Advice on feeding mum

[Magimum]

Hello everyone. This is my first post although i have been a member for a couple of years and have found it so helpful to read your posts as my mum has steadily deteriorated. I'm hoping someone might be able to help now, probably only to confirm my instincts are right, but any advice is gratefully received.

She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.

Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.

She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.

The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.

She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.

Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.

The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.

If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.

I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!

Hope this isn't too rambling…..

thanks for reading, Lisa

 

[Canadian Joanne]

Lisa, all I can say is what we would do with our mother. My sister and I decided a long time ago not to go to extremes. My mother had often said when she was well that she didn't want to be kept alive by machines. To me, that's essentially what PEG feeding is. There are other issues associated with PEG feeding, such as infections, the person pulling it out and so on.

Plus if your mother would have to be moved to nursing care, it certainly would be a disruption. If she is more or less content now, and you and your brothers are happy with the care, I would leave things as they are.

A thought - perhaps the home is suggesting the PEG feeding so that they cannot be accused of not covering all possibilities?

 

[canary]

A difficult time for you Lisa.

Like CJ, I too can only say what I would do. It has been brought sharply in focus to me as I have recently had to fill in a form for mum about end of life decisions, even though she has not yet reached that stage. PEG feeding was something that I specifically said I did not want for Mum. Im sure she would not want it herself. I would also not want Mum moved at that stage either.

Would it help if you thought about what you would advise for some-one else (not your mum) in this position?

 

[lin1]

Hi Lisa.
I can only say what we decided for my mum.
We chose not to have anything invasive done or unless absolutely necessary let her go to hospital .
We just wanted to keep mum comfy and happy

I suggest testing a sample of Mum's urine just in case an infection is causing this.
Another thing it could be is that Mum's taste has changed, perhaps try sweet things .

 

[Magimum]

Thank you all for your replies. As it happens, the consultant geriatrician was visiting this afternoon and he was really supportive, talking me (and the staff) through the pros and cons of a PEG tube. The upshot was that we all agreed that to carry on as we are is the best way for mum.

I think the carers will need support as they are finding it difficult to do nothing, as they see it. You're right that they are anxious that my brothers and I don't think they're neglecting mum. In fact nothing could be further from the truth and I told them so. Giving care is so much more than washing, feeding, dressing and mum is so fortunate to live where she does.

One thing the geriatrician said was that the hunger/thirst responses are inhibited in later stages, so mum probably isn't feeling distressed. She does seem content and I'm so grateful that her dementia hasn't caused her to be agitated or aggressive.

Thanks again for listening.

Lisa


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[sub]

QUOTE=Magimum;1090678]Hello everyone. This is my first post although i have been a member for a couple of years and have found it so helpful to read your posts as my mum has steadily deteriorated. I'm hoping someone might be able to help now, probably only to confirm my instincts are right, but any advice is gratefully received.

She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.

Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.

She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.

The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.

She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.

Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.

The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.

If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.

I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!

Hope this isn't too rambling…..

thanks for reading, Lisa[/QUOTE]


Hi Lisa
I came across Teepa Snow yesterday and find her really interesting. One of her talks is about Letting Go at the end of the disease. It can be found on you tube.

 

[sub]

sorry. first reply and I c;early havn't got the hang of it yet.

QUOTE=Magimum;1090678]Hello everyone. This is my first post although i have been a member for a couple of years and have found it so helpful to read your posts as my mum has steadily deteriorated. I'm hoping someone might be able to help now, probably only to confirm my instincts are right, but any advice is gratefully received.

She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.

Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.

She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.

The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.

She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.

Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.

The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.

If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.

I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!

Hope this isn't too rambling…..

thanks for reading, Lisa

Hi Lisa
I came across Teepa Snow yesterday and find her really interesting. One of her talks is about Letting Go at the end of the disease. It can be found on you tube.[/QUOTE]

 

[Magimum]

Sub, thank you so much for posting about Teepa Snow. I wasn't aware of her before. I'll take a look at her videos with interest.



