Advanced dementia and forgetting how to eat

[harriethoyle]

My DF has had dementia for around 9 years now and been in a care home for 6. He always had a very good appetite but in the last week it has fallen off a cliff and he’s only eaten three meals. I’ve made up a snack box of high calorie tempting snacks and staff are trying little and often.

The district nurse has been out and says basically he’s beginning to forget how to eat. I know that’s a natural progression of his dementia but I’m finding it so hard. It feels like waiting for an axe to fall.

For those who’ve been through this a) did you find any strategies for getting nutrients into the patient and b) how long was it between this stage and their death?

I worked in a care home in the late 80s / early 90s when we had patients like this who were clearly end of life GPs were allowed to administer morphine injections.

we buy my mother in law vital drinks. She has two of these a day 600cals each and just snacks but at least she is getting some nutrients.

I’m sorry you are going through this. My mum died like this, and it was horrible to see because there was nothing that could reasonably be done. They could have put her in a drip, but the resulting infections would have killed her. I opted for drugs that kept the discomfort away, and I still think it was the right choice. She lasted about a week after the last food and drink.

I wouldn’t be trying to push calories in. It will just prolong the pain for him. Sometimes it’s kinder to know when to let go and provide pain relief where possible.

I just wanted to give a quick update because you’ve all been so helpful and kind. I had a couple of really good conversations with people who were close to both of my parents about what they would have done and I’ve decided to stop Dad’s calorie supplements. I’ve also asked for a GP review of his meds to take anything that’s not essential away. He’ll be offered food and fluids but it won’t be forced on him.

Dad’s eaten very little today and been actively turning his head away so I think it’s the right thing to do. I hope it is anyway.

Sad as it is, I think that's the right decision @harriethoyle .

I think you’ve made the right decision too, as hard as it must have been

Bless you, well done for being brave.

Dad is now on anticipatory drugs and a syringe driver being fitted this afternoon for morphine and midazolam. He’s very calm and dog and husband are supporting me. I don’t think it will be long now.

I’m so sorry @harriethoyle. Such a heartrending thing to go through but it does sound as though it’s going to be peaceful at least

Thank you @harriethoyle for starting what has become a very loving and beautiful thread. Best wishes to you all at this strange time. It feels endless while it is going on, but it will end, and there will be peace, and the good memories will return. 💐

Thank you both. Once I took the decision to stop supplements and GP confirmed that Dad was at end of life it’s been quite a lot easier. There’s an inevitability about it now and I feel like I’ve done right by Dad getting him here in one piece and advocating for him in terms of medications etc over the next few hours and days. I don’t feel ready for it and I feel too young to be an orphan but I think that was always going to be the case. As a friend said, you can want it to be over quickly but still dread that because of what it means.

I’m now on the other side @harriethoyle😥, but found the stage you’re at the most difficult to bear. Be kind to yourself as well as being there for your dad. Putting music on for my dad when I couldn’t stay with him, made me feel like I wasn’t leaving him alone. Sending you hugs and wishing your dad peace.

I’m so sorry @SchoolNightWine - I hope you have got lots of support and your DF went peacefully . I’ve had the Rolling Stones on repeat for the last 48 hours. I’m word perfect now!

I am so sorry to hear this - but just try to hold on to the fact that you are letting him go with dignity and grace, as it is his time.

I am so glad you have real life support.

Is you dad still able to talk to you at all? Even if he isn't, he may be able to understand what you say, so you can use this time to say everything you want to say to him....

I know it's impossibly hard and sad. If you have any questions at all that those of us who have gone through it might be able to answer, please do ask.

Also, apologies if this isn't something you can think about right now.....

But made the decision to research funeral homes when dad was on his end of life journey. It did make things easier because it meant that as soon as he was confirmed as passed, I knew who I wanted to contact to collect him, and we didn't have to scurry around trying to choose the best funeral home.

My mom and brother had basically banned me from discussing this while he was dying as it felt wrong to them (everyone is different). But I was glad I had done it - and the funeral home i chose were utterly amazing.

Just something to think about. But equally if you can't deal with that right now that's totally understandable. And I am sure the management of the care home he is in will be able to support.

Sending much care and strength. Xxx

We must be very similar @Ilovelurchers because I’ve got the funeral directors selected, his coffin outfit picked out and funeral service planned. I find that sort of thing quite comforting to have under control if that doesn’t sound weird? Am reading Dad’s favourite book to him - also a good way to pass the time for me.

Think yourself lucky, I had Foster and Allen😂
But yes, the end was peaceful and mum and I have lots of people around us now.

We were also fairly prepared with funeral details. This time does give you time to think.

Thinking about you every day @harriethoyle🥰