End of life with our mum - scared to ask the question

[Loo]

Hi all
I've been reading posts on this site for a while now and just wanted to say what a wonderful kind community you all are. Although every persons situation is incredibly sad and difficult there is such tenacity to get things right, humour and kindness amongst you all.
My mum was diagnosed with vascular dementia about 3 years ago but had been suffering for some time before that. We are incredibly lucky there are 3 of us (sisters) who are all local. So between us we have managed over the last few years.
After a dreadful fall late last year and a worsening in her dementia we had to make the decision for mum to live in a local nursing home. They are really great with her.
She had a leg wound (from another fall) that was treated in A&E a few weeks ago and then discharged. Within a week she was in hospital with Covid and community acquired Pneumonia along with a UTI and urinary retention. I know from this site this is very common.
She's had 5 days of antibiotics and has been discharged back to the home. She has deteriorated massively over the last few weeks. She sleeps most of the time but with help can walk and sit in the lounge. Not particularly interested in food or drink. She is still catheterized and is no longer on antibiotics.
The reason I'm finally typing on here is that I really don't know if this is the end and why am I scared to ask what the next few weeks will bring? It's so very painful to watch her fade and feel so uncomfortable. I think my fear is that this is the beginning of a phase of hospital admissions. I don't want her to go through that. Thanks for listening x

 

[Palerider]

Hi all
I've been reading posts on this site for a while now and just wanted to say what a wonderful kind community you all are. Although every persons situation is incredibly sad and difficult there is such tenacity to get things right, humour and kindness amongst you all.
My mum was diagnosed with vascular dementia about 3 years ago but had been suffering for some time before that. We are incredibly lucky there are 3 of us (sisters) who are all local. So between us we have managed over the last few years.
After a dreadful fall late last year and a worsening in her dementia we had to make the decision for mum to live in a local nursing home. They are really great with her.
She had a leg wound (from another fall) that was treated in A&E a few weeks ago and then discharged. Within a week she was in hospital with Covid and community acquired Pneumonia along with a UTI and urinary retention. I know from this site this is very common.
She's had 5 days of antibiotics and has been discharged back to the home. She has deteriorated massively over the last few weeks. She sleeps most of the time but with help can walk and sit in the lounge. Not particularly interested in food or drink. She is still catheterized and is no longer on antibiotics.
The reason I'm finally typing on here is that I really don't know if this is the end and why am I scared to ask what the next few weeks will bring? It's so very painful to watch her fade and feel so uncomfortable. I think my fear is that this is the beginning of a phase of hospital admissions. I don't want her to go through that. Thanks for listening x

Hi @Loo

It is a distressing time and I am going through the same journey with my mum. Its been a rollercoaster ride from the start and it never seems to settle down with one issue after another. The problem is that no one knows when the end will be and I've been here now a few times in the last two years with my mum. I do know that it was time to have some conversations about what would happen if mum deteriorated and became very unwell and there was a unaminous decision that resuscitation would not be in my mums best interests -its a hard decision to come to, but we don't do this on our own and in the end its a medical decision anyway. All you can do in my experience is go with it and be there the best way you can for her -be her advocate.

 

[Duggies-girl]

Hi @Loo you are right to be concerned about any future hospital admissions as they probably won't do your mum any good. I made a care plan with my dads GP and we agreed that he would not go to hospital again if it could possibly be avoided. He had already had a disastrous stay in hospital and the thought of him going back again was not something that I or he (if he could have remembered) would want to repeat. It is probably time to make a care plan for your mu as to any future treatments or not and this is something that you need to discuss with her GP and the care home. It may be better to just concentrate on keeping your mum comfortable and avoiding unnecessary intrusive interventions at this stage for her sake but you need to discuss it first so that everyone agrees.

There is no way of knowing how long this can go on. My dad proved everyone wrong on a number of occasions and recovered from things that would have floored a mule but of course it crept up on him eventually. The main thing is to not cause any discomfort with treatments that will not help in the long run but to concentrate on quality of life and comfort.

 

[Loo]

Hi @Loo

It is a distressing time and I am going through the same journey with my mum. Its been a rollercoaster ride from the start and it never seems to settle down with one issue after another. The problem is that no one knows when the end will be and I've been here now a few times in the last two years with my mum. I do know that it was time to have some conversations about what would happen if mum deteriorated and became very unwell and there was a unaminous decision that resuscitation would not be in my mums best interests -its a hard decision to come to, but we don't do this on our own and in the end its a medical decision anyway. All you can do in my experience is go with it and be there the best way you can for her -be her advocate.

Thank you. Yes we have DNR in place. She's so frail it would be unkind. It's the most horrible illness isn't it? We lost our dad to cancer over 20 years ago and had the most wonderful at home care with Macmillan. I just feel my mum deserves the same. Her nursing home is fab by the way, it's just not home. Thanks for replying. It sometimes good just to get things off your chest. Sending love and support to you and your mum xxx

 

[Loo]

Hi @Loo you are right to be concerned about any future hospital admissions as they probably won't do your mum any good. I made a care plan with my dads GP and we agreed that he would not go to hospital again if it could possibly be avoided. He had already had a disastrous stay in hospital and the thought of him going back again was not something that I or he (if he could have remembered) would want to repeat. It is probably time to make a care plan for your mu as to any future treatments or not and this is something that you need to discuss with her GP and the care home. It may be better to just concentrate on keeping your mum comfortable and avoiding unnecessary intrusive interventions at this stage for her sake but you need to discuss it first so that everyone agrees.

There is no way of knowing how long this can go on. My dad proved everyone wrong on a number of occasions and recovered from things that would have floored a mule but of course it crept up on him eventually. The main thing is to not cause any discomfort with treatments that will not help in the long run but to concentrate on quality of life and comfort.

Thank you so much. I think you've picked up on my main concern. It's sometimes good to hear someone else say it. Mum is 'as tough as old boots' as they say. It's amazing she's here now after the week she's had. I will speak to the care home and GP as the idea of another stay wouldn't feel beneficial and would be incredibly stressful for her. Thanks again. Sending love x

 

[Sheelagh7]

@Loo sorry to hear you are in this sad situation, I think we can all sympathise and know exactly how you are feeling. It's awful to see a loved one suffer so much just because they have dementia rather than another illness. I agree with @Duggies-girl, a meeting with GP is the best way forward. They can't hasten the end, but in my mother's case he accepted that the treatment plan was prolonging her suffering that that it was "in her best interests" to no longer have antibiotics, go to hospital (except for broken bones), or be swab tested for infection. He doubled the strength of her morphine patches (she had gangrene in her feet) to control the pain. It's a really difficult conversation to have, but it was a huge relief once the new plan was implemented and mum passed away about 3 months later.