Feeling uneasy about managed decline of mum by healthcare staff...

[spirituscorpus]

My mum has been in hospital following a bout of pneumonia (everyone in the family had a very bad flu).

Prior to admission, she was able to walk around her own house without a walking frame, able to go to the toilet as and when she needed and able to feed herself (she's 95 by the way).

From her first day of admittance in the hospital she's been treated as bed bound and even her 9 hour stay in the A&E corridor was stressful as she was asking for the toilet and nobody was willing to assist her.
She was moved from ward to ward during her 5 week stay and I have seen how the staff encourage patients of a certqain age to relieve themselves in bed telling them that they have pads.
There were also several times during my visits that mum would say she needed the toilet and I would ask the staff only to be told that they are busy doing lunches at the moment and will see to her when they finish. Fast forward 40 mins later and still nothing.

Needless to say, mum has become incontinent, or to be more accurate, conditioned not to ask for the toilet anymore.

Mum's food and drink intake has plummetted during her stay. It happened last time she was in hospital around Oct '23 but as soon as she got home she was eating normally again.

I was visiting her twice a day in hospital to feed her and she was taking it. Apparently, the staff were asking her if she wanted anything at meal times but if she was sleeping, drowsy or simply refused at that time then "the patient had refused food".

This was happening every day for five weeks.

Physio were visiting her periodically although no-one ever gave me a clear idea as to how often. Again, physios would ask mum if they could do some exercises with her or get her to walk but if she was reluctant or refused then again they recorded the patient as having refused therapy.

They weren't even helping her to sit in a chair and so she has spent 99% of her stay in bed.

With all things combined, the consultant and doctor have told me that due to her increased frailty and "lack of eating" then they believe she is coming to the end although when I asked directly if this was "end of life" they were reluctant to confirm as mum isn't "actively ill" as they put it.

I am at peace with this.

They have fast tracked mum's discharge to a local care home and I visit her there twice a day. It's very nice and mum looks very comfortable.

However, despite being told by a member of staff at the viewing that their policy is to try and get people in chairs and active in the environment in reality all they are doing is letting her sleep or drowse in bed.

As with the hospital, they ask her does she want to eat but if she says no at that time then they leave her alone.

On my visits, mum is more receptive to eating and drinking and actually eats a decent sized portion followed by a dessert and a drink but I feel like I am propping her up and that without my input she would probably be gone by now.

Like I said earlier, I am at peace with the situation if this is her end. She's not in pain, she's not uncomfortable and the room is very peaceful but.....I I feel uneasy at the significant role I find myself in.

I would feel very uneasy if I "allowed" her to die by not feeding her as it would almost feel like I was euthanising her.

I have written all of that and am not sure I even have a question at the end of it but any thoughts would be welcome...

 

[Knitandpurl]

My Mum was in a Home for 5 years , she seemed ok to me when she just started refusing to eat or get up. She would eat a bit if I tried really hard, but I think it was to please me and I stopped after about a week. I found it hard as I felt she could have been eith us longer but it was obvious she didn’t really want to be. When I broke down and cried on her she patted me on the hand and said “ You’ll be fine”. It was the last thing she ever said to me other than ‘yes, no etc. Msybe your Mum too has just had enough. Sending you big hugs and saying, do not feel guilty, you are letting her do what she wants.

 

[Mumlikesflowers]

I feel I would be writing exactly the same words if I had gone through what you have. I know you are completely right in everything you've seen.

It doesn't matter how old she is. Her needs should be met in the hospital and in the care home. And there would still be room for her will to go on or the contrary to make itself manifest. Our old people deserve good care.

I'm glad she's not in the hospital now. It's my experience with my Mum that you have to fight and that you have to step in. It's a simple case of not wanting someone to be neglected. It's totally different from wanting them to go on and on.

I have observed in my work what you describe when people use the person's saying no as the basis for inaction. Of course if you try your very best, come back later, they still say the same thing, that's fair enough but to make a half-hearted effort and then claim you're respecting the person's wishes, it's not the same thing. I understand though that chronic short staffing creates this low expectation culture. Personally I'd find it easier if someone turned to you and said, I'm so sorry, this isn't good enough is it? I mean, not so that you can say they admitted to it, just so you feel that everything you're seeing and therefore feeling is acknowledged somehow.

