Hello i havnt posted for a while but things have really changed. I was offeredc2 weeks respite for hubby who has dementia with lewy bodies so visited a few homes and he went i wasnt totally happy him going but so tired and thought only 2 weeks. He was in 8 days when he developed a temperature and admitted to hospital where Sepsis was diagnosed due to either bladder or chest infection. He became very ill has delirium now too and unable to walk. The sent him back to the care home they said it will give him the best chance with physio. No physio was set up by hospital so ive emailed gp who say theyve done a referral. Im not happy with care home he was walking upstairs before he went away albeit slowly, i took his meds in but left ventolin in his room as he was able to use it but now cant but they havnt checked on that. As far as i know all other meds are given. Hes deteriorated so much they use a hoist to be able to take him to toilet if he says but i think mostly left. If i have him home my daughter says i wont manage but i could have his bed brought downstairs, jow would i manage for toileting and getting him into chair has anyone else got experience of this please. I think carers will visit 4 times a day. Am i.making life worse for him as there is company at the home
My mum could walk, albeit slowly with a Zimmer frame. After sepsis she could never walk again. You have to look at what he NEEDS not what you want, and sadly that sounds like a team of people.
If you don’t like the way the home are managing his care, talk to the Care Quality Commission, who regulate care home standards. Has he had an NHS Continuing Healthcare Assessment?
If granted, this might provide free care at home.
Hi @Jackie66 caring for him when he was mobile left you exhausted and now his needs have increased.
You could ask for an OT assessment for him so that you have aids to support you looking after him at home.
However, in all honesty it does sound as if his needs are now too great for one person and it’s time for him to have round the clock care from a team of paid carers. This would enable you to spend time with him without having to provide hands on care.
Hi @Jackie66 I’m afraid I’m with your daughter on this. I’ve worked with carers who were desperate to get their loved ones home and it all went horribly wrong very quickly. You might cope for a short time, but you’d be exhausted within a week. I understand how you feel, but I think @Melly1 was right when she said:
It does seem to be the best option out of a poor set of choices.
When mum was in her nursing home, I became friends with a wife of another resident.
Tragically he had something drastically wrong with him needing nursing care although well under pension age. She spent as much time as possible with him, hours every day.
Are the home making you welcome when you visit? Can you have meals together?
Can you socialise with other patient’s partners?
Have you talked to the Care Manager how you feel, and asked how they can help?
@Jackie66….hi, I’ve been through something similar. My husband spent 7 months in hospital and physio rehab. When he came home he could barely move. We had double carers 4 times a day and it was extremely tough. He ended up moving into a care home and is now in assisted living. Melly is right in saying your husband needs a team of people to care for him and it’s way too much for you to do from home. Hope you can speak to the care home and get something sorted out.
Thanks for your reply, he is in the care home where he was put for the 2 week respite i only budgeted for the 2 weeks so what happens if after the assessment of our finances we dont have enough to leave him in the home that is another concern. He hasnt had an occupational assessment yet as far as im aware.
Hello how would i apply for the continuing needs assessment i havnt heard of this. He is under a gp nearer to the home at the moment as ours wouldnt go out to him when ill, i dont know where i am. I would like.him in a place nearer to me really. Thankyou for replying
Thankyou for your advice i feel guilty i was the one who needed the rest i was so close to not sending him to the respite he was nowhere like he is now. I had hoped the physiotherapists would have been arranged but they werent
@Jackie66
This is very much my own personal thought. You can’t be 100% certain that the decline in your husband’s health wouldn’t have happened regardless. So please try to kick the guilt monster away ( I know it isn’t easy). His needs have definitely increased, so will be extremely difficult for care at home.
I do have a little understanding of this situation. More than once I was very close to having my late husband home from the nursing home. Realty set in and had to think with my head not heart
@Jackie66 you need to fight for him to get Continuing Health Care, if he is immobile etc it is not just social care. Dementia UK or Age UK can help in giving advice.
Here is a link
NHS continuing healthcare - Social care and support guide - NHS
He now has different needs so you should not be covering this level of care.
It will be hard, but say you can’t have him home like this. Your daughter is right, it will be too much for you. Then she will be worrying about him and you.
