Dementia - phone call from GP about ceiling of care

[Candleabra]

My mum has very advanced dementia, she's not eating much now and is very frail. I managed to see her a couple of weeks ago and she looks terrible, she's so thin. She was considered to be at end of life earlier in the year, miraculously pulled through, but really never regained her strength.
The GP has been consulted today, and confirms no obvious underlying issues, and said it's probably dementia progression.
She asked what our views as a family are for future care, eg hospital admissions, treatment etc. We already agreed no heroic measures this year. But she won't tolerate any medical intervention now, even taking blood pressure. My every instinct says that any future treatment, even really minor, would be incredibly distressing for her, and the focus should be comfort. I'm struggling with the thought that this is the beginning of the end. Has anyone had a similar conversation with the doctor?

I didn't have the conversation, as the doctor rarely saw my mum or dad, who remained in physical good health, despite severe dementia - you are fortunate having a medical person who is walking this path with you. Do let yourself be guided by them. (Is your mum at home?)

I would also say trust your instinct to focus on comfort, not life lengthening treatment, and spend as much time as you can with her, just holding her hand, and taking little steps to keep her comfortable - vaseline for her lips for example, or sips of juice to keep her mouth moist. It is gruelling, but I found afterwards it was a reassurance to me that I did as much as I could for her. And in moments of lucidity, she was able to recognise me occasionally and manage a smile.

I'm coming to the conclusion that there is no easy way out of this world, for the person leaving, or for those who love them. It's so hard to know what to do - we get all of that support before giving birth, but there is so little support in helping someone to die. I did have "With the End in Mind: Dying, Death and Wisdom in an Age of Denial" by Kathryn Mannix recommended, but never found the emotional space to read it. It might help.

Like your mother, my Mum found any intervention distressing. (One of her remaining words was "No" so she used it liberally. She just wanted them to stop doing things to her - even things that would make her more comfy.)

I did have a conversation with a very supportive nurse who reassured me that it was not unkind to refuse further treatment - quite the opposite - and with that in mind, as I care for Dad, who also has dementia, I will not be pushing for many treatments for him.

Hope that helps.

Thanks so much for your reply. Mum's in a care home so she's with experienced carers. It's a lovely home. I know you're right, and i am pleased that the GP has brought this up so I can think about it, rather than it being an emergency situation.
I find it so frustrating that I can't visit. I was allowed to see her through a window a couple of weeks ago, but they're back in lockdown. I know it can't be helped, but if I could hold her hand I'd feel like I could be a support for her. But she doesn't recognise me anymore.

When my dgm was in a nursing home with dementia she reached the point where any medical intervention distressed her, the nurses couldn't even give her medicine to her covertly in food because she would spit it out. They discussed her situation with us and as a family we agreed that they need not doing anything other then keep her clean and comfortable. She could forgo her medicine if she didn't want it, we just didn't want her upset and distressed.

The staff were all wonderful, they looked after my dgm so well and made her last weeks as comfortable and dignified as possible. The last few weeks of her life she slept most of the time, but by that point the nurses were able to give her pain killing injections if they thought she would benefit from them and it didn't upset her. Also several times when I arrived for a visit I found a member of staff sat with her talking to her and holding her hand just so if she was aware of what was happening around her she would know that someone was there.

I do feel that for dementia sufferers that the focus really should be on keeping that happy, safe and calm. There isn't any point in forcing treatment on them to prolong life which distresses them. I think it is good that the GP has asked you to think what you would like to be done as it seems that they truely do have your mum's best interests at heart.

Yes - we had this exact conversation earlier this year with my dad GP. I understand how you feel as your mum like my dad has probably been slowly deteriorating over time and this conversation brings a new reality that is so tough to face. That being said the GP was very supportive and listened to my mums views on what she felt dad wanted and what she wanted and was able to bring extra support when needed which made it so much easier for us all especially dad. My thoughts are with you.

I'm sorry you are going through this OP. I found this article very helpful when I was dealing with something similar. It's not about dementia care but still applies. Hope it's useful to you. It's so hard to accept that someone is dying but it happens to us all and interventions aren't always the best option for the person.

psmag.com/.amp/social-justice/why-is-the-way-physicians-want-to-die-so-different-from-the-rest-of-us-61206

[quote Givemestrengthorgin]I'm sorry you are going through this OP. I found this article very helpful when I was dealing with something similar. It's not about dementia care but still applies. Hope it's useful to you. It's so hard to accept that someone is dying but it happens to us all and interventions aren't always the best option for the person.

psmag.com/.amp/social-justice/why-is-the-way-physicians-want-to-die-so-different-from-the-rest-of-us-61206[/quote]
That's a very interesting article. I did know the stats about CPR, unfortunately I've seen it performed first hand and it was horrific. And unsuccessful. I knew mum could never withstand that. I just hadn't realise before this awful journey with dementia that treatment could include diagnostic tests or IV fluids (I thought this was just basic stuff). I have so much respect for the medical teams and carers who deal with this every day. The compassion shown to my mum has been excellent.