Do you think the Patient Liaison Service is an appropriate place to take your hospital story? Again, as I say, not to get angry, but to tell your Mum's story. You can't assume that these places have insight into the experience of patients and you're doing everyone a favour arguably if they do. Or try your local Healthwatch if you are in England and Wales. They don't hear from people nearly enough and they often have some good contacts at health trusts and CQC really rates Healthwatch which again gives it some influence.

 

[canary]

Hello @spirituscorpus

Pneumonia is a vicious disease. Before the advent of modern antibiotics it was a killer and it still knocks the stuffing out of our PWDs. My mum got pneumonia and although she recovered, it was the beginning of the end. She declined steadily afterwards, even though she was sent back to her lovely, caring, care home.

Its going to take your mum some time to recover and get her strength back. And it may be that she will simply decline further, Im afraid.

 

[Melles Belles]

@spirituscorpus
Sorry to hear about your mum’s decline.
Unfortunately the hospital physios can’t force patients to cooperate with their attempts to mobilise them. My daughter is a physio and it is so common for patients to refuse to cooperate (in hospital and when they are at home) even much younger patients who don’t have dementia. Not sure what the solution is.

 

[Spottydog]

This may or may not help. I would be doing exactly the same as you. You are giving your mum the most wonderful gift of your time, love and compassion which unfortunately the carers can't replicate. Keep doing what you think is right. In a battle between love and chemistry, chemistry always wins.

 

[wurrienot]

This is happening to dad too. He's had 3 weeks in hospital following a fall- nothing damaged, nothing showing up on a brain scan - but deemed too frail to come home. He'd been shuffling round the house using his Zimmer up to being admitted and although he'd had a couple of weeks accidents, these were because he couldn't get out of his chair rather than loosing control. He's now into his 2nd week in a care home and is being treated like he is incontinent. He has a catheter and is wearing pads. In hospital he was helped onto a commode, but is just told to do it in the pad now. He is offered food but given a knife and fork which he can't use unless I ask for a spoon. He's given drinks in a sippy cup but he can't tip his head back to use it. His water bottle is often filled to the top making it too heavy for him to lift. I know I'm a cynical so and so , but the frailty that they are exacerbating seems very convenient for the care home when they are charging dad £1300 a week.

 

[Hazara8]

@spirituscorpus
Sorry to hear about your mum’s decline.
Unfortunately the hospital physios can’t force patients to cooperate with their attempts to mobilise them. My daughter is a physio and it is so common for patients to refuse to cooperate (in hospital and when they are at home) even much younger patients who don’t have dementia. Not sure what the solution is.

I understand how difficult these situations can be. Barring clinical interventions and expertise it is generally true that Care at home by a family member can he truly beneficial. I acted as nurse-come-carer for my late mother at home through pneumonia twice and Alzheimer's up until admission to a Care Home at the peak of her dementia. The Care at the Home was very good. But l attended my mother every day and when finally admitted to hospital did likewise. I did so to ensure Care was ongoing as it should be. Many clearly cannot commit in that way due to work or family and so on. Then you hope that Care is properly in place and the whole ethic of what Care really means goes without saying. Unfortunately there are cases today when such Care verges on neglect. Many true accounts of horrendous waits in corridors and patients of a certain age seemingly left to their own devices. " Best Interests" is a credo in Care, but it seems to vary in application. I do know that hospital was the end of my mother's dementia journey. Not an ideal environment for dementia. I was with her during all procedures in order to calm her and to alleviate anxiety attacks. The staff of course were far too busy to address her in that way and even in the Home l spent many hours simply at my mother's side in order that she was never " alone". The truth of the matter is that Care is immensely demanding and yet immensely important. The psychological impact of hospital admission and all that entails can affect the health and welfare of a person in quite profound a way. Dementia even moreso. When Care is actively in place and of the highest order, then one can more readily accept " end of life " as it arises, because the loved one concerned often expresses that desire, especially in the light of long term illness. Non of this is easy because our way of life tends to relegate such things to the back burner until they arise and cannot be ignored. It is a very sad if not bewildering fact that in 2024 one hears often of harrowing reports of patient neglect or a lack of Care with regard to the elderly.

