Don't lose hope

Continuing the discussion from Caring for loved one at home:

Hello Paula

Sorry to hear that you have had a rough journey so far.

My husband had a massive hemorrhagic stroke on 5th April 2023 which has left him paralysed down is left side. Whilst in hospital for the first six weeks Terry contracted Covid, but fortunately not too badly. Those weeks were a real roller coaster in that you didn’t know what to expect each time you visited, whether it be the feeding tube coming out of his nose or a chest infection. Unfortunately Terry was deemed as being unsuitable for physio as he lacked balance and could not co-operate.

From the hospital Terry was moved to a nursing home until we worked out how we could get him home. An Occupational Therapist visited our home, but as we needed extensive work carried out to our bungalow to enable this, we funded it ourselves (although I believe if we had not been in a hurry, we could have applied for a wet room, ramp and widening of doors). We did however quality for hospital bed, manual hoist, shower chair and hoist slings. We did opt for an electric hoist to enable me to hoist Terry should I need to. It has been invaluable.

A care plan was put in place for 2 x carers to visit 4 x daily. Our contribution to this care was sorted out and everything put in place for his return on 13th November 2023.

As you can imagine Terry’s homecoming was very exciting. We had banners, balloons etc and lots of cake.

The last six months have been very challenging with many ups and downs. Be prepared to be happy one minute and sad the next. Fortunately Terry (after being a pessimist all his life) has now become an optimist. There are aids for incontinence, especially night bags so if this is a symptom Kev has be sure to ask as it was a few months before I discovered these.

As regards of being written off by phisio. Terry has been having private physiotherapy which is wonderful. They treat the brain to (hopefully) use new channels to get his paralysed arm and leg to work again. A few weeks ago he started to be able to lift his left knee to command, It was quite a moment.

I am sorry I have gone on a bit, but I hope it is of some help.

Best wishes

Jean

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Hi @Jean1 welcome to our merry band of stroke survivors and carers :people_hugging:
Your insight to what can be expected will be invaluable to many carers on here for their loved ones, so you need never apologies for going on a bit. This kind of information can never be too much. :smile:

I’m sorry to hear you and your husband are going through this also. I hope he continues to make good progress. There are members on here who were told they would never even walk again, and yet here they all are proving their doctors wrong. I sincerely hope your husband is another one of them :wink:

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Hello Jean,

Firstly I wish you and Terry all the best, and well done for getting this far. It does not sound easy, for 1 second. Secondly, you say Terry is now an optimist ! how interesting, it sounds like we change mode through necessity… we do what’s needed to overcome our setbacks.

“Treat the brain to use new channels…” intriguing, and hopeful. I would love to know more, and you seem to have a good feeling about this, so long may it continue,

Best wishes, well done, ciao, Roland

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Hi Jean

Thankyou for replying. I can relate so much to the things you mentioned including your husband being a pessimist! Its so much like kev. At the moment he is having problems with aspiration. They are not sure if this is from eating and drinking or some other reason so he has had another video scan yesterday to see if there have been any changes with his swallowing. Should get the results today but even if thats ok he is not eating enough to keep him going and he has lost quite a lot of weight in the 10 weeks since his stroke. It looks like he is going to have a peg tube fitted. He mental capacity was tested a few days ago. He can understand basic instructions and information at the time but has trouble processing anything more or retaining information so they say he hasn’t got the capacity to make important decisions about his care like whether or not to have a peg tube so it will be down to doctors, peg team, myself etc to decide. He has been going through so many emotions understandbly. Anger, frustration and now tears. It kills me to see him so upset but I keep trying to encourage him like telling him how much he has improved since he had the stroke and he will continue to improve. He just needs to keep going and working with physio etc. We have everything in place at home in regards to the bed, a hoist etc. We are in the middle of a disabled facilities grant to get work done. This includes the widening of doors, installing ramp, wetroom and they have been getting quotes for a ceiling track hoist. The biggest problem seems to be getting the carers in place as like your husband he will need 2 carers four times a day. I am worried about kevs mental state if he needs to go to a care home temporarily as he just wants to come home. Even though I tell him its only for a short time I think he thinks its forever due to his problems retaining information. Hopefully they can find some carers as soon as possible. I have been dreaming of the homecoming with the banners etc :joy:. I know its going to be a lot of hard work when he comes home but I think he will improve more here. Its time for visiting now so I will see what happens today. Its like you say I never know what to expect from one day to the next. Thankyou again for replying. I really appreciate it.

Paula

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Dear Paula

After a couple of weeks in hospital being fed via the nose I was taken into a side room with a doctor, nurse and social worker. The doctor suggested that if things do d not change perhaps an option might be a peg. Although Terry had lost weight I asked if we could wait a little while longer. At this time he was completely out of it so was unable to decide for himself.

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Hi @Jean1 Thank you so much for sharing, yes highs and lows there are many but so brilliant about the achievements amazing here’s to not losing hope. Sending Best wishes to you both

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Hello Paula,
The right care package is essential. Make sure your council get you a social worker so they can go through options with you.
My council and SW were great and we had everything in place for when I came home.
Physio is important for development physically and mentally, I assure you.
Remember, it’s tiring on you too, physically and mentally, not to mention emotionally. My wife was where you are now, but you need professional help that’s what we pay our taxes for. Start with your council, they should be able to advise you.
You could try PALS in the hospital and speak to the ward manager about his treatment, he’s in their care after all.
It’s a lot on you. So make sure you know all options. You don’t want it all on you without proper support.
There will be light at the end of the tunnel. We found the hospital chaplaincy team helpful as a shoulder to cry on and just unload on.
Wishing you both all the best for positive recovery.

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I’ll second that - there was very little organised discussion for Lea about support for her when I had my stroke. She found a local group who helped.

She now has several hobbies that take her out of the house

:slight_smile:

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Today, nine months post stroke, I needed a self boost after a near fall on Sunday, stepping out the front door. I did get out the door today, successfully, with care.

I remembered some Winston Churchill;

“Never, never, never give up.”

“If you’re going through hell, keep going.”

“Attitude is a little thing that makes a big difference.”

The last is a biggy for me. We didn’t anticipate our strokes, we were not prepared or trained in how to react. No one gets the bumpy journey unless you’re on it, the frustrations, seeing your wife/husband/partner/parent/sibling/child struggle to cope with your helplessness.
At times, it hurts as a husband to see my wife physically struggle with the stuff I did with a breeze. To be mentally and physically behind, for now, that is my head everyday when I was Mr “let’s get on”.
Being a stroke warrior is a battle big or small everyday. We don’t know how our body will be, nothing is really predictable. We stick to the script / processes and keep moving, positively, emotionally, physically, mentally, sometimes big steps other times small ones.
I’m happy to be able to share this with other warriors who will say “I know what you’re going through”.
Keep smiling everyone :grinning:

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