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Caring for my Dad (47) after stroke - Carers UK Forum

Caring for my Dad (47) after stroke

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Hi everyone.

My dad had a massive stroke in March this year which has left him physically disabled and cognitively affected. The stroke killed almost all of the right side of his brain. Thankfully he is able to talk. It was a long 5 months in hospital but he went from having no body or even amy head control and had no nutrition for almost 3 weeks to now, being able to walk very short distances with the help of a leg splint and quad stick. He never regained power back in his left arm at all and we very limited poor power in his leg. His braon damage has left him with very poor short time memory. He is unable to retain any new information. Since his discharge home 4 weeks ago. I am struggling to cope emotionally and physically. He wanted to live in his own house on his own, I respect his wishes and do think it's for the best for both of us but I am burned out! I work full time because I need too, dad gets carers in 4 x per day (which he needs to pay for because he is under 65 .... JOKE) bit I am there every day 2 and three times per day. Doing his washings and housework etc. Taking him to appointments, trying to get him out the house and do nice things. I feel it's all too much :(

My main issue is that the stroke has changed my dad so much. I miss my old dad, I miss everything about him. I know I should be bloody thankful he is still here and is doing well considering but I am grieving " My Dad" the man he once was has gone and I have some1 else in his body. This I am struggling with hugely. I feel I can't tell anyone how I truly feel as it would so bloody awful.

His memory and his behaviours I can struggle with too. I sometimes get mad at him for asking the same questions over and over and his behaviours towards me (no1 else) and get mad at him. I have shouted at him a few times and had to walk away because I am so frustrated. I know it's not his fault, I know I should be more patient but sometimes I just think " aaagghhhhhhhh whhyyyyy r you being like this??? "
My dad has a heart condition and stopped taking his meds "cos he felt great" they're saying this is people the cause of his stroke.

I think I'm angry with him in a sense. Like " WHY DID YOU STOP YOUR MEDS ?????" It's your fault this has happened!!! Obviously I would never ever say such things to him but in my head that's how I feel at times.

I know I am a horrid person for getting frustrated at him and he will often swear at me etc if I have a go at him but 5 mins later we are best pals again. I love him with all my heart and worry about him every minute of every day. I make sure he comes first always and he never wants for a single thing.

I don't know anyone who is a carer at my age or with the same kind of situation. Basically I want to know if all these feelings are natural? Or do I really need to seek professional help or some sort of Priest to banish the badness in me :(
My main issue is that the stroke has changed my dad so much. I miss my old dad, I miss everything about him.
Change stroke to MS, change Dad to wife and you have my situation and feelings. I don't think you're bad or any different to thousands of other carers.

My wife doesn't get a chance to not take her meds but she can cause me frustration and anger in so many other ways.

Just yesterday evening, finished dinner, cleared dishes away to the kitchen where I stayed for a while until returning to the lounge with my evening caffeine fix, the wife spends about five minutes going around the houses to tell me that she wants to use the commode, it takes about ten minutes to hoist her onto the bed remove clothing and hoist her onto the commode, she has very little feeling or knowledge about what's going on down there and because of the delay in telling me that she needed the commode she pooed on the floor on the way from the bed to the commode.

This not a first by any means, I'd say it's about a monthly event, and I could bore you with many other such things, but I feel I'm entitled to be annoyed and frustrated when it's avoidable.

It's muggins here who has to clean it up and all because " I don't like to bother you" or " I know you've got a lot to do" Yes you silly ****** and now I've got even more to do and it involves cleaning your shit from our bedroom carpet!!
Who told you that "dad had to pay for his care as he is under 65?". That is NOT CORRECT.

I'll deal with the money issues first.
The LA shouldn't impose ANY charges without first doing a full financial assessment, looking at his income and outgoings and then working out how much he can pay.
If he has over £23,000 (roughly) then he will be exected to pay the full cost of his care.
Did you know that the first 6 weeks of care after discharge were free?
Do you have Power of Attorney? If not, this needs to be done asap.
Help dad to get all his financial details together, ideally in a ring binder, with a different section for each subject.
Has he made a will?
Claimed Personal Independence Payment, both Care and Mobility?