Sent from my iPhone using Talking Point

 

[katek]

QUOTE=Magimum;1090678]Hello everyone. This is my first post although i have been a member for a couple of years and have found it so helpful to read your posts as my mum has steadily deteriorated. I'm hoping someone might be able to help now, probably only to confirm my instincts are right, but any advice is gratefully received.

She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.

Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.

She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.

The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.

She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.

Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.

The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.

If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.

I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!

Hope this isn't too rambling…..

thanks for reading, Lisa

Hi Lisa

I was interested to read your story, and feel for you in the dilemma you now have, which, as you say, must be different when you are now a relative and not a nurse in the same situation.

(I am a little surprised that the home are talking about PEG feeding, as I had heard that it is not always advisable for patients with dementia as there is the risk that they can pull them out if they don't understand what they are there for.)

Will the decision be down to you and brothers? In other words, do you have PoA? If so, would your mother herself have wanted one? And needing to move to a nursing home would be an upheaval for her, as you say.

I would like to share my story, which may help you when weighing up the pros and cons. My sister, aged 50, had a PEG tube inserted after an emergency admission to A&E due to severe weight loss. She had lost the ability to swallow (following being at the stage your Mum now is) due to advanced MS, and she also had severe cognitive impairment. My mother and I had PoA for Finance, but not Health and Welfare. If we had, we would have had to make that difficult decision on her behalf. We probably would have said no, as that is what my sister would have said. But the decision was out of our hands anyway, and the medics thought it would be in her best interests to have one.

She did then go on to put the weight back on, although was still not a 'well' person anyway (bedbound, incontinent, unable to speak etc). However, less than a year later she died - in A&E after an emergency admission for severe fever. One of the two causes of death on the death certificate was sepsis as a result of PEG tube infection. The other was aspiration pneumonia (caused by inhalation of vomit - she could not swallow). It was not a nice way to die.

We would rather that my sister had not had the PEG tube, and allowed nature to take its course. In that case she could have gone to a hospice and had a more natural ending. I know that this is a huge decision for anyone to make, but if it has to be made, I would have to say go by your instincts, bearing in mind what your mother would have wanted.

 

[katek]

Hi Lisa

I was interested to read your story, and feel for you in the dilemma you now have, which, as you say, must be different when you are now a relative and not a nurse in the same situation.

(I am a little surprised that the home are talking about PEG feeding, as I had heard that it is not always advisable for patients with dementia as there is the risk that they can pull them out if they don't understand what they are there for.)

Will the decision be down to you and brothers? In other words, do you have PoA? If so, would your mother herself have wanted one? And needing to move to a nursing home would be an upheaval for her, as you say.

I would like to share my story, which may help you when weighing up the pros and cons. My sister, aged 50, had a PEG tube inserted after an emergency admission to A&E due to severe weight loss. She had lost the ability to swallow (following being at the stage your Mum now is) due to advanced MS, and she also had severe cognitive impairment. My mother and I had PoA for Finance, but not Health and Welfare. If we had, we would have had to make that difficult decision on her behalf. We probably would have said no, as that is what my sister would have said. But the decision was out of our hands anyway, and the medics thought it would be in her best interests to have one.

She did then go on to put the weight back on, although was still not a 'well' person anyway (bedbound, incontinent, unable to speak etc). However, less than a year later she died - in A&E after an emergency admission for severe fever. One of the two causes of death on the death certificate was sepsis as a result of PEG tube infection. The other was aspiration pneumonia (caused by inhalation of vomit - she could not swallow). It was not a nice way to die.

We would rather that my sister had not had the PEG tube, and allowed nature to take its course. In that case she could have gone to a hospice and had a more natural ending. I know that this is a huge decision for anyone to make, but if it has to be made, I would have to say go by your instincts, bearing in mind what your mother would have wanted.

Lisa,

Since posting this I have seen that you have, upon medical advice, made a decision to leave your mum as she is, which I think is the right one.

K.