@Jackie66….can you speak to adult social services, they should be able to help you. Phil had a social worker who handled this. I believe if you have under £23k in savings care costs are funded by the local authorities.
We’re Social Services involved in the respite placement, or are you paying yourselves?
Has he had a Needs Assessment done by SS, and you, a Carers Assessment.
Once your joint assets fall below about £46,000 then Social Services may contribute towards the cost. That’s just a brief introduction to a big subject!
@Sue24 I think with Continuing Health Care it is not means tested, as it is funded by the NHS. There are criteria to meet and the NHS doesn’t want to fund it but if you can get support to fight it and not have to pay for the care. If you cannot get it then Sue is right it depends on savings etc. Good luck
@Jackie66 Hello, sending a few big hugs over to you
Please don’t feel guilty or try to have your husband back at home - for his safety and yours, in my opinion his needs have overtaken your ability to care for him, even with carers during the day, the night time would be the most risky dangerous time for you both
Not just for his physical needs but also due to the Lewy body dementia - this is my personal opinion based on what I know of dementia and personal experience with my Dad’s vascular dementia (which I think is a much milder case of dementia compared to Lewy Body)
I just checked back to your profile summary where you shared more about your own health issues about depression, and that you’re separated from your 79 yr old husband but took on caring for him…at that time (May 2024) you were about to connect with the memory clinic…so for over a year you’ve been dealing with your husbands deteriorating dementia diagnosis, right? Sending extra hugs with how much you must have been dealing with, given how isolated you said you were/are in your profile.
I’m imagining that the ‘complicated grief’ you mentioned is also weighing you down now. Lewy body dementia can be extremely difficult to manage if he’s been having hallucinations and other delirium issues.
I’m VERY VERY glad that you’re reaching out to connect more with us now. @Tiredanne has shared the key info about NHS Continuing healthcare which I’d urge you to look at… Husband very unwell - #11 by Tiredanne
But I know you said you’re not great with using the website so you could call Carers UK helpline and get more help over the phone:
For information and signposting, our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays).
If you have a more complex query or would like more detailed guidance, we suggest you contact our email Helpline (advice@carersuk.org), as we’ll be able to provide more information.
You can also find out about our online support sessions here: Online meetups | Carers UK
If you have a general enquiry, please email info@carersuk.org
If you need somebody to talk to or a listening ear, Samaritans is also available 24 hours a day, 365 days a year on 116 123 or you can email jo@samaritans.org
As I said, I know you’re feeling guilty…I think there’s a lot of emotions you may be feeling given everything you’ve been going through…and you’re VERY justified feeling the way you feel..
AND your husband is in the best place for his safety, and needs both physically and mentally..
Time to take care of yourself now. I hope the Carers UK helpline can help you navigate NHS continuing care
I will come back later but just want to check can the social worker organise this or do i do it myself please?
From the link that @Tiredanne shared:
Initial assessment for NHS continuing healthcare
The initial checklist assessment can be completed by a nurse, doctor, other healthcare professional or social worker. You should be told that you’re being assessed and what the assessment involves.
I would recommend asking your GP that may be the faster route unless you have the social worker already involved. I’d think the GP and you could work together to complete the checklist
I don’t have experience of this - perhaps @Charlesh47 or @bowlingbun could advise
My mum’s GP was useless. In the end I printed off the relevant pages of the CHC rules, sent them to the Gp and told him to get on with it as mum was dying.
His application was then rejected as he hadn’t done the form properly.
I told CHC it didn’t mean mum wasn’t eligible, but that the GP needed further training!
Finally it was granted, just undefeated 2 days before mum died.
I still couldn’t claim it as they demanded evidence of probate which we hadn’t needed to apply for.
Then useless brother, joine executor was horrible to me, at which stage I gave up.
Better that than a complete breakdown.
Thankyou the social worker arranged the care home yes, ive had a letter today following financial check and the costs are going to be part paid for by them
So sorry to hear that, we have nobody do we apart from the lovely people on this site. I have no computer or printer so dont know if i can get forms sent to me. My gp pretty useless to he wouldnt go out to John when his temperature escalating. Im really not happy with care hes had from gp surgery they were even sending emails to somewhere other than memory clinic