Sadly, you can't make dad better. You can't do everything he can't either.
You NEED to work, you have a long future ahead of you, with hopes and dreams that should be fulfilled.
Dad NEEDS people to look after ALL his needs.
Everyone wants to go "home" but is it practical for him?

Does he own his home?
Do you live with him?

Doing his washing - NOT YOUR JOB
Taking him to appointments - NOT YOUR JOB

Imagine if you were not around, someone else would have to do these things for him, and that "someone else" is available. A washer/dryer would make it easier for the carers to do the washing, otherwise make sure he has a tumble dryer and they use it.
Has he got a dishwasher?
No, of course there is nothing wrong with the way you're feeling! Good grief, it would be impossible NOT to feel as you are feeling.

You are in a dreadful combination of 'bereavement' - as you say, the dad you knew is 'gone' (though see below) - AND 'carer-collapse' (because you are doing FAR too much for him.)

You cannot, and should not, be supplying as much care as you are. You don't mention a mum, so I take it she's not on the scene, and you don't mention siblings either - so maybe none, or they live far away?

Does your dad have siblings by the way?

As BB is saying, outside help must be supplied, and quite frankly, EVEN IF your dad is required to pay for it, so be it. Because the alternative is you running yourself into the ground.

Think about it - how long is your dad going to live? That's the timeframe you have to think about. I know it's awful, but are you going to be doing this in five years time, ten years time ....twenty,thirty years time? He could live another fifty years!

What about your own life? You say you work, but what about a partner, children? How would they fit into this 'perma-carer-for-my-dad' scenario?

The trouble with caring is that what we can do for a period, we cannot, and should not do, 'for ever'.

I hope that the collective experience and expertise of all the members of this forum will help you move forward to sorting out more help, to ease your dad's life AND YOURS. A term often used on this forum is 'care manager' - ie, not 'hands-on-carer'. We can organise the care, and 'manage' it, but we do not supply it ourselves (other than what does NOT 'eat up our own life'.)

I also wanted to ask if you are in contact with any of the associations for stroke patients? Research is ongoing, and prospects are improving. The brain is a flexible organ, and new pathways can sometimes be created. You should not give up on your dad, and by involving yourself in the organisations that focus on stroke patients, you can help him hopefully regain more abilities than he currently has. Think of the improvement he made in hospital from that first dreadful attack. Also, treatments improve ALL the time in every medical field, so do not give up hope on that front.

FInally, did he cause it himself? Well, yes and no. Some illnesses are self-caused (eg, the diabetes epidemic currently being caused by mass obesity), but some are not. Stroke can affect young healthy people, as well as those with existing pre-conditions. (My husband's cancer was doubtless related to his heavy smoking in his teenage years and twenties....he 'got away' with it till his fifties....then his cancer was diagnosed....)

So yes, 'blame' your dad in some respects for contributing, but the damage is done (alas.)

It's perfectly perfectly perfectly natural to feel deeply resentful (BOY was I resentful of my MIL 'collapsing' on me with dementia five years ago - I was SO angry! It wasn't her fault she had dementia, but I was FURIOUS......)

It's still 'early days' for your dad adjusting to his life post-stroke, and a better balance between you and him CAN be found - but more help for you is absolutely essential.
Hi Kay
I just wanted to reply as my Dad had a stroke several years ago and was affected badly, he lost speach and ability to walk and went from being a walking dictionary to someone incable of even writing his name. I don't think he was affected for so long or as badly as your dad but I never got him back 100 %, I always thought I had about 75% of him back which decreased again over the following years. It is a very natural grieving process and one you are having to deal with being in a state of shock and at the same time cope with all the practicalities. It sounds to me as though you are coping in a remarkably balanced way given the circumstances. I see no reason at all for you to confess to anything even slightly bad although you may take comfort in just chatting to your priest.
Thank you all for your wonderful reply. Im just feeling very lost with everything. It's whole new experience. I do have POA and this is still proving difficult when It comes to his welfare. Professionals are going in and discussing things with him and getting him to sign things like "consent to share" when in fact he does not have the understanding or Capasity to do so. Ever feel like your banging your head off a wall?
He has no savings etc so just waiting on PIP coming back with a decision.

