What should I expect?

[Danni]

Hello

I am so relieved to find this forum, I've got so many questions!
My mum is late stage vascular dementia and this stage has happened so rapidly, I'm scared for her.
She has just this week, moved into to a lovely nursing home, where she is being so well cared for, compared to the awful respite home she has been in for the last five weeks.
The Manager of the nursing home has invited us to a meeting to discuss her end of life care next week and I'm not sure what to expect or what things I should be asking for. I know I do not want her resuscitated or drip fed, but what else should I be thinking of, or asking for? I know different people want different things for their loved ones, but I would be really grateful to hear any of your thoughts or experiences with this.
We never discussed any of this with her and now it's too late sadly. She in no way can make any decisions for herself.

 

[nellbelles]

Danni

Welcome to TP.

I had a phone consultation with my husbands CH's GP, yes we discussed DNR, and how much hospital intervention, don't worry you will be listened to.

Take your time in deciding what you want to happen

 

[Danni]

Thanks for your reply Helen.

 

[annie h]

Yes - DNR and that you don't want IV fluids if possible.

Eating/drinking - it's very difficult to know whether fluids are being refused or if they are simply having difficulty or pain swallowing. You may want to try to be present sometimes to make sure that the carers aren't trying too hard - it's a really difficult balance for them especially for the less experienced ones and then they may be worried about what they think the relatives want or expect.

Also, depending on where she's currently at, whether they have the Just in Case meds in place - especially if you are approaching weekends and you feel she is close to the end.

At what point it would be appropriate to stop non-essential medication which becomes just an added nuisance when there are so many other awful things going on.

Make sure it's understood that you want openness about how things are progressing - staff sometimes reluctant to engage in conversations about end of life and some of the specific points above as presumably some relatives react badly.

I am sorry you are going through this, I know how awful it is as I've just been through it with my mother in the last couple of months. Such a sad time for you.

 

[Danni]

Thank you Annie, that's really useful.

They are insisting that she drinks and it's clear she doesn't always want to. They always seem to be pleased with themselves when they tell me 'she has had lots to drink today'.
She is quite frequently retching or actually sick, even though it's all fluids.
She is being given loads of medication for other things, so I will talk to them about the need for them. It's hard to tell if she's not eating because she has difficulty swallowing or has just lost the will to eat. She has lost about 3 stones in weight over the last 3 months. I am hoping with all my heart that she finds some peace soon.

 

[annie h]

Morning Danni,

Yes, that sounds really familiar. The absolutely overriding objective is to keep her as comfortable as possible and to an extent that clearly means trying to maintain a degree of hydration because dehydration is itself horrible.

Are they thickening the fluids? This might help if she is having trouble swallowing. If not, talk to the GP, or some people seem to need to get a SALT (Speech & Language Therapist) assessment in place to do this. Although my mum had had one in place in the past she didn't at the time but I was still able to cajole the nurse in charge to authorise their use - the SALT assessment usually takes a while to happen after it's requested so waiting for it is probably not an option.

It's so hard when you can't tell whether the person actually wants the drink but can't swallow, or actually is refusing, and I found this one of the most painful phases. If you can be there sometimes when they are giving her fluid it may help. I found that some staff were better than others - mainly obviously experienced staff were better - and I actually asked for one lovely but in my view over-zealous member of staff to be kept away from that task for exactly the reasons you describe.

As she becomes worse, they will probably start to use large cotton buds to moisten her lips and keep her mouth clean and hydrated. If she is still wanting to take fluids she'll probably show this by sucking them.

I didn't mention skin lesions yesterday - is she on an air bed if necessary, and are they taking precautions to ensure she doesn't get any sores.

I hope she will find peace soon too

 

[Tezza]

Hello Danni
How awful for you :-(

I think people have given some really good advice there. Its a horrid time, and you have to make sure that anyone looking after your loved one is being cared for in the way they would want to / and you would want her to be looked after.

We have a DNR in place for my uncle - should anything dreadful happen.

In terms of fluids, with my uncle, he was wrenching almost every time he had a drink. We now use a thickening agent after speaking with one of the consultants - its called "Thick N Easy". It is just a starch based product, and you add it to any fluid…so, we put it in uncles water, coffee, tea etc. You can make the liquid as thick as is necessary. so, you could even make it like a custard consistency. It has made a HUGE difference to our uncle. It was explained to us that our Uncle has almost forgotten how to swallow…he would keep the water in his mouth, and you could almost see in his face that he wasn't quite sure what to do with it..then eventually it would trickle don, and he would aspirate…awful to see.

The thickener seems to work by making the fluid seem more like a solid, and it automatically seems to engage the natural eating/drinking mechanism.

