.
Can you go and see your GP and tell them you are at breaking point?
You have gone the extra mile for your husband and if he cannot or will not meet you half way, then frankly it is YOUR survival that matters.
If you have a local Support for Carers please phone them and see what they can suggest.
@Penny…I’m so sorry you’re going through this. Please try and find some time for you if you can, even if it’s just going for a walk and getting out of the house.
Dear Penny
Bless you
I am sitting here feeling fed up myself,
Then I read your struggles and loneliness,
I hope you can find some relief soon,
Your amazing Ula
@Penny Sending hugs
You’ve been doing so much - WE know what that means in terms of time, energy, mental and emotional effort. WE see you.
When he’s like this may be the very first thing is for you to go out 20-30mins each day…just to get out.
If you don’t feel comfortable leaving him on his own, ask your daughter to sit with him or see who else can just be there…but you need time for you
whatever is going on in his head - stroke related dementia, or whatever…you can’t reason with him…
Giving care doesn’t mean healing their mind, body and spirit - it’s impossible.
Perhaps, the thing for you to do is MORE for yourself and expect less of him (harsh - sorry!)
I may’ve missed some important details about your situation - I’m sorry
You’ve obviously been going above and beyond what’s possible already - so find what’s necessary to keep him safe at home with someone and go out for a while.
As long as you can feel you’ve made him safe and can go, ignore him if he complains about you going out.
Sometimes something has to change, and from my point of view the only thing we’ve real control over is our own actions.
Please feel free to ignore all this if it doesn’t resonate - every situation is unique, and I respect that.
You’re not alone. Let us know how you’re doing.
Hubby is right that trips out aren’t worth the effort - if all he does is sit in the car. It’s easy for me to say this, but you need to tell him how you feel. The fact that you’re struggling too and that your health is starting to suffer. You need help from outside, urgently - and he needs to deal with the new reality. It’s only six months since the stroke. The brain takes at least 12-18 months to recover what it can. If he doesn’t try to do things, he won’t improve during that time. And he’ll just sit in the car, wishing away for his health back.
Yes, some people will look at him if he gets out of the car. But they’ll only see a pathetic old man if that’s what he shows them. He can show them a fighter - someone who has faced down adversity for years and isn’t giving up now.
It’s up to him.
In the meantime, he needs to accept that you can’t do everything and you need time for yourself - even if he comes along, providing he makes an effort.
Penny, I joined an online forum for widows after my husband died. We all agreed that our lowest point was six months after our partners died, when the formalities were complete and it dawned on us that this was how our “new” lives would be, going forward.
From this, I would suggest that you are both at this awful low point, both grieving for your old lives? Be kind to yourself, if you can’t do as much as you feel you could or should, then give yourself permission not to do it.
You are not Superwoman!
You are a “multiple carer”. When I was in this situation supporting four elderly parents as well as my brain damaged son, medical staff were only interested in the patient in front of them, forgetting I had health issues and all the others too!
As your daughter has Down’s Syndrome, you were already doing a great deal of caring. Is anyone recognising this?
Has your husband become totally focussed on himself now?
@Penny How are you doing? I and I am sure others on the Forum are thinking of you. I would literally beg you to forge some kind of life for yourself independent of your husband. Necessary for your own survival.
I’m so sorry to hear this Penny and I am in a very similar situation myself with my husband who is a wheelchair user with advanced Parkinsons and a paralysed right arm following spinal surgery. He has always been against having carers in to help out and allow me to have some breathing space but as I had a cancer diagnosis and hysterectomy recently, he thankfully agreed to having one. Carers now come daily and twice a week they take him out to the hydrotherapy pool and toning suite and it’s really given him a boost. He chats away to them and has a laugh and a joke and having a care package has made a big difference to both of us. It sounds like your husband is very depressed and you are understandably at the end of your tether, as I have been numerous times over the years, so please look after yourself and think about ringing Social Services to get a social worker to come out to do an assessment. What’s also made a huge difference is getting an electric wheelchair, as my hubby can now get around independent of me so now when I go to the park to walk our dogs sometimes he will come with me and shoot off on his own and we meet up again later at our car, which is great. Anyway, wishing you all the best and sending you a hug.
)))