Hi, does anyone have any experience in the UK of end of life/paliative care for people with dementia? The hospices only seem to look after those with illnesses such as cancer or motor neurone disease....I would be interested if anyone has heard of this type of care for those with advanced stage dementia. My mum is close to end of life but the local hospice doesn't cater for dementia sufferers. My feeling is that her life would be gentler, and less medicated and have more dignity if she was in a hospice. Thanks.
palliative care
- Thread starter happisoo
- Start date
My Nan died on Thursday and was in the advanced stages and had not eaten / drank since Monday morning. On Tuesday we were called to come in as they had got her out of bed and could not wake her. From then to Thursday we were visited by the district nurses who gave my Nan great palliative care. They gave her drugs through a syringe driver for drying up fluids and a sedative as she was very unsettled. She was in a residential home and had been there for 4 years. I believe that she was better with the drugs at the end of life as without them she would not have slipped away comfortably. Unfortunately the disease is so cruel that you have to make the most of what you have. Not sure a hospice would have been the best option as people like my Nan needed medication. Hope this helps.
Hiya Happisoo,
So sorry that you are having to ask these questions. In my experience I know of some people who have had dementia being in a hospice. What I don't know is whether they had other illnesses which got them in, if you see what I mean. It does sound strange that such a service wouldn't be extended to people with dementia! Where is your mum now? What type are you both receiving? If your mum is at home, then maybe hospice at home might be an option? Failing that, if you give a rough idea of your mum's location that is more detailed than North Wales, perhaps someone on here might be able to help.
My mother was in a care home which provided end of life care and a hospice couldn't have provided better care than she had there. Anything she, and all of the family, needed was provided and the staff were lovely and supportive.
I hope you can find a place for your mum which meets what you want for her. Any more info you can give and we'll try and help in any way we can.
Fiona
So sorry that you are having to ask these questions. In my experience I know of some people who have had dementia being in a hospice. What I don't know is whether they had other illnesses which got them in, if you see what I mean. It does sound strange that such a service wouldn't be extended to people with dementia! Where is your mum now? What type are you both receiving? If your mum is at home, then maybe hospice at home might be an option? Failing that, if you give a rough idea of your mum's location that is more detailed than North Wales, perhaps someone on here might be able to help.
My mother was in a care home which provided end of life care and a hospice couldn't have provided better care than she had there. Anything she, and all of the family, needed was provided and the staff were lovely and supportive.
I hope you can find a place for your mum which meets what you want for her. Any more info you can give and we'll try and help in any way we can.
Fiona
Palliative care can take place at home, in a carehome and in a hospice. I am very sorry to learn about your mum. Her GP should take the lead. I had to insist quite loudly and often for my mum: to her GP and to her carehome manager. Do not be afraid to speak up loud and clear.
Hello happisoo,
I'm from Wales too.
I'm so sorry to hear about your Mum.
My Dad was in a Nursing home, but the palliative care was still delivered by 3 district nurses who visited daily.
My experience is exactly as sarahmitch72.
The main criteria was keeping Dad calm, pain-free and comfortable.
I would talk to the Gp and care home manager to see what options are available in your area.
I'm from Wales too.
I'm so sorry to hear about your Mum.
My Dad was in a Nursing home, but the palliative care was still delivered by 3 district nurses who visited daily.
My experience is exactly as sarahmitch72.
The main criteria was keeping Dad calm, pain-free and comfortable.
I would talk to the Gp and care home manager to see what options are available in your area.
Geum 123, Butter, sarahmitch72 and FifiMo - thank you so much for your responses, knowledge and insight. Mum is currently in the general hospital (Bangor, north Wales) as she has stopped taking fluids and they are trying to inject them. (She pulls out the drip). I am unsure as to what stage she will need palliative care but am taking it day by day. The hospital are hoping she will recover enough to go back to the assessment hospital and from there we should be able to work out which nursing home she then goes to! Phew! I feel too much moving around and am tentatively praying she will be taken care of in the (quite nice) hospital she is currently in to save all the complicated moves.....
Your responses are all very helpful. I hadnt thought of any of them and didnt realise palliative care has outreach capabilities, so am feeling rather inspired by your help! Will check with (rather hopeless ) GP but nurses are helpful. Hugs xx
Your responses are all very helpful. I hadnt thought of any of them and didnt realise palliative care has outreach capabilities, so am feeling rather inspired by your help! Will check with (rather hopeless ) GP but nurses are helpful. Hugs xx
Am really sorry to hear about your nan.
And yes - medication is probably necessary for comfort; Thanks xx