I had a similar conversation with my dad's gp. He had dementia and was unable to walk anymore. He was in a carehome. A month in to first lockdown he became unwell. I absolutely believe that lockdown contributed to his condition. He was used to my daily visits. I saw him on video calls and the difference in him was noticeable. He just went down hill fast. His gp called me to discuss what we should do given that he was very frail. He had a chest infection. She felt that as he was on his second course of antibiotics and barely eating the situation wasn't looking good. The next step could be hospital but given the Covid situation how would I feel about him being there with no visitors. It was an awful decision to make. The go didn't push me either way just gave me information on likely outcomes. In the end I decided that if he was in the carehome at least he would be with staff he knew and comfortable in his lovely room. Better than hospital. Also he had never liked hospital visits even pre dementia. The gp said she agreed that it was the best decision for him. He was put into end of life care so was monitored by the nurse specialists. The care home were amazing. Because of the position of his room I was allowed in through a door which gave me access to his room without seeing anyone else. So I was able to be with him each day until the end, which was four days after speaking to the gp.

@Candleabra I felt the same re the interventions. My relative progressed from being perfectly healthy to dying in a month. When we were told she wasn't going to recover and they could only provide end of life care it was so hard to accept. I had to have a conversation with the doctor because I couldn't get my head around how they could stop giving her nutrition, even through a drip. Stopping to fulfil the most basic of human needs was so difficult to accept and I said to the doctor "well if you aren't going to give her any nutrition then of course she is going to die". I really had to trust the doctor, their judgement and decision making.
I think that ties in with how important being shown compassion to yourself and to your mum is. It's such a difficult time but a bit of compassion and genuine care does help and it also helps us to trust the doctors advice.

The doctor said this isn't the imminent end of life discussion yet (maybe this is why I'm struggling as that might be more clear cut). It's general decline and prognosis for the next few months and yes, it's the nutrition I can't get my head round. Again, before all this I thought tube feeding would be standard practice. What a terrible thing dementia is that is gradually stops the brain working for the most basic needs. I did a lot of reading about artificial nutrition so I understand why it's not appropriate. Mum can still eat, her swallowing doesn't appear compromised, but it's just the odd biscuit and cake. Anything proper, is refused.

Moving on to biscuits and cakes - easy to eat sweet things - is quite common. And at this stage of life, healthy eating rules can be relaxed - there's no point in enforcing an eating regime which is for long term benefit. When my father saw a nutritionist, she was advising him to go back to full fat milk, butter instead of marg, etc - advice that he wouldn't take from me.

In her final months my mother (who died from a long term illness not dementia) was being prescribed protein rich drinks which she hated. In retrospect, I wish we hadn't badgered her so much to eat.

I do feel that for dementia sufferers that the focus really should be on keeping that happy, safe and calm. There isn't any point in forcing treatment on them to prolong life which distresses them. Depends on the dementia sufferer in question. My father is steadfast in his aim to live as long as possible. While there are general principles in dealing with dementia sufferers, we mustn't forget that they are individuals.

My dad was always ate well until the last few months when he seemed to prefer eating with his hands, including mashed potatoes, fish in sauce! That then developed into a preference for sweet foods. Eating became quite baby like. He would sweep whatever was on his tray onto the floor. He ate less and less. He wasn't interested in food at all. About two weeks before he died he stopped eating. He had ice cream a couple of times. Given the time scale it was almost as if his body was shutting down. He didn't seem distressed with hunger or anything. Owing to lockdown I wasn't able to see him until a few days before he died. I wonder still whether I may have been able to tempt him with food. But thinking back to my mum dying (leukemia) she was the same at the end. It's so hard. Our natural instinct is to try and get them to eat and drink. But maybe it is the bodies natural way of coming to an end?

My grandpa died aged 99 in a wonderful carehome a long time ago now.
He basically ate chocolates and 2 glasses of sherry a day (they used to trundle a little gilt drinks trolley into the lounge pre-lunch and dinner) for the last few months of his life.
His face would light up at the sight of the trolley and he said 'Yes, PLEASE' to the offer of a chocolate way beyond when he could manage a conversation or fancy any other kind of food.

My DM has vascular dementia and Alzheimer's. She stopped taking medication and only eating the odd biscuit or sweet treat over two years ago. She's still alive and apart from her dementia nothing seems to have got any worse. She's terminal but not end of life. Does make me wonder how much of her 'essential' medication is actually needed but her GP insists on prescribing it.

Well she's eaten a bit more today! Still very much sweet based - she ate some jam on toast this morning. They're just offering everything they can. It's a rollercoaster of emotions. Her fluid intake is good though, which is something. As long as she's content and comfortable then that's the best I can hope for at the moment.

I just want to add that with my DGM despite her sleeping most of the time and being end of life, the care home did still try to feed her foods she liked such as custard and yoghurts and give her fluids when she was awake so they don't have to stop giving any nutrition or fluids.

My dad's appetite also disappeared. In hindsight we were probably trying to force him to eat ( not physically obviously) by buying him his favourite things and telling him he needed to keep his strength up, when actually he had simply had enough of life, and being pestered to eat was not what he wanted.
We had him home for 15 days, and it was really tough caring for him - a lot more so than we expected. The district nurses were amazing though, completely on his side. They taught us that it wasn't about what WE wanted, but what HE wanted. And if he didn't want to eat any more, that was his choice. So although it was hard to accept, that is what we had to do. And if I'm totally honest, it was the right decision for him ( if not for us...). I miss him so, so much but am so grateful that he was surrounded by our love when he passed on.

@Ifonlyiweretaller yes that's true and it's difficult to separate away from the mindset of "doing what's best for you". The reality is that mum hasn't had capacity or been able to look after herself for ages now, so even before she was in a care home we were looking after her to the extent that she had very little autonomy. It was necessary of course, so she was cared for and we'll looked after, but perhaps the eating is the last thing she has control over. I hate dementia so much. Poor mum.