Looking for advice please…
My mum has PD and dementia. She broke her hip in January and has been immobile since. She is unable to communicate very well and she struggles to eat and drink.
I visited her every day in her nursing home - it is a very good home and they seem to care for her well.
Mum is quite poorly and is on end of life care - when she is lucid the only thing she wants is to go home. I am considering moving in with her to her bungalow, giving up work and caring for her myself. I have limited experience of this but would like to see her more content in her last weeks/months. I currently live with my husband and daughter (at Uni currently).
Mum is getting CHC funding. Who would I approach to discuss the possibility of taking her home? Has anyone done something similar?
Thanks for all and any advice
My recommendation is to seek specialist advice here … AGE UK springs to mind.
CHC / NHS Continuing Healthcare … FREE at the present moment.
Would said funding follow your mother if she moved back to her home ?
Possibly … POINTON case as precedent … main CHC thread … FOLLOW THE COLOUR :
POINTON CASE : CARE AT HOME
Caring at home … you to replace , I assume , specialist carers or … to care alongside them ?
( If replacing existing carers … logical question … why should CHC funding continue ? )
Funding your own life … Carers Allowance and ??? … practical consideration.
What will happen to the bungalow in the event of your mother’s demise … ESPECIALLY IF said CHC funding does NOT follow ?
And … to any other occupants at that time ???
End of life care … the NHS for this emotive subject :
End of life care - NHS
Just some initial thoughts … AGE UK are the experts in this field :
I strongly recommending bouncing this scenario off them.
Can I suggest you contact you local Hospice and ask their advice? Many have “hospice at home” schemes which may be able to support you.
Also, and this sounds dreadful, but do you really know how long this may be for. While it is exhausting to care for a loved one, it can be fulfilling short term, but longer term can be isolating, debilitating, harrowing. It isn’t just holding hands, it’s personal care, medication, lifting, laundry, worry and constant fights for support, help and funding.
Also, see if you can check it is her bungalow that she is thinking of. My mum often talks of going home, but when we ask her the address, or what it looks like she cannot describe it. “Home” seems to become a vague concept that stands for “i’m scared of what is happening to me and i will be safe at home -like running back to mum” also she may not fully understand where she is or why she is there. My mum did before the dementia set in but doesn’t anymore. She’s 96 and asked us to find a home for her 3 years ago. This last year she has deteriorated and often asks to go home, we just say “maybe next weekend” and that settles her enough. She docent realise "next weekend hasn’t come yet.
It’s sad, but we know she is safe, cared of, warm and fed, and we get to laugh with her, hold her hand and reminisce , while getting sleep, working and keeping finance coming in
Hope this helps a little
It’s not just the days, where you might be able to organise plenty of help from nurses and carers – note I say might!
It’s the nights! In the Home Mum has a team of people who are on that particular shift and on call. Could you manage constantly getting out of bed to either check on her or answer a call from her? Could you deal with night time bowel incontinence or distress or if she seems to be deteriorating? Who do you call? When will they come? Ambulance to hospital?
I know how you feel. I reluctantly asked my Mum to go into a Home because the days, even with the maximum care help, were wearing me to a frazzle and there was no way I could be ‘on duty’ all night too.
I compensated by spending the majority of every day with her in the Home. I felt that both of us needed me to do this, but it did layer exhaustion on top of weariness for me. It took me a long time to recover, after her death However I could chill in the evening and sleep at night, knowing that someone was looking after her. I wasn’t particularly thrilled with her particular Home so if you think your Mum’s place is good –that’s a massive plus.
If your Mum is on end of life care, then moving her might be detrimental to her? The effort involved and just maybe she mightn’t think of where she goes as ‘home’. What if she still asks to ‘go home’. How would you feel then?
I suggest that you tell her ‘kind lies’. When you are better, but not quite yet. Followed by I’m here with you and I’ll be here tomorrow. Then change the subject.
If the staff are kind and helpful, if you are with her as much as you can be, if you are certain she is warm, clean and comfortable, then it is possible that she is better off where she is. Probable that it is better for you and don’t forget that you are important too.
Also consider that when Mum says she ‘wants to go home’, what she means is she wants to go back to how things used to be. When she was fit and well, when she could cope and was in control. It mightn’t be a building she means at all.
I fully understand the desire to surround Mum with love, comfort and familiarity. But at what cost if you move her now? In the end, you are familiar, you are comfort and love, The place doesn’t matter.