Carer for the third time

@Penny it’s very disappointing that there is no therapy over weekends. Hopefully once he had speech and physio programs in place he’ll be able to work on the independently at weekends.

It’s understandable that he feels emotional, it’s such a huge thing that has happened to him (and to you.)

It’s good that he’s eating well. Not surprising he isn’t sleeping well - hospitals are noisy places and he isn’t doing enough to wear himself out at the moment.

Thank you for your Christmas wishes. I hope you are able to to enjoy a few treats this Christmas too.

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@Penny……that’s great news that he’s been moved to the rehab stroke unit. Hopefully next week they can start working with him. We noticed with my dad that he was a lot more emotional after his stroke.
It’s bound to have drained you having gone through all the shock of this. Try and take some time to look after yourself if you can too. Merry Xmas to you too.

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It’s now nearly 8 weeks since the stroke and he is still in Rehab hospital.

I broke down today when I asked for a chat with the Sister on duty. I just can’t cope with my poor husband looking so skinny, miserable and crying. I know it’s a side effect of stroke but it is so hard to witness and not be able to make things better. She was very kind. I then went in to see my husband and suggested he think again about having some mild anti depressants. He has agreed and the Doctor said he will prescribe later this week.

I have OT coming out tomorrow to look at our house and see what we need. Physios are helping him so he is no longer hoisted but transferred chair/bed via a kind of sack barrow which enables him to stand upright. His speech is very poor the last week or so.

I took him in homemade soup today and he enjoyed it but I almost have to force him to eat and his drinking was so poor they put him back on a drip as they were concerned about his kidneys. His sense of taste is all messed up - another side effect. He says everything tastes horrible.

Looks like it’s still going to be a very long journey for us and some days I question whether I have the strength to do my best. I know nothing about moving, lifting, bathing, but presumably they will teach me all that. Oh, he has also been told he has Type 2 diabetes now so I need to learn about that too. Night night :sleeping:

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Oh @Penny so much for you both to deal with. Sending (((hugs)))

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@Penny
I’m not surprised you broke down. A very difficult and sad time for you.
I really feel for you
Sending (((hugs)))

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Penny, please consider having an updated Carers Assessment and asking for private ongoing counselling to support you. I found it invaluable when juggling mum’s needs and son’s needs.
I know it’s not that you don’t want to care for husband AND daughter, but is it realistic?
The hospital will just want their bed back but so far they haven’t even started to train you how to care for your husband.

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@Penny….so sorry to hear this, it must be so tough on you both.

@Penny They rarely offer training - you have to ask for it. Probably more than once. Just another hassle but you need this - and you may well need hoist or transfer training (I think what you described was a rotunda - a platform with a central pylon, like an enlarged top - with handles for your husband to hold on to. They can be difficult for one person to manage the weight of the rotunda and the person being moved, so training is essential and trying it out before you get stuck with one at home that you then find you can’t use.

Ask lots of questions about training, about the equipment, and about how it will work in your house. Don’t let them get away with vague answers - we don’t want all three of you needing care.

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The transferring gadget was delivered but will not work on our carpet. It’s called a Ross. That’s going back and we are getting a Sara. That is a big plastic gadget in turquoise and purple.

I am actually dreading all this. I get sciatica every now and then and once I had it for nearly 6 months. I don’t feel i am up to this at 71. I seem not to have any choice. On good days I want my husband home and together we can work on his affected leg and arm and also his speech.

When I’m having a bad day I worry that it’s going to be too much. He is very emotional since the Stroke and often cries. He seems to think that once he comes home he will be fine but I am not so sure.

I imagine taking him out in the car for a drive on nice days but I don’t even know if I could move him or if our car is suitable and whether it will take a wheelchair.

I am aware that this probably doesn’t sound very kind or caring but I can only share my thoughts on here. I have plenty of friends but they seem to think getting a hospital bed in the lounge and a load of other gear will solve everything, so I don’t say much. One neighbour came round, heard about all the gear we were getting and said “so this is your life from now on.” I couldn’t even reply.

I know people mean well but so many people around here have family members who have had different types of strokes, have a week or 10 days in hospital and are back to long walks, running, keep fit etc. my husband’s is the worst type to recover from. :disappointed_relieved:. Nearly 10 weeks in and he is just learning to stand with two physios holding him.

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Penny, I totally share your concerns, and it sound like no one is listening to you?
Friends are not being helpful, not seeing the reality and completely ignoring the fact that you were already exhausted because you have been a carer for your daughter for many, many years!!!
Insist on a carers assessment, the hospital should take you into consideration. The best thing would be for your husband to move to a local home for “rehab” for the foreseeable future. How much does he weigh? And you? I’m afraid it is all going to go “pear shaped” (other terms available that the mods would not like) within hours. Can you even negotiate your home with a wheelchair? Has anyone bothered to check? How can you nurse someone with sciatica? Has he has a Continuing Healthcare Assessment?

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@Penny
I too understand well meaning people but being very unhelpful. When my late husband had the major stroke after several TIAs we weren’t aware of, many said he will be fine in no time. Sadly in our case he didn’t recover . Admittedly I started seeing small signs of dementia. I could have been very rude to these people including my sister. I wasn’t off course. Well meaning maybe but giving false hope isn’t kind

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@Penny I’m not surprised you are concerned about coping. Even with a care package in place he is going to require a lot of hands on care.

How many staff are delivering his personal care and helping him with transfers at the moment.

It will be harder to give him emotional support if you are tired or in pain yourself.

Have they talked to you about how much recovery they expect him to make in the short and longer term?

Perhaps you should be pushing for a rehab placement for him first, to see how much further improvement he is able to make and exploring the options that are best for you both after a period of further rehab?

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He is in a Stroke Rehab unit now Melly. Been there over 6 weeks after 3 in a large hospital. I have been told we can have carers in for 6 weeks but can’t remember how many times a day. Same with therapy.

Bb they have been out to our house, measured up and say he will get a standard wheelchair and a ramp for front door. They keep telling me not to get shower put in instead of bath or get a stairlift as his needs may change. We are doubtful whether we can even have a stairlift as one side of stairs is wooden rails and the other is not a solid wall but I think a stud wall. Also if it went on that wall, immediately at the top side is a bedroom door. I just live in hope that he will walk.

Pet …. Thanks for your kind words.

Penny, have you tried a wheelchair of the recommended size?
Then tried it again with someone the same size as your husband sat in it?
If he can’t stand by himself and needs to go upstairs to use the facilities, what are they suggesting?

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Thanks Bb. Haven’t tried a wheelchair in our house yet but they brought out a wheeled commode and that seemed OK.

Luckily our bathroom is downstairs but is small. He won’t be able to shower as there is no way he can get in the bath. OT says it will have to be strip washes until we see how much he progresses.

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Mum was very disabled, but still enjoyed her daily bath thanks to an Archimedes Bath lift, provided by the OT. It was very simple to use.

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OT arranged for one of those bath lift/chair for Mum and Dad found it such a relief when trying to bath her. Eventually she had to have an electric hoist which ran along the ceiling from the bedroom into the bathroom and she’d be suspended in a sling. Dad used to refer to it as “making the tea” as he felt she was being ‘dunked’ into the bath like a tea bag into a mug. He also made fun of raising her out of the water and leaving her for a minute “to drain” !! He teased her so much!

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