I hope this helps a little
terry
x

 

[Danni]

Thank you so much for the replies. It's so comforting to know that there are people out there that understand.
She has been in a residential home for 5 weeks that made it clear to me frequently that they were carers and not nurses. Consequently, she has not been getting the nursing care she needed. This included an ordinary mattress that she laid on the whole time. They didn't attempt to get her out of bed because she told them she didn't want to. She has developed bed sores and complains of the pain from them constantly. She has been in the nursing home for 6 days and they have her on an air bed, which will hopefully improve things.
X

 

[Danni]

We went to the meeting. I was so incredibly emotional. It was quite detailed, things like hospitalisation, IV feeding, medication and DNR. It felt so surreal singing a piece of paper that said I didn't want them to save her life if she had a heart attack. What sort of a daughter am I?
They even asked who the undertaker would be and if she would be buried or cremated. I was really taken aback by that.
The nursing manager was so kind and caring, but she knows from her many years of experience that mum is in her last weeks. She was trying to be tactful, but made this very clear to me.
In the meantime, mum has started eating small amounts after having nothing at all for 5 weeks. They are giving her puréed food and she seems to enjoy it! What is going on? She has been surviving on water and small amounts of a meal replacement shake. What would make her suddenly find an appetite? So many questions.... X

 

[annie h]

Hi Danni,
Sounds like you're handling it really well. It'll help having an open line of communication with the nursing manager. If your mum starts eating and drinking again it is not impossible that she'll stage a comeback for a while. We had given up on my mother a couple of times over her last 12 months and for some reason she just turned around and came back. It was difficult to know why but I would guess it was because she just decided she was going to carry on fighting. Maybe the better nursing care in your mum's new home has made her feel more comfortable and positive. You have to be realistic though. If your mum's only been drinking tiny amounts for weeks drinking a little extra isn't going to make the difference. But you can be comforted that it indicates that they are keeping her a bit more comfortable.

It's not right to see agreeing to DNR as agreeing not to save her life - it's agreeing to let her go if that is the best thing for her. If you look around on TP you'll find threads about DNR and the horrors of resuscitation if someone has a heart attack - "saving a life" is a rather benign way of describing something that is actually rather violent and unpleasant and which can result in relatively serious physical injury.

I was relieved to find after Mum died that she'd specified in her will that she wanted to be cremated which relieved me of that decision - it may be worth checking to see if your mum has given an indication of her wishes.

I hope you have someone to help you through this as it's a difficult burden to be carrying on your own, but as you know now there are always people on TP who'll give you support and advice at least.

 

[Pickles53]

We went to the meeting. I was so incredibly emotional. It was quite detailed, things like hospitalisation, IV feeding, medication and DNR. It felt so surreal singing a piece of paper that said I didn't want them to save her life if she had a heart attack. What sort of a daughter am I?
They even asked who the undertaker would be and if she would be buried or cremated. I was really taken aback by that.
The nursing manager was so kind and caring, but she knows from her many years of experience that mum is in her last weeks. She was trying to be tactful, but made this very clear to me.
In the meantime, mum has started eating small amounts after having nothing at all for 5 weeks. They are giving her puréed food and she seems to enjoy it! What is going on? She has been surviving on water and small amounts of a meal replacement shake. What would make her suddenly find an appetite? So many questions.... X

Danni you are a daughter who is doing the very best for her mum in the hardest of situations. Facing up to the truth is awful but it's the right thing to do. I remember being shocked when the senior nurse at MIL's nursing home told us we should be thinking about end if life care but he was right, she died a few weeks later. Now we are facing the same thing with mum.

 

[Danni]

Thank you for your kind words. Pickles, you poor love. Once is more than anyone could bear, let alone both parents. My heart goes out to you. X

 

[Pickles53]

Thank you for your kind words. Pickles, you poor love. Once is more than anyone could bear, let alone both parents. My heart goes out to you. X

Thank you Danni for your kind words. MIL had dementia for a long time and FIL cared for her do devotedly until the last few months of her life. Physically she stayed well too for most of that time. They died within a few weeks of each other summer 2013.

My mum had mobility problems because of arthritis but that was all until things began to go wrong towards the end of last year. I couldn't believe it was all happening again, thankfully I had already decided to retire around the same time. I haven't done much of what I planned to do because mum needed so much help. At least we have a bit more time now, it was a nightmare when we were both working full time and living miles away from them all.

Hope you are managing to cope, at least it sounds like the staff in your mum's nursing home are supportive and kind. I have signed a DNR for my mum and also said I would not want to subject her to any artificial/tube feeding as she would find it dreadfully distressing.

 

[loza]

last stage dementia?????

hi
would anyone explain what late stage dementia is pls, Mum is in a care home, she no longer talks she cant feed herself even finger foods, she cant give herself a drink, she is doubly incontinent, she is eating as they are feeding her, i dont think she knows me anymore, she doesent focus on photo's i do play music to her sometimes she will almost cry but no tears. We just seem to go from week to week no one says anything, just seem to be floundering in the dark, I dont want to actually put the question to anyone face to face.