Feeling exhausted,

[F1951]

My husband suffered a brain stem stroke 3yrs ago, since then lve been caring for him ,l'm 68yr old,and l'm exhausted, he can't move very much can't sit up or walk,he's got a pubic catheter in situ, over the last 6months he's got no control over his bowels , he contracted VRE whist in hospital, so it's quite a worry , he's tried to take his own life by storing paracetamol in his cheek, he'd been putting them in his pocket, the carers found them in his pants pocket, the mental health nurse came out on Monday and said they'd had a multidisciplinary meeting, and thought it was time for him to go into full time care, as sometimes he soils himself and has to sit in it all night, as l'm unable to move him on my own, They said it had reached a crisis point for both of us, but l feel so guilty even tho l'm finding it so difficult to cope, he hates going into respite, l'm at my wits end , as l love him dearly we've been together since we were fifteen, and l feel like l'm letting him down , help!

[Hidden]

You are not letting him down at all. You will be a much better wife to him when you are not so exhausted. It is too much to care for someone 24/7, in a care home the staff can got home when they have finished their shift. You can visit him as often as you wish, he will be clean and cared for and all your time with him can be spent enjoying being together, not you having to rush off to do the next job. Find nice things to do with him - take photo albums to look at together, listed to music, anything that you both enjoy and DO NOT feel guilty. You have done more than can be expected.

[F1951 in reply to Hidden]

Ah thankyou that's what the nurse said, that l can become his wife again instead of his carer,x

[cat3]

What a dreadful dilemma for you F1. But surely it's time to step back and allow your husband to be cared for professionally otherwise you'll be too exhausted to care for yourself let alone him. As exhaustedwife points out, care staff will take turns in caring for your man's many needs and, though it'll be strange for you both at first, you can see him daily but without the physical and mental toll on your own health. And his life might be enriched by new faces, plus extra hands to lift & turn him more easily and, with night staff in attendance, relief from the discomfort his incontinence causes. And of course a happier & less exhausted wife.

After 53 years it's a massive, life-changing decision but to continue being a positive part of your husband's life you must protect your own wellbeing if you're to avoid nervous & physical meltdown. Keep both yourselves safe and comfortable m'dear so you can get respite and freedom from such a heavy responsibility and he can receive 24/7 care.

We're always here if you need an 'ear' so please come back and update us on the situation and let us know how you're coping personally. Best wishes m'dear, Love Cat x

[F1951 in reply to cat3]

Thankyou cat your allways there, with good safe advice, will keep you posted xx

[Shon48]

I’m so sorry you are going through such a rough time. I’m sure your husband must hate being like this and to be honest , I personally wouldn’t want to live either . I think you have to go with the experts and get the help you both need . If it’s taken out of your hands it reallly does help in the long run. I’ve had personal experience of this and the relief of was phenomenal. I felt guilty for a time but I knew it was for the best . I hope you can come to terms with it all . The carers will be fabulous I’m sure and you can visit whenever you want, go out too if he wants to. Just knowing he is being cared for will help you both .

Bless you both 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Kavib]

You have to also look after yourself and a happy you will also be a happy him. It must be so difficult for you to see him this way. I feel family and friends sometimes suffer more as they have to see what is happening to their loved ones. If he goes into care then you can still visit and spend time with him everyday ? this may help your relationship stay stronger and you will also get some rest . Doing this does not make you love them any less just makes the love and bond stronger x

[DTBI]

You must definitely look after yourself, as you could become as poorly as your husband should you fail to do so. None of it is your fault, you need to get him in a care home, you will still be able to support him but in much more suitable and safe circumstances. No doubt it is an emotional challenge, but I believe you can support yourself by focusing on the positivities that you would both receive from a care home. God bless you both x

[maureen103]

If your TV or car or washing machine stopped working properly you would get some professional help and this is just the same. I have seen both sides. I was a professional nurse before I retired and so can see the care in a home side but I also had a SAH so can see that side too. It seems when I was in hospital I always asked to go home with my family when they left but in reality I did not mind and have no memory of feeling that I wanted to leave hospital. Life in a home can be very fulfilling for everyone. They have the energy and skills and resources to do far more than you can. Don't feel guilty. You are doing what is right. Treat it as dating time again. I am not trying to minimize the anguish you are going through, just trying to help you see the positives. My best wishes to you. x

[Lynd]

A heartbreaking time for you.

Once the decision is made though you can plan visiting and you will be able to spend lots of time with him without the worry of making sure all his needs are met yourself.

It has a big emotional impact though on you and it will probably take a while to come to terms with.

Take care.

[TaIaV]

Dear F1951

What a very trying and sad time for you. Neither you nor your husband have done anything to deserve this suffering. Although right now it is hard for you to see a path forward to a better future, there certainly is one and it is beginning to reveal itself to you.

The fact that you have access to a care home is a wonderful thing. It is clearly not perfect as you two will not be together all the time, but both of you will benefit greatly.

- He will have true round the clock care.

- He will also not feel guilty for your exhaustion and continuous worry. (I know that this is a presumption on my part as you did not mention this, but you are clearly a close and loving couple and I imagine that such guilt may well be part of his torment.)

- You will certainly be less exhausted

- You can focus on the higher order of things he needs, such as distraction, the little extra care activities (e.g., foot massages?) that can boost his comfort and enhance his troubled existence.

- By protecting your health you will have the comfort of knowing that you will be there for him in the long term. In the current situation that seems in jeopardy.

- You will have the physical and emotional space to see the situation from a broader perspective. Your days now dominated by the physical effort, grim details and very basic suffering of each of you. You have not had the time or energy or experiences by which you can come to peace with the new characteristics of your lives.

If we were sitting together, I would advise you to:

1. Take the step the nurse suggested and move your dear husband to the care home

2. Devote the next two months to making that transition successful for both of you:

- Ensure that you understand how to maximize the quality of his care there by:

o Spending a fair amount of time there understanding their routines, the people involved, the differences between what they do and what you did for him at home

o Talking to the families of other people in that care home to get advice from them about what to watch for, what care gaps they found that they need to fill, etc.

o Taking a few things that make his room feel a bit like home so that both of you feel more comfortable and so that the staff gets a sense of the two of you as real people.

- Focus on your rest -- the house may be a bit of a mess given all that has been going on. No need to get it all back in shape right now.

- Start some form of emotional recovery activity (things such as relaxation with music, meditation, prayer, quiet walks) for yourself. Something that does not have you mentally rehashing worries, but, instead, clears them aside for some time to start your progress toward peace.

3. After 2 months, hopefully you will be able to look at the situation with satisfaction. You will be in your new role as the able steward of his care instead of main caregiver. You will have improved mental clarity that comes from not being exhausted all the time. You will be able to set up a visit schedule that meets both your needs. Your husband will feel more tranquil based on sensing less distress in you. You will be ready to seek and actively engage in more of the emotional and spiritual recovery ideas and activities and share them with your husband. I do not know if there will be improvement in your husband's physical condition, but it seems very possible for the two of you to make strides in your joint and separate response to it.

I hope this is not too presumptious an input. Please do not feel guilty about not caring for him at home. Your role overseeing his care at the facility and attending to your joint and separate emotional/spiritual needs are quite essential and are the best use of your time, intelligence, and energy. My husband and I are very close like you two. I hope I can take my own advice above in the future. All the best,

Taia

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[F1951 in reply to TaIaV]

Thankyou so much for all the lovely words, l need to be reassured by all you lovely people,