Struggling with mum being at end stage dementia

[aray]

Hi! This is my first post on this forum.
Mum has had dementia for ten years. She has fought it like a warrior! I am an occupational therapist and whilst I live in bristol and mum and dad a 3 hour journey away I have done my very best to support. Mum went into a nursing home 3 years ago when things eventually broke down at home. Dad had promised mum he would care for her and hid a lot until mum attacked him at night because she thought he was an intruder. Mum ended up in Leicester royal for 3 months and was bounced around various wards usually in the middle of the night when she had a heart attack I fought hard for her to go to a nursing home and eventually was placed in the only home close to my dad. Dad visited everyday but sadly 3 months later he was diagnosed with cancer and passed away suddenly. During last 3 years we have been making the best of things and taking mum out to cafes each time I visit has been Central to that. Outside of the home with me my sister neices and grandchildren she was much more orientated and even though the trips were eventful with mum and 3 young children to care we felt we still had mum. Then another resident pushed her over she went into hospital wee she was in bed for a week waiting tests unsuprisingly her mobility had deterrioratef on discharge and 3 days later she had an unwitnessed fall and broke her hip. She has not regained her mobility. For the last 3 months I have been fighting for her to have an assessment for an arm chair with pressure relief and some active pressure management. Sadly the innevitable has happened and she now has a pressure sore. She is no longer transferring out of bed and we can no longer take her out on our trips. I am really struggling with this. I keep crying and got sent home from work yesterday. I have seen a gp and they have directed me to Cruse .
I think as an occupational therapist I know too much .. the longer mum stays in bed the less likely it is that she will be able to transfer out but there are lots of risks about being cared for in bed, her positioning is not great and she is eating and drinking in bed. I have bought heel protector boots to manage risks of sores on her heels and help to prevent foot drop if a chair assessment does eventually happen. I have thought about just buying a chair but insitu slings are required as well and I don't think I can organise that as a relative. I don't think it is possible for mum to move to a new home now and I haven't done this previously due to concern about how this will affect her. It would be lovely to hear from people with similar experiences. Thank you

 

[karaokePete]

Hello @aray, you are welcome here and I hope members with experience of your situation will be along later to give their advice.

 

[Deb57]

Hello aray. Your situation sounds really difficult. I agree that your training makes it all the more tricky as you know what should be happening. The appearance of pressure sores are a sign that the Home is not responding to your Mums needs. My husband has been in bed since Christmas but was quickly put on an airwave mattress and is turned every 2 hours day and night.
Have you spoken to the manager to express your concerns? If your mum has a social worker they might be able to help. You can request a review of her care if there is a significant change, where an assessment should be done to check that the care she receives is adequate and appropriate.
I do hope her care improves. I know how helpless you must feel, as the dementia is unstoppable, but I’m sure your mum values your visits.
Keep posting here, it’s a great source of support. ❤️

 

[la lucia]

I have thought about just buying a chair but insitu slings are required as well and I don't think I can organise that as a relative. I don't think it is possible for mum to move to a new home now and I haven't done this previously due to concern about how this will affect her. It would be lovely to hear from people with similar experiences. Thank you

Hi I feel for you caught between what you know and what's happening. I fought soooo hard to keep my mum mobile but it REALLY meant fighting on all levels and I was looking after her at home myself. I don't know if I could have fought a care home too.

The first thing is stereotypes of elderly people and "frailness" and the second thing is staffing levels and convenience. My mum got sent home from hospital having lost mobility with a discharge notice of double handed care visits and moving and handling regulations.

Long story short we got her mobile again by breaking a few rules, and me insisting on everyone repeating exactly the same words for instructions and using the same movements.

In a care home you can't do that but you CAN request that she is hoisted to a suitable chair AND given exercises. And to be honest I'm shocked the staff aren't trying this. They sound like they're sacrificing mobility for convenience. They must have a hoist surely and they should have a suitable chair and pressure cushions. What do they say?

My mum had a major stroke, broke her hip, pneumonia twice + advanced mixed dementia. She was 98 and she was walking 30 metres and managing garden steps all with a frame and handling belt up until a week before she died.

Of course there may be other reasons why your mum is not being got out of bed but it's definitely worth discussing all this with them. Cushions, slings and so on can come from social services and your mum should have been assessed for all this before she left hospital. I hope you can get the home on side.

 

[Moose1966]

Hi! This is my first post on this forum.
Mum has had dementia for ten years. She has fought it like a warrior! I am an occupational therapist and whilst I live in bristol and mum and dad a 3 hour journey away I have done my very best to support. Mum went into a nursing home 3 years ago when things eventually broke down at home. Dad had promised mum he would care for her and hid a lot until mum attacked him at night because she thought he was an intruder. Mum ended up in Leicester royal for 3 months and was bounced around various wards usually in the middle of the night when she had a heart attack I fought hard for her to go to a nursing home and eventually was placed in the only home close to my dad. Dad visited everyday but sadly 3 months later he was diagnosed with cancer and passed away suddenly. During last 3 years we have been making the best of things and taking mum out to cafes each time I visit has been Central to that. Outside of the home with me my sister neices and grandchildren she was much more orientated and even though the trips were eventful with mum and 3 young children to care we felt we still had mum. Then another resident pushed her over she went into hospital wee she was in bed for a week waiting tests unsuprisingly her mobility had deterrioratef on discharge and 3 days later she had an unwitnessed fall and broke her hip. She has not regained her mobility. For the last 3 months I have been fighting for her to have an assessment for an arm chair with pressure relief and some active pressure management. Sadly the innevitable has happened and she now has a pressure sore. She is no longer transferring out of bed and we can no longer take her out on our trips. I am really struggling with this. I keep crying and got sent home from work yesterday. I have seen a gp and they have directed me to Cruse .
I think as an occupational therapist I know too much .. the longer mum stays in bed the less likely it is that she will be able to transfer out but there are lots of risks about being cared for in bed, her positioning is not great and she is eating and drinking in bed. I have bought heel protector boots to manage risks of sores on her heels and help to prevent foot drop if a chair assessment does eventually happen. I have thought about just buying a chair but insitu slings are required as well and I don't think I can organise that as a relative. I don't think it is possible for mum to move to a new home now and I haven't done this previously due to concern about how this will affect her. It would be lovely to hear from people with similar experiences. Thank you

My mum is 86 totally bed bound since December, the care home did well but decided along with palliative care team that she needed NH so I managed to find a suitable room and she was moved within 10 days as they said EOL was in place . She coped with the move amazingly , she’s not improved as her legs have contracted completely under her so unable to sit up . But she is nursed , turned , fed , bathed and all care done in fabulous airwave bed and is comfy . She’s had a rally this week and been awake during visits although eating very little and talking rubbish at least awake and has smiled . I was very scared to move her but for us it worked . Good luck . X