Husband has gone into care home,feeling wretched

[pozza40]

My husband has gone into a care home for a couple of weeks as i need some surgery myself and i am feeling wretched.

He has been at home 6 months now and i am quite honestly exhausted, its been a rollercoaster of emotions,trying to get used to this new man. He sounds like my husband and looks like him but its like he is not in there anymore.I am finding it really hard to get over what is lost for both of us. He is still spending pretty much all his time in bed,he can only tolerate an hour an day in his wheelchair and his pain is constant.

the physios have decided not to proceed with getting him to stand, as his left side weakness and his spatial neglect means he just cant get himself up and when he is up,after being hoiked up by the physios he leans so far over to the left he looks like he will topple.

its been 18 months since his stroke but no one will definitely tell us whether this means he wont walk again.

its all so disheartening and now my own health is suffering and i feel like i am abandoning him.sorry for the miserable post, i just need to get it out, and only have the kids, i certainly dont want to burden or worry them.

[123Bereft]

My update would be no less grim, Pozza, sending my best wishes, I think of you often. I hope your surgery goes ok. Take care x

[philbou]

As his wife and rock

You need to take care of yourself

If you fall then there’s no one to pick up the pieces

Try not to feel too disheartened

As you know it will only be temporary

We all know time is the greatest healer

And all my hopes are with you two

It’s a horrible responsibility that’s been thrust upon ourselves

No one is superman/woman

Everyone needs help from time to time

Please take care of yourself first and foremost

Be stoic

Stay strong

it’s all I can say

Some experiences on here make me feel very humble

But also very proud

We can all help each other out from time to time

This forum and the wonderful people on here kept me going

When times were very dark for me

I only hope it can help you too

Take care

[Leaf100]

Hi Pozza40You need to have him somewhere safe while you have surgery. 2 weeks is time for you to be well recovered?

You also need respite breaks sometimes, even when@ you do not have a surgery.

You are in a long haul situation.

I assure you, you are not somehow 'less than' for not being a robot who can work without rest, you are not somehow less than for noticing the symptoms of the injury and having human thoughts about them, you are not somehow less than for feeling this is going on so long and where is your partner in life.

Do reach out to Headway, and get some support, counselling, etc for yourself. His injury has impacted the entire family, and you need support as well.

Good luck with your surgery. Take good care of yourself, too.

Leaf

[MissT06]

Dear pozza, I feel you’re pain so deeply.

My husband suffered hypoxic brain injury on June 1st this year.

He’s in a neuro rehab centre currently. He can’t move at all and his contractures are very complicated not even allowing an operation to insert a rig.

I feel ill be following you’re lead once the care plan has been decided.

I have three children under 13 and I can’t see how it’s fair for their lives to solely revolve around a very poorly dad. I can see that in a nursing home my husband will be medically and physically well cared for. In a family home, having carers going in and out of the house I just can’t see it yet. And also the medical dangers that can be possible.

My husband is going to need 24 hours nurse with him.

Perhaps I’ll change my mind as my husband still has a very long hospital journey ahead.

But when that decision comes it’s will break my heart.

I also have very little support. His family are all here and they are there for him however from day one they have blamed me for the tragic circumstances. They have literally said his heart would have been stronger if it wasn’t for my complaining. I just cannot understand them, so I’ve distanced myself completely. Nobody can judge another’s marriage, we had our ups and downs but that doesn’t mean I didn’t love him.

It is also taking a toll on my health. My children are suffering.

I have got my mum living with me for the moment. But obviously she can’t stay with me forever.

To sum it up….I read you’re story and I can relate.

It is important to look after yourself. If you fall what happens to the kids?

I need to take my own advice as I’m not eating very well because I’m having anxiety attacks and feel sick.

Sorry if I’ve turned you’re situation all about me…I just wanted you to know I’m in the same situation except probably one year behind you.

