We try to be positive but OMG it isn’t easy! Since my husband’s severe stroke last Nov life has changed in so many ways.
With just one working arm and leg there isn’t much he can do.
We go out as often as we can and he still gets physio but that is ending soon. He is very depressed which obviously rubs off on me. I get very little time to myself and the week is taken up completely with caring for him, his appointments, massaging his legs, doing physio exercises, sorting out pills, showering him etc.
Obviously I love him but it is so full on. Last weekend we had our first weekend away in an easy access caravan on the coast. He wasn’t keen on going as he was worried about falling but it was so well adapted and we are going to book again. It was quite hard work for me but we did enjoy it.
A lot of friends have dropped off sadly, so just a few stay in contact. I don’t have time to enjoy any hobbies or go out at all except the weekly grocery shop. The weeks are flying by, I am getting older and I cannot imagine doing this for many more years. I just want some time for me but I also feel desperately sorry for him because it is no fun being so disabled.
Hi @Penny
The easy access caravan sounds like a great find - can you share some details?
I thought I remembered your post last Nov… just in case others didn’t see it Carer for the third time
Sending over some hugs…I hear you about the whole friends situation. I know I put a fair amount of effort into sustaining connections with the ones I really care about but I can count them on my 2 hands.
Also, general connecting in person is tough, right?
But mostly, I think the perception of time is different - some people may have crammed lives of events and not think to connect but for caregivers that’s a huge amount of time for us in the care routine…I’m not blaming or excusing…I think I’m trying to say that connecting with friends who aren’t caregivers is difficult because we’re looking for quality resonance and connection but for others it may be a laundry list of events, achievements and news.
Sending over some hugs and making sure you know you’re NOT alone…we’re here!
Plus you may want to connect via the Cuppas:
@Penny hello Penny, sorry to hear your situation. When do your carers come into help. You need help to give you time to yourself. My friend is in a very similar situation with her husband and has care support. You can also get time away for yourself, with a friend, on Carefree, look at that to help give you a break.
You must make time for yourself, it is an adjustment in your relationship and you are probably in the stunned state we all are when we become carers.
You can get help and advice here, and just vent anger here too if that is what you need to do
Sending hugs
Thanks. We don’t have carers. The County Council sent in carers when he came out of hospital but we only had them for a couple of weeks as they were hopeless.
@Penny it is a decision you have to make on your own situation and you may later want to review this. I know my friend has been given her life back as she can take time away and know that her husband is cared for. My husband cannot get care as he has a mental health issue and it is not available.
I know I would like to have someone to come in, even once a week, just to give me some support.
So perhaps what @Victoria_1806 has suggested may be a way forward. I go to a group who support mental health carers and it has been helpful. I am also lucky that my friends have been here for me.
It is really hard to draw boundaries to protect yourself, but try to set them for you. You will feel for him obviously but you will be better able to care if you get time for yourself
Hugs
@Penny
I partly understand how you feel. So called friends pull away.
You’ve been through so much. Loving your husband doesn’t mean you can’t have times of despair. Feel very much for you
Hi @Penny So many people are uncomfortable around disability, they avoid contact. It’s not an excuse, really, but it goes some way to explain why they hold back - and then feel ashamed for it, which is the bigger barrier to overcome. So you end up being abandoned by the very people you thought would support you, at least emotionally.
It’s a proper bu**er.
Does your husband have any special interests that he enjoys talking about or anything? With my Dad, who had a similar stroke at 52 - he lost use of his right arm, most of the use of his right leg and most of his speech - photography was his thing. Initially we tried Instamatics as they were easy to use, but he hated the results. So we invested in what would now be called a “point and shoot” film camera. I worked out how to use it left handed (hold the camera upside down) and tested it out before he knew anything about it.
He loved it, and started getting back into photography again, even going back to his old Camera Club, until his eyesight failed.
There might be something similar for your husband?
@penny I am in a very similar situation to you and have every sympathy what what you are going through. My wife had a severe stroke more than 3.5 years ago now and I have been her carer ever since. She lost all use of her right hand side, has to be hoisted in/out of bed, etc. For her, poor thing, there is no improvement ever likely to happen. The effect on my own life has been pretty awful. I am indoors with her other than for grocery shopping, and can no longer do the various social and personal interest things I used to. The daily routine is a grind in that it is exactly the same every single day. Many a time I feel like I am just a servant. I try to stay positive and I am very fortunate that our two adult children are not far away and come to see us often and that helps my mental health, but it’s hard to see any future. Just this routine going on and on and on until one of us kicks the bucket.
Thanks Chris. It’s exhausting isn’t it? My husband does not need hoisting in/out of bed but needs help with pretty much everything else as he only has one working arm and hand and it’s not his dominant one. He can walk a little but very slowly with a quadstick and someone supervising but only the length of the room. Every day for me is pretty much the same making coffees, emptying urine bottles, providing a listening ear, doing exercises, pushing him around etc that’s on top of trying to clean the house, do the washing, cook meals.
I know he is grateful for everything I do because he tells me and thanks me every night but he gets really depressed and now hates the lounge which has become partly his bedroom. Physio came yesterday and told him she doesn’t think he will ever use that arm again so he must get used to his new way of life. She also doesn’t think he will manage stairs. This afternoon he asked me to take him in the garage/workshop but it made him so sad because all his hundreds of tools are in there, his motorbike and all his leathers etc, his horse riding gear and all his other hobby related items which he can’t even pick up let alone use. It makes me really sad too because he was always busy and never sat around watching TV, now that’s about all he can do. I am dreading winter because we have been getting out in the garden and in the car as often as we can this summer.
As his speech is poor and has got worse since my son’s cancer diagnosis, we struggle to have a decent conversation too which upsets us both.