Don't feel like a good enough carer

[flower63]

Hello there...i am so happy to have found somewhere to talk. I feel bad every day as I am not caring for my spouse at home- I read about other people with partners in the same or even less dysfunction who have got their person home. I feel so guilty as I don't think i can do it and feel this terrible relief that i can come home every day after visiting and have the night to myself (and with our 14yr old daughter). My spouse had a massive stroke that left him only able to blink initially. Now he is a tetraplegic and cannot speak. But he is amazing and can drive a power chair- he only has partial use of one arm/hand. He needs full cares and hoisting. He chose to stay where he is for now and it is such a friendly supportive community I feel he is getting awesome care- but i feel selfish and a failure compared to others. The worse thing is that when he gets frustrated and angry, I find it hard to be calm, end up getting stressed and anxious, and even angry. Ironically we have a closer relationship since the stroke (he was very difficult to live with prior) and also i think because we only spend a part of the day together. I take him out places and want him to have things to enjoy, look forward to. How do you stop the guilt..its awful- no matter how many people who know us say how good i am and all that. I hate hearing it as its not true. Sorry for rambling...

[Myrtle]

Hi Flower and welcome
If your husband is happy where he is then you have nothing to feel guilty about
He's happy and you are making the most of your life while still having time and energy for your daughter.
Don't feel guilty because you don't care at home.

[Juggler]

Don't feel guilty about claiming time for your own life. And, as Myrtle said, he's in a place where he's happy and cared for. As I've put on another thread professionals can give professional and practical support and care. Family and friends give love and companionship. Think of it as a team effort and of the importance of the contribution you are making to his life.

[Lucy Carers UK]

Hi Flower63,

Really pleased you've found the forum.

It sounds like this situation is right for you, from what you have said, there seem to be lots of positive points - your husband is receiving excellent care, you have become closer, you have time to spend with your daughter. If you think that you couldn't cope with caring at home, then you shouldn't feel guilty about it; the way things are now sound like they are working, and maybe changing things would make the situation harder for everyone.

[michael parker]

Hi and welcome to the Forum.There is no right or wrong,we do our best and we do what we can.I see no need for guilt.Be positive,you are still a carer even if you do it from a distance.

[flower63]

Hi again and thankyou for your thoughtful replies...its so hard not to compare with others.
When people say is he home yet, i feel bad...and then a bit angry as they have no idea. i wonder if he feels disappointed in me. He has told people he doesn't want to be a burden to me. I feel like i must do more and more to make the time i spend with him worthwhile. People tell me to take a day off sometimes but i feel its an addiction that i must go and see him- especially now that he isn't home.

[Debra Found]

It is hard not to compare with other people especially when you see the amazing people on a board like this. However, each caring situation is very different - the carer & caree are different people, different family situations, the support in place is different etc.

There are loads of positives in what you say - just focus on them & see how everyone is benefitting from the situation -
Your husband is happy where he is & well cared for - with the state of care in the community would you get the level of support to provide the same care?
You & your husband have a better relationship - brilliant - would that continue if he was home with you?
You are able to have good days out with your husband - it is hard to expend so much energy into taking someone out if you know how much care you will need to do in order to get him settled that night.
Your daughter - She sees her Dad happy & settled, she sees a good relationship between her parents & is able to spend quality time with her Dad

LOads of positives. You have a massive job to do being a parent & wife & it sounds to me like it is all going well. If it ain't broke, don't fix it!!!

[Myrtle]

Flower you are doing incredibly well as you are!
People ask because they are concerned, which is good, but don't let yourself feel pressured because as Debra said it sounds like it's all going well

[flower63]

Yes- thanks..
I don't know if others feel the same but I don't feel like i should enjoy life or treat myself anymore because his life is so difficult now and he has lost so much. I feel guilty living in our home still. But not the right time to shift due to our daughter still at school etc. Guilt is a horrid thing!

[Minnie]

Sorry I missed your post,
You are doing your BEST, you are an individual with your own, life. pay no heed to
what anybody around you says. Guilt , you have no need for guilt, no one has, you
have a lot to deal with. Just keep telling yourself you are doing the best you can.
Minnie

[bowlingbun]

My son has SLD, I did everything in my power to keep him at home, but in the end had to admit defeat and he went into residential care. I found the best possible place, two hours drive away, across the New Forest and Salisbury Plain, but I never ever enjoyed the drive taking him there. I felt "Rat of the Year". My friends couldn't believe I'd "put him in a home". In the long run it was best for him, and best for me. He comes home very regularly, and we have real quality time together. The people who criticised me 15 years ago, are now amazed what he can do for himself, away from me. Everyone is different. You have nothing to feel guilty about, you didn't ask for him to have a stroke, you are just doing the best you can. When people ask when he's coming home, would it help to say something along the lines that he's unlikely to ever come home again, because he needs specialist care? Then they might gradually stop asking. Taking one day a week off from visiting, so you can concentrate entirely on your daughter's needs, would seem reasonable to me. Very soon she won't want to be with you any more, so don't miss out on these years, they are so precious.

[Scally]

I would defy anyone with even half a heart not to feel a bit guilty - I've been there too, mainly to protect my young children from having their home turning into a hospital and losing their chance of a normal childhood, but also because everyone has a "turning point" and it does feel a bit like desertion, even though it isnt, of course. But whatever you do theres guilt, so the best thing to do is just rationalise it away: decisions are taken for a very good reason and I admire your courage in bowing to the inevitable and making the most of the situation - clearly thats what your husband wants too (and why shouldnt he, surrounded by his team of care workers!).

[Brindleboy123]

Hi Flower, Just wanted to pop in and welcome you to the forum - better late than never! Sorry, I hadn't read your post earlier. I am hoping that the words and support you have already received will give you some help in smoothing your worries of guilt. "Caring" is/has been different for each and every one of us - sometimes hands on, and sometimes not. It seems from what you have written that the current situation is working extremely well for everyone and you should be very proud of your part in this.

Its wonderful that the time you see your husband is quality time.

Let the guilt go Flower -

Bell x

[flower63]

Thankyou all for the welcome and feeling of support- i haven't had it from anywhere- there is no-one in a similar situation in our stroke Foundation and our country doesn't have a carers forum. I so agree with the comment about not wanting the house to turn into a hospital environment and 14 yr old daughter was saying things like i will move out. I guess we all try to do the best with what has happened. God- don't you look at people with apparently "average" lives and think wow- forgotten what that was like.

[Myrtle]

Normality...hmmmmm. I remember that...............vaguely!