Advanced dementia and forgetting how to eat

So sorry for your loss. I am glad you got to spend that quality time with him and that his death was peaceful for all of you.

I know how upsetting it must be but yes, do take comfort from the fact that he had a very peaceful death and it does sound very Rock N Roll.

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🥰

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

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.

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.

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. 💐

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

Bless you, well done for being brave.

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

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

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’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.

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 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.

Bless you all - sending loads of care and strength to everyone who has a loved one on this position - be kind to yourselves - keep reminding yourselves there is no right answer, so it's fine to get things wrong sometimes and that doesn't really matter - it's the illness that is at fault, not you!

Reading your experiences is making me realise how very lucky we were to be able to keep dad at home - I absolutely could not have done this without quitting my job and losing my house, if mom hadn't been alive ... It gave us so much time with him and we were so lucky to have that.

And the most important advice I can give is to spend all the time you can with them (but not to the detriment of your own mental health, of course - your loved ones would not want that!). But when you can, just sit with them, be with them, talk with them (or to them, if they are no longer verbal). Hold their hands, read to them, whatever they enjoy.... I spent many happy hours folding up kitchen roll as "handkerchieves" for my dad, as for some strange reason he was obsessed with handkerchieves - absolutely loved them - they seemed to make him so happy. When he finally passed and we cleared out his stuff we found hankies everywhere - my daughter and I actually embroidered his initials onto some proper linen ones and put them with him when we visited him in the chapel of rest....

This is just a silly example - what I am trying to say is, when you let go of the idea of keeping them alive at any cost, it actually gives time and head space to enjoy the time together that still can be enjoyed.

And you may find some golden moments. My dad had an unusual burst of lucidity on the final evening of his last hospital stay (about three weeks before he finally passed, it turned out) and we had the most amazing conversation, when he told me how much he loved and admired my brother and mom, and then told me to "never change". It was beautiful.

Nobody would choose dementia over a quick death, but the one gift it does give is time, to say all the things you wanted to say, and show all the love you can.

It's sparse consolation, but it's not nothing. Xxx

Thank you @harriethoyle. Much love to you and your DF too. ❤ It does sound like we are in very much the same situation. I couldn't quite believe it when I saw your thread pop up and I wondered for a moment whether I'd actually started it myself after too many glasses of wine as that is exactly the thread subject line I would have used....

I spoke to one of the nurses at Mum's home today but apparently none of the carers have reported anything like we've seen when they've been feeding her and she was actually discussed at the dietician MDT today. She's still losing weight, not very much this month, but they've taken her off the nutritional supplements as she just refuses to drink/eat them as she finds them too sweet. I did ask the nurse for someone to actually observe her being fed. The home is usually superb so I am finding it hard to understand why only we have witnessed this change. And I know from the research I've done that the next step is likely to be forgetting how to chew, pocketing food and then losing the ability to swallow.

I've decided that I'm no longer going to take cake or biscuits in for her. Just yoghurt, mousse or those mini trifles and similar. Only very soft foods that she can take from a spoon. I just can't take the risk of her choking when it's me feeding her when we visit. I'd never forgive myself.

My heart goes out to every single one of you dealing with this horrendous situation, whether as a result of dementia or other awful illnesses.

The feeling of helplessness is hard. All you can do is make him comfortable and visits. My nan doesn't know me. When I visit I dont tell her who I am anymore. I just try to leave her with a feeling of calm and care. In my mind she might forget as soon as I leave but somewhere inside felt that comfort if only for an hour once a month. She cant cope with longer than an hour. She'll tell me shes very busy.

It was the same for us when DF was dying of cancer. The best things we could do were to make him comfortable, be with him, talk to him about our lives together and what we knew of his life before becoming a Father and playing his favourite music and poetry.