I do not have any siblings and he does not have a partner of anything. He has me and my partner who is a HUGE help, althou it is telling on our relationship :(
Kay, can I ask how old you and your partner are? I guess in your early twenties?

Do not sacrifice your dreams because your dad had a stroke, or you will regret it forever. Dad CANNOT come first.

Try to think of your role now as "Care MANAGER" not provider.

I understand that this is a whole new world to you, and you are struggling. I'm now 66, I've been in this "world" since I was 19, in various ways, long before my son was brain damaged at birth, so let me, and others, help you to navigate the system, and take more control.

Do the professionals know that you have POA. Send a copy to the Social Worker and ask him/her to "put it on the system" (email with a covering note to explain that dad no longer has "mental capacity" in your view. You must be involved in any decision. Ask them to communicate with you BY EMAIL so you can read it when you have a quiet moment. Actually, you want it in writing as evidence, so no one can deny what was or wasn't said.

Put all dad's paperwork in ring binders or lever arch files, so you can find things quickly and easily.

Ask your GP to arrange counselling.

The biggest decision of all is whether it is realistic for dad to stay in his own home.

However much he might want to stay there, can it be adapted to suit his needs, or would it be better for him to move to some sort of sheltered housing or share accommodation?

Can you tell us more about what his home is like?
Who owns it?
Is it suitable for someone who is severely disabled?
How many bedrooms?
A bungalow or house?

Do you know if you have any "right to succession" of the tenancy? (Did mum ever live there? Would you like to live there?)

Sorry for all the questions, but if you work through them gradually, it might help you sort out your thoughts as you do.

You need to help dad develop a new plan for his new life, however unwanted that is
I had major surgery, lost my husband, and was disabled in a car accident, all in the course of two years. I hated my new life too!
Hi Kay,
I could not relate to your post more!
My dad suffered a stroke august 2019 and sounds almost identical to your dad.
I often feel the same way you do. I live with my dad and i feel everyday off from work is filled with washing and cleaning.
And i often feel bad for missing the dad i once had because he is the one that had the stroke and he will miss who he once was too but it is hard and until someone is going through this they will never understand the feeling that you cant help but put them first. As much as i hate it and want nothing more than to just run away he is my dad and if the shoe was on the other foot he would never leave my side.
Carron, you are his daughter, not his skivvy!
Is he claiming Attendance Allowance? That is designed to pay for the extra costs of disability,like a cleaner!
Has he had a Needs Assessment from Social Services to see what help he needs?
Hi Kay01_1808
I relate so much to what you're saying as my husband had a severe stroke 3 years ago at age 45 with about 70% of his left hemisphere affected.
So it is still early days for you and you're adjusting to this huge change. I understand the grieving you described and that will be a process and I still have waves of it myself but cope better than I did in the beginning. Hang in there and be kind to yourself 🤗

The transition from hospital to home is a challenging one and all the practical aspects you are putting in place. When PIP comes through, look into carers allowance although it depends on how much you earn.
Also I got the stroke association to pay for our wills so that is worth looking into. Join the stroke association in your area, ring the national helpline for advice and get your Dad signed up to some groups that they will provide locally, they will give you a break and a chance for your Dad to meet other stroke survivors.
My husband also went to a rehab group with physio and OT's present and so there may be something like that but you have to ask, ask, and ask again.
Get a carers assessment from social services and that is just for you, so for example I had another assessment recently so I asked for a sitting service for some respite (and it's free as it's for me not hubby). As a result, from next week I'm having 3hours off for myself twice a week. 😄
Ok...lets consider an Upper limb program for him, look into Saebo many hospitals physio teams offer Saebo equipment etc. My husband found these helpful.

That's all I can think of for the moment, but keep in mind you are under no obligation to care for your Dad, as other posts have said you must consider your life and your future. Xxxx