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Struggling - Carers UK Forum

Struggling

Share information, support and advice on all aspects of caring.
Hi folks, my husband has been out of hospital for almost 4 weeks after 43 weeks. We are both over the moon that he is home, he seems so much more content and settled.
I am struggling with carers in the house and extended family who have never visited previously, our home doesn’t feel like our own anymore in any shape or form ☹️ My hubby I don’t think doesn’t think the same way as me about all this he had a significant stroke during surgery for an acute aortic dissection and there is significant cognitive impairment, still him in lots of ways and not in many other ways.
I am struggling to sleep, hubby is completely disabled now and has a bedroom in what was the dining room, we have a monitor and I am just hyper vigilant listening for him all the time, he had a really bad seizure early hours of yesterday morning and following a really bad infection last week has been put on a palliative care plan now, which I know is the right thing.
Just feeling overwhelmed/out of control and just don’t know where to go for help, ultimately I don’t believe anyone can help right now ☹️ I really don’t mean to sound selfish so I hope that’s not how this message is interpreted 😢
Hello

This is a useful guide to what is available https://www.nhs.uk/conditions/social-ca ... ort-guide/

This is a useful supplementary article on direct payments and how they work. https://www.nhs.uk/conditions/social-ca ... -benefits/

Another useful article https://www.nhs.uk/conditions/social-ca ... l-budgets/

I hope this is useful to you. Call your local council to request a needs assessment, this is the first step of the process. With direct payments, you can either have it paid out of a bank account or ask for a prepaid card to be sent to your address. Just be careful or they can terminate the agreement. Keep receipts.

Make two lists one list of questions to ask and one on his care needs. This is useful when they carry out the care assessment with you. Request a copy of the report afterwards as well. Inquire about skills etc. Find out as much as possible. Ask to see a copy of the complaints procedure as well.
leah_1902 wrote:
Tue Sep 24, 2019 9:58 pm
Hello

This is a useful guide to what is available https://www.nhs.uk/conditions/social-ca ... ort-guide/

This is a useful supplementary article on direct payments and how they work. https://www.nhs.uk/conditions/social-ca ... -benefits/

Another useful article https://www.nhs.uk/conditions/social-ca ... l-budgets/

I hope this is useful to you. Call your local council to request a needs assessment, this is the first step of the process. With direct payments, you can either have it paid out of a bank account or ask for a prepaid card to be sent to your address. Just be careful or they can terminate the agreement. Keep receipts.

Make two lists one list of questions to ask and one on his care needs. This is useful when they carry out the care assessment with you. Request a copy of the report afterwards as well. Inquire about skills etc. Find out as much as possible. Ask to see a copy of the complaints procedure as well.

Thanks Leah I will have a look at the info you suggest.
Jen_1905 wrote:
Tue Sep 24, 2019 10:06 pm
leah_1902 wrote:
Tue Sep 24, 2019 9:58 pm
Hello

This is a useful guide to what is available https://www.nhs.uk/conditions/social-ca ... ort-guide/

This is a useful supplementary article on direct payments and how they work. https://www.nhs.uk/conditions/social-ca ... -benefits/

Another useful article https://www.nhs.uk/conditions/social-ca ... l-budgets/

I hope this is useful to you. Call your local council to request a needs assessment, this is the first step of the process. With direct payments, you can either have it paid out of a bank account or ask for a prepaid card to be sent to your address. Just be careful or they can terminate the agreement. Keep receipts.

Make two lists one list of questions to ask and one on his care needs. This is useful when they carry out the care assessment with you. Request a copy of the report afterwards as well. Inquire about skills etc. Find out as much as possible. Ask to see a copy of the complaints procedure as well.

Thanks Leah I will have a look at the info you suggest.
Alternatively you could look at care homes. But again do ask questions and do research as well. This is a useful resource on UK care homes, contains reviews. https://www.carehome.co.uk
Hi Jen
It's very very common that the needs of carers are overlooked, especially in complex medical cases such as your husband's. It is only after a time that carers realise that the time and attention to the caree is actually not good for the carer.
So you have to look after yourself as well as looking after your hubby. For example when paid carers or relatives are there, you become strict that that time is your time for you. You go for a walk, or to the library, or meet a friend for coffee.. whatever you like that is not to do with caring and illness. Even half an hour can make a difference. This isn't being selfish or uncaring, it is being sensible and self preserving so you can continue to care in the difficult times ahead.
Carers are still allowed to say "no" or "not now" to relatives, and to their caree too. You are allowed to feel, to be sad, to be tired and to love, and to express all that. You dont need to be a saint - you are a human with needs too. Its just finding a balance that works.
Also it's about taking back a bit of control. Have a space in the house that is just yours, no medical equipment allowed, no Carers allowed. Make it home. Some use the garden if inside doesn't work.

You might find your local carers group has someone to talk to, to share the words that can't be said to hubby and to meet others in similar situations. You'll be surprised how many there are, and probably just around the corner. You need support as much as he needs care.
Kr
MrsA
Also, I don't think anyone could cope with listening for a monitor 24/7. That's just unachievable. You need some respite from that, either someone else to be there while you sleep or go out. Talk to his medical team about that -they probably didn't think about you, and are used to there being whole teams of people available to respond and cover shifts

Kr
MrsA
Jen, I am sorry. I am happy to just read if you need to vent in despair, or answer questions if I can. It's not the same - none of us has identical experiences - but my late husband had a brain tumour, with seizures, and then a stroke; he had to move downstairs with carers coming in four times a day after the stroke.

MrsAverage is absolutely right about you having to get out of the house somehow but it's hard, I know.
Does your husband have an electronic seizure alarm?
Jen_1905 wrote:
Tue Sep 24, 2019 10:06 pm
leah_1902 wrote:
Tue Sep 24, 2019 9:58 pm
Hello

This is a useful guide to what is available https://www.nhs.uk/conditions/social-ca ... ort-guide/

This is a useful supplementary article on direct payments and how they work. https://www.nhs.uk/conditions/social-ca ... -benefits/

Another useful article https://www.nhs.uk/conditions/social-ca ... l-budgets/

I hope this is useful to you. Call your local council to request a needs assessment, this is the first step of the process. With direct payments, you can either have it paid out of a bank account or ask for a prepaid card to be sent to your address. Just be careful or they can terminate the agreement. Keep receipts.

Make two lists one list of questions to ask and one on his care needs. This is useful when they carry out the care assessment with you. Request a copy of the report afterwards as well. Inquire about skills etc. Find out as much as possible. Ask to see a copy of the complaints procedure as well.

Thanks Leah I will have a look at the info you suggest.
How are you this week?