Death is a completely natural part of human existence. In fact a truth.
To deny that is to deny yourself which is obviously absurd. However it is life which is precious and ultimately a beautiful thing in itself when our instinctive humanity is in play. We call it love. That love should apply at every waking hour. Then one discovers that there cannot be apathy nor neglect because that love simply forbids it. The really sad thing is that even today in this complex and frantic world of electronic media which engages so many in often utterly trivial subject matter, that love becomes distorted or perhaps just abandoned because of various challenges which might arise.

 

[spirituscorpus]

Hello @spirituscorpus

Pneumonia is a vicious disease. Before the advent of modern antibiotics it was a killer and it still knocks the stuffing out of our PWDs. My mum got pneumonia and although she recovered, it was the beginning of the end. She declined steadily afterwards, even though she was sent back to her lovely, caring, care home.

Its going to take your mum some time to recover and get her strength back. And it may be that she will simply decline further, Im afraid.

She will decline anyway due to her age. She's 96 in two weeks

I understand how difficult these situations can be. Barring clinical interventions and expertise it is generally true that Care at home by a family member can he truly beneficial. I acted as nurse-come-carer for my late mother at home through pneumonia twice and Alzheimer's up until admission to a Care Home at the peak of her dementia. The Care at the Home was very good. But l attended my mother every day and when finally admitted to hospital did likewise. I did so to ensure Care was ongoing as it should be. Many clearly cannot commit in that way due to work or family and so on. Then you hope that Care is properly in place and the whole ethic of what Care really means goes without saying. Unfortunately there are cases today when such Care verges on neglect. Many true accounts of horrendous waits in corridors and patients of a certain age seemingly left to their own devices. " Best Interests" is a credo in Care, but it seems to vary in application. I do know that hospital was the end of my mother's dementia journey. Not an ideal environment for dementia. I was with her during all procedures in order to calm her and to alleviate anxiety attacks. The staff of course were far too busy to address her in that way and even in the Home l spent many hours simply at my mother's side in order that she was never " alone". The truth of the matter is that Care is immensely demanding and yet immensely important. The psychological impact of hospital admission and all that entails can affect the health and welfare of a person in quite profound a way. Dementia even moreso. When Care is actively in place and of the highest order, then one can more readily accept " end of life " as it arises, because the loved one concerned often expresses that desire, especially in the light of long term illness. Non of this is easy because our way of life tends to relegate such things to the back burner until they arise and cannot be ignored. It is a very sad if not bewildering fact that in 2024 one hears often of harrowing reports of patient neglect or a lack of Care with regard to the elderly.

Death is a completely natural part of human existence. In fact a truth.
To deny that is to deny yourself which is obviously absurd. However it is life which is precious and ultimately a beautiful thing in itself when our instinctive humanity is in play. We call it love. That love should apply at every waking hour. Then one discovers that there cannot be apathy nor neglect because that love simply forbids it. The really sad thing is that even today in this complex and frantic world of electronic media which engages so many in often utterly trivial subject matter, that love becomes distorted or perhaps just abandoned because of various challenges which might arise.

That was beautifully written.

My mum is 96 is a few weeks so perhaps more than many I've come to terms with death and loss and if I am being honest, I've been grieving her for a number of years now.

In some ways it's become easier that way as the loss is in increments. Mum's Alzheimers has been relatively slow in progression thankfully and I remain convinced that the loss of all her friends and unable to read/watch TV due to central vision loss have contributed to her decline as much as the Alzheimers.

She's had a rich life.

A wartime refugee from Europe and all the upheaval and drama that entailed and then years of joy and happiness as the euphoria of peacetime brought stability finally to her family.

What has made this whole journey easier for me personally is the lack of credible options available to me at this stage. It would have been much harder if I still have a few options still in play as I would then be stressing as to whether I made tghe right choice or not or should have done something else....or not.

My mother's age has also made me feel remarkably at peace with the inevitability of this path we are now on.