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End of Life Care at Home - what are we supposed to do??

MerryWive

Registered User
Mar 20, 2015
55
Hi all, Mum In Law has been cared for at home full time for five and a half years, late stage dementia on CHC; a few weeks ago she had a massive stroke. She was completely dependent on us before, but now she is also completely non responsive. The doctors regard her as a 'goner' and will not / cannot do anything for her. She is still swallowing, just about. So it seems that our only options are to keep trying to get her to eat and take fluids (which is often traumatic for all involved) or to sit back and watch her starve to death. It seems insane, so incredibly cruel. My husband and brother in law are dedicated to doing everything to help her and they cannot countenance letting her starve to death. We understand that may be inevitable if her swallow fails, but I am worried as to how my husband will cope with that. I just wonder if anyone else has been through this situation and has any advice or words of support as I am finding it really stark right now. Am I missing something here? What are we actually supposed to do?!
 

fizzie

Registered User
Jul 20, 2011
2,730
How terrible for you all, I am so sorry. In our area we have a Hospice at Home service attached to the local hospice. I'm just wondering if you might be able to give their palliative team a call or go in and see them and ask for advice. You do need some expert input. I'm sure someone else will be along shortly with some more useful information. Thinking of youx xxx
 

MerryWive

Registered User
Mar 20, 2015
55
How terrible for you all, I am so sorry. In our area we have a Hospice at Home service attached to the local hospice. I'm just wondering if you might be able to give their palliative team a call or go in and see them and ask for advice. You do need some expert input. I'm sure someone else will be along shortly with some more useful information. Thinking of youx xxx
Thanks for your reply Fizzie :)

Yes the palliative team from a local hospice visited when MIL came back from hospital, sorry I should have included that info in my post! They seemed kind and pretty knowledgeable. We showed them how we were giving her fluids and they said it was fine to do that at the times when she seems more awake, which is what we have been doing. So that's that really. Feel like we are on our own again.
 

fizzie

Registered User
Jul 20, 2011
2,730
if you are already in touch with the hospice then that is a good foundation. I would phone and tell them that you feel very isolated and frightened and would it be possible to have some sort of regular visit even if it is only twice a week at this stage or something like that because you don't feel you can cope
 

MerryWive

Registered User
Mar 20, 2015
55
if you are already in touch with the hospice then that is a good foundation. I would phone and tell them that you feel very isolated and frightened and would it be possible to have some sort of regular visit even if it is only twice a week at this stage or something like that because you don't feel you can cope
Thanks that's good to bear in mind. To be honest my husband and brother in law prefer minimal interference and it is their call so there is not much I can do unless they start to say they can't cope. I am just having trouble coping with witnessing it all and trying to support them through it. I lost my Mum quite a while ago and I miss that emotional support I guess. My father and particularly my step mother seem to want MIL to die as soon as possible, she thinks we should just pump her full of morphine (even though she is not in pain and not on morphine) and can't understand that my husband does not want his mother to die. So I don't feel I can go to them for support since they will just criticise what he is doing and I feel caught in the middle. I guess I am really wondering what other people do in this situation as it seems an impossible place.
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Awful times for you all.

Please bear in mind, it's comes to a point when She's not dying because she's not eating and drinking, she's not eating or drinking because she's dying, as awful as it is to witness.

The body starts to shut down so food and fluid are not needed. Just moistening of the lips is enough right at the end.

My thoughts are with you xxxx


Sent from my iPhone using Talking Point
 

canary

Registered User
Feb 25, 2014
12,257
South coast
Hello merrywive, what a difficult time for you and your husband.
I wanted to explain that at the end the body usually shuts down gradually. They stop eating and drinking because the body can no longer absorb nutrients. They are not starving to death, it is the fact that they are already dying that stops them from eating.
Morphine in a patch or syringe driver may also be given right at the end - it doesnt hasten the end, it will just make sure that her passing will be painless.
(((hugs))) to you and your husband.
 

MerryWive

Registered User
Mar 20, 2015
55

fizzie

Registered User
Jul 20, 2011
2,730
Thanks that's good to bear in mind. To be honest my husband and brother in law prefer minimal interference and it is their call so there is not much I can do unless they start to say they can't cope. I am just having trouble coping with witnessing it all and trying to support them through it. I lost my Mum quite a while ago and I miss that emotional support I guess. My father and particularly my step mother seem to want MIL to die as soon as possible, she thinks we should just pump her full of morphine (even though she is not in pain and not on morphine) and can't understand that my husband does not want his mother to die. So I don't feel I can go to them for support since they will just criticise what he is doing and I feel caught in the middle. I guess I am really wondering what other people do in this situation as it seems an impossible place.
I think it is wonderful that you are all looking after her so carefully and tenderly to the end of her life. This must be really hard for you - even more so because of your own personal circumstances but you are giving your MiL a truly precious gift. Not many people have the peace and comfort of dying in their own home in the heart of their family. What other people think is not important. Just remember that the Hospice are there for advice and care if you need the support, either now or afterwards and if you are finding it very difficult to cope then don't be brave - go and ask for help from them. When my husband died our Hospice was a life saver for me and for my children and I still go back 2 years on to talk things through.
 

Spiro

Registered User
Mar 11, 2012
522
Glad to hear that you're in touch with the Hospice at Home team. I was wondering if they have a helpline you can call. If not perhaps Macmillan Nurses or Marie Curie Nurses might be able to help. AS and Marie Cure Cancer Care published a paper last year about end of life Dementia Care, you can find it on the their website.

It's so nice to hear that your MIL is able to be cared for at home.
 

MerryWive

Registered User
Mar 20, 2015
55
Thanks

Thanks everyone for your kind replies and words of encouragement. I deeply appreciate them!
 

Kitten71

Registered User
Jul 22, 2013
157
East Yorkshire
Hello merrywive, what a difficult time for you and your husband.
I wanted to explain that at the end the body usually shuts down gradually. They stop eating and drinking because the body can no longer absorb nutrients. They are not starving to death, it is the fact that they are already dying that stops them from eating.
Morphine in a patch or syringe driver may also be given right at the end - it doesnt hasten the end, it will just make sure that her passing will be painless.
(((hugs))) to you and your husband.
Thanks for that Canary, that is so helpful. My dad barely eats these days so your explanation about how the body shuts down is almost a relief. The thought of dad starving to death has been preying on my mind but it seems I got it wrong. This is my first visit to the end of life page as I'm beginning to think it's something I need to consider and I must confess to reading all the posts in floods of tears :(
 

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