[Painting-girl]

So sorry you feel awful Pozza, you're obviously doing the right thing to get respite care for him while you have surgery though. You've had a very traumatic time, and this is yet another hurdle. Hope your surgery goes okay and you make a swift recovery. Keep being brave. Prayers and a hug from me x

[Skallagrigg]

You look after yourself now, build yourself up, have surgery and recover ,you are important

[Carer16]

Hi pozza40.

This may make hard reading but I'm only putting my experience down.

My husband had a brain bleed 6 and a half years ago.

One day ok..next day after a ventrical shunt op( he has spina bifida) he was critically I'll.

Long story short..6 months in hospital. 18 months in neuro centre..he came home to "live".

I was determined he was going to enjoy family life, sadly he changed..wanted to he in bed most of the time.

We had carers 16 hours a week at first....I was superwoman.

His health remained ok during this time stable.. but day to day needed 24 hour 1 to 1 care. I couldnt even run upstairs to get a clean shirt or anything if it was my"shift"..

I know circumstances are different for everyone.

Fast forward.. our care package was increased to carers every night and 5 days.

And still... I hit burn out.

I loved him and fid everything yo get him the best quality of life...and I definitely neglected my own care.

Please... get the respite for your recovery time... and.. take what you need.... and ask questions because for us... there was a complete package available but I wasnt told everything til it got desperate... money saving...

But no ones health can have a price tag.

For us, sadly, hes now in a care home but he wanted that..says he feels safe there....theres many mental health reasons why and if that's what he wants then I can only accept that...because now I realise how I'll it's made me.

Please, take respite for YOU.

the person who has the condition.will be looked after by nhs to give you respite... but the person forgotten is you.

You arent going on holiday for a good time... this is your health... NB...there is respite to give you a break too have you been told?

It's ok this stay strong attitude... but as carers ..the affect this can have on us is immeasurable.

However things turn out for you. Or anyone else reading this... I am NOT being harsh to those who need care....I'm just advocating that the carer needs care too and you have to put yourself first.

I was often told...you need to look after yourself do you can look after him.....

It took a while to actually say NO... I need to look after myself for ME. And thats NOT selfish

I hope all goes well for your surgery. X.

[pozza40]

thank you for all your replies, they really do help. Knowing that there are others out there who understand and i can get things off my chest without worry of being judged, i really appreciate it. Thanks.Feeling a little better about things today, i think i didnt realise how much i needed a good nights sleep, 11 hours straight, with the knowledge that he is being well looked after, has already done me good.

[teresa12]

Hi hun you not on your own I know exactly how you feel. It only been 10months since my hubby had his stroke I the same all my energy and focus been on him I neglected my health. What we do our fella, hey might wind us up totally annoy us but we go to moon and back make sure they get betterMy lad can't stand he his much better in his chair he can stand about 4 hours I am the same in reality don't think he walk again but who hell knows

This site is fantastic found it massive help

Look after yourself hun you doing amazing job you got this you got strength you got love you got a good heart get yourself better soon x

[New_beginning]

Gentle Hugs to you. You just get better and I hope surgery is smooth and recovery takes as long as it takes.

Its mentally, physically hard and the impact does take a toll on our body sadly. . We're 18months now I would like to say it gets easier, but from our point its doesn't. I clung on to hope, hoping everyone's positive recovery would actually happen to my husband. Only recently realised this is far as his recovery goes and he has said this too. Feels like we're only just scratching the surface in a weird way now x

[F1951]

I had my husband home for 3yrs, after his brain stem stroke, lve never felt so exhausted both physically and mentally. Dont reproach yourself, you can only do what you can , unfortunately my husband never recovered, l know what you mean, its as if you've lost them but their still there.my husband was doubly incontinent and peg fed, so in the end it was taken out of my hands , The doctors etc had a multidisciplinary meeting and decided it was in the best interests of both of us if he went into full-time care, l was then able to sleep at night, as he used to shout me most nights, and the time l spend with him now is quality time, we play music, and have nice times when l visit, And l can go home and relax, so do take care my heart goes out to you, l wish you all the love in the world, take care of yourself, you need you!! And so does your children, take care . Joy