When did you realise they were at the end?

[Orangebadger]

My mum has vascular dementia, lives with me and my family. 4 carers a day, 2 carers each visit. She pretty much just wants to sleep, they get her up in her chair and she's just not comfortable and wants to get back in bed. Her mobility is zero, she has to be hoisted. She's eating tiny amounts of food and refusing most water, maybe I manage to give her a small glass a day. She still talks but seems to choose not to very much now. She gets easily irritated with the carers and at times me ( which is new).

Her dementia and mobility have deteriorated massively over the last 6 months. Before this she was slowly mobile with a frame and her main problem was her memory.

I just feel like she has had enough, and I really don't blame her at all, it's awful to watch. I just think she's giving up. But what to do? At what point do we decide to let her stay in bed and sleep and eat very little ( she eats and drinks even less when in bed which is the main reason I like to get her up in the chair).

My mum in law went on like this for two and a half years. She was reduced to a person laying in bed, open sores as her skin was breaking down. No speech, no recognition of anyone. She would still open her mouth to accept food and drink so on and on she went. She didn’t lose weight either. In the end, we had a call to say her breathing had become laboured at 6pm shortly after she’d eaten a bowl of purée for tea. The care home called a doctor and after LOTS of shots from an end of life pack (with our blessing) she finally passed at midnight. She took ages to let go, it was so sad for her.
I’m so sorry for you, it’s a vile illness. The body keeps on going far longer than the mind.

Sounds like she is taking to her bed as my nan would have said.
If she is most comfortable in bed then that is where I would leave her at this stage. I presume you have power of attorney for health and welfare. Have you thought about if hospital admission would be appropriate in any circumstances or would comfort care at home be the limit in case of chest or urine infection? Has resuscitation appropriateness been discussed and recorded?
Best of luck it sounds as if you have done really well to keep her at home for so long. Four lots of carers calling must feel so intrusive

I'm sorry for your MIL, it's so horrible.

Yes mum is tough, at the end of last year start it this year mum has 3 x pneumonia, covid and norovirus! I am guessing this is what triggers her decline, but how she survived all of that I do not know.

Mum has lost a lot of weight over the last 6 months. And she's only accepting limited food. I just don't want her to suffer and I know she is unless she's sleeping.

You do it now - otherwise you just prolong the agony.

My late OH had Parkinsons and was eventually in a nursing home. He was confused, paranoid and living in fear. When he got pneumonia they wanted to blue light him to hospital for intravenous antibiotics. I said No Way.

Luckily I had Power of Attorney over his health and welfare and they had to listen to me. They provided an end-of-life pack and he was able to be released from his misery in peace.

My Mum was like this for her last month. You could see the decline in her for a while before that, probably a year, but the last month was like you describe. She just stopped wanting to eat or drink at all in the end.
At that point you will probably need end of life care from the district nurse and the GP.
I am so sorry OP.

Has the gp made a referral to palliative care services at all?

I'm so sorry to read this OP, sadly we do not have good end of life care in the NHS, it is down to you to make the best choices available to you.
Why we allow humans to suffer like this I will never understand, we give our pets better care and end of life 😢

This. Please ask the Gp to refer you

When palliative care took over with my dad it was such a difference, felt like a real relief (I hope no one finds that offensive). We didn't have to haul him around for the carers coming in, didn't need to worry if he ate. The team were available around the clock. It's so sad as it signals the end, but it really was a much more peaceful time for us. Good luck OP

Have you registered with your GP as a carer? When I did I was introduced to a number of helpful agencies. By far the most helpful was the hospice who were quite amazing, your GP can refer you and I would urge you to request this.
I’m so sorry that you’re experiencing this, it is so awful to see someone you love deteriorate. I really struggled to get help with my mum who had Lewey bodies dementia, she died in hospital and I’ve never forgiven myself but I think things have changed in that respect now. My dad was under the care of the hospice and he died in a hospital bed but in my home where he wanted to be.
You should be extremely proud of yourself so many people wash their hands of their elderly relatives. Sending you hugs and strength for the journey ahead. Xx

Oh definitely at this stage it is very important to consider what interventions are appropriate and this was something the hospice nurse discussed with us. Great point@Deanefan

It is a cruel disease isn't it? With my mum, we knew that 'the end was near' when she no longer roused and quite literally slept for 23 hours a day. Her weight plummeted and she was skin and bones...this was shocking to see, as she'd spent her entire adult life as a 'big lady' so being less than 7 stone was awful.

She stopped eating a couple of months before she died...with only the odd mouthful of something puréed being tolerated...but she generally spat it out without swallowing. She did have tiny sips of water though, which I guess kept her going as long as she did.

In the final 48 hours though, she didn't even have those sips and simply stopped breathing regularly... weird raspy breaths with huge gaps in between, the odd 'sweary shout' and 'chicken arms', which is an imminent signal that death is near. It was devastating... but we were reassured that she was not in any discomfort.

As others have said...the end was actually a relief for us. It had been several years of this horrible decline and 'losing' our mum hundreds of times over and over.

Massive hugs to you OP (and anyone else on this dementia journey...it's not one that I'd willingly take again 😢) xx

@Deanefan yes mum has a DNAR and her ceiling of care is oral treatment only, so no hospital. I had that conversation with her GP about 4 months ago. Mostly on the back of her last two hospital stays which which she found very traumatic and it really had a knock on negative impact which has remained with her.

@Mischance I am so sorry for the loss of your OH, Parkinson's disease is such a cruel disease. I am glad you managed to stop him going to A&E.

The irony of this is I am a nurse but my background is A&E all though not any more. So I have many clinical skills that have been useful and a good knowledge base for looking after mum, I have also seen too many patients like your OH @Mischance get blue lighted in and it breaks my heart.

But at this stage I have my gut feeling that we are at the end stage but it's so very different when it's your mum, it's much harder to assess this now as a nurse when it's mum. I needed to hear it from others who have been through this before.

@SirVixofVixHall thank you x

@WhoWants2Know mum was referred to palliative care about 2 years ago, but for another condition that was thought would progress rapidly and it never did. But I did speak to palliative care while mum was in hospital about 5 months ago, we had a long chat about her. She's on their books but not active. I think I will give them a call tomorrow to arrange a visit or a chat with them at least.

Yes my experience of palliative care through work has been really good, they really do make such a difference with that simple acceptance of the end which many other health care professionals struggle with.

@Lovepeaceunderstanding I'm glad you were able to have your dad with you. I still think dying in hospital is awful, I am lucky my father died in a lovely home. I know I want my mum to be here and she ha always wanted that too.

@SpringIntoChaos yes I can totally believe the relief, as guilty as I feel thinking that.

My grandmother also had vascular dementia. She had had a small bug and after that preferred to be

Sorry on phone. Preferred to be in bed. The nurses were amazing and she ended up sleeping away her last few days. I was there on the last day and my mother was there at the end and it was very peaceful.

So I spoke to the palliative care nurse today and they are going to come out to see mum.

Mum has eaten and drank a small amount at breakfasts the last 2 days but no further eating for the rest of the day.

She's just so uncomfortable, have an appointment with the GP today so will get some stronger pain medications prescribed for her. It's just so horrible to see her like this, I know she just wants to go.

You say you know she just wants to go but have you told her that it's OK for her to let go. I don't know if it really made a difference but we said to my Dad that it was time and we would look after mum. He died that night.

Yes I talked to her about it last night, about seeing dad and their dogs again.

I also told my dad right towards the end, he died the next day.