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End Of Life? - Carers UK Forum

End Of Life?

Share information, support and advice on all aspects of caring.
Hi Guys,

Hope everyone is coping as well as possible.

This is quite a difficult one and I'm not sure if anyone's had any experience of this, but I figured you lovely people would be the best to ask.

My Gran is losing the ability to move her arms now and her speech is nearly gone (MND for those that haven't seen my various posts before). I had quite a difficult conversation with her yesterday evening about what she wants to happen when she can no longer use her arms. She doesn't have a feeding tube and this is no longer an option for her, according to her palliative team.

She told me that she does not want someone to feed her when she can no longer do this herself (this will also mean no liquids being provided for her). She told me (in her way) that she struggles to swallow when she's controlling feeding herself, so she doesn't want someone doing it for her and potentially effing it up (that's the short version of what she said).

Has anyone been in this type of situation before or heard of anyone who has? I find I can cope with anything if I know what's likely to happen, as then I can get my head around it and 'mentally prepare'. It's the not knowing that's very scary at the moment- I hate the idea of her suffering and essentially starving to death.

Any thoughts greatly appreciated (and sorry if this is a sensitive topic for anyone- I just have nowhere else to turn to ask these kinds of questions).
Broostine93 wrote:
Wed Nov 13, 2019 10:47 am
Hi Guys,

Hope everyone is coping as well as possible.

This is quite a difficult one and I'm not sure if anyone's had any experience of this, but I figured you lovely people would be the best to ask.

My Gran is losing the ability to move her arms now and her speech is nearly gone (MND for those that haven't seen my various posts before). I had quite a difficult conversation with her yesterday evening about what she wants to happen when she can no longer use her arms. She doesn't have a feeding tube and this is no longer an option for her, according to her palliative team.

She told me that she does not want someone to feed her when she can no longer do this herself (this will also mean no liquids being provided for her). She told me (in her way) that she struggles to swallow when she's controlling feeding herself, so she doesn't want someone doing it for her and potentially effing it up (that's the short version of what she said).

Has anyone been in this type of situation before or heard of anyone who has? I find I can cope with anything if I know what's likely to happen, as then I can get my head around it and 'mentally prepare'. It's the not knowing that's very scary at the moment- I hate the idea of her suffering and essentially starving to death.

Any thoughts greatly appreciated (and sorry if this is a sensitive topic for anyone- I just have nowhere else to turn to ask these kinds of questions).
Have you asked the nurses? Speak to your GP to see if he can help you access end of life care and services for her. Involve her in discussions about the various options and so on. What would she prefer honestly? You may also find this article on end of life care worth reading too https://www.nhs.uk/conditions/end-of-life-care/
You need to get the ball rolling now.
I am concerned for you facing this at home. Is there any suitable hospice care locally?
I'd suggest asking the palliative care team for a place in hospice. Hospice would be able to look after her and explain her condition to you at this sad time.
My dad spent the last week of his life in a hospice, he had prostate cancer.
Mum was very disabled herself, but trying to care for dad.
I would take her to be with dad every day, I think hospice care at the end was a relief for both of them.
The hospice was a beautiful place, everyone had their own rooms, with French doors overlooking a garden tended by volunteers. Everyone there was very friendly. Dad finally had the 24/7 nurses on call he needed, and was very comfortable. There is nothing depressing or frightening about a hospice, their motto is something like "Making every day count".
Have you made any preparations for when the suffering is over?

I know it sounds horrible, but please think about which funeral director you will use, and the cost involves. It's horrible now, but I must raise the subject.

When mum in law was very ill, the nursing home tried to get father in law to make plans, but he just buried his head in the sand. We were left to make arrangements on a Sunday evening. It was a complete nightmare.

When my mum was ill, the doctors said she could go within 24 hours, or last months. I had a holiday planned, and the doctor insisted that whatever happened I should go, as I was utterly exhausted.

I made arrangements before I left, just in case, and shared them with my eldest son, the nursing home and doctor. In fact, mum lasted a few more months. Rather than being in shock, we had organised a quiet family service, with just immediate family as this was what she wanted.

I remembered that on the way home from dad's funeral, she had said she wanted "Lord of the Dance" played at her funeral, which we arranged. It was much more of a celebration of her life than a shocking end.
Hi Guys,

It must have been a while since I posted- Gran moved into a nursing home at the end of June this year, so that's where she is currently (though, she said to me last week she wants to move to a hospice when things 'get really bad', as she put it).
I managed to catch the head nurse at the home last night during my visit and she provided me with some good information as to what will happen (whether or not that actually happens is another story- their track record of looking after her properly isn't great (hence my 'need' to be there every day to sort her out properly).
I am worried that correct procedures won't be followed (to put it a bit more into perspective, I saw the manager of the home last night for the first time since the initial home assessment, way back in June- even then, it was only because she was handing out a 'friends and relatives' survey. Otherwise, I never see her in or around the home at all (hence my lack of complaints up to this point).
Sound advice from BB. My mother was offered hospice at home or in a hospice. She spent 17 days in a hospice where she had 24/7 care.

One thing I did find was she was originally in a private room but couldn't always get attention from the nurses when she needed them. She was then transferred to a bright and airy room with up to three other ladies. There was more activity and the other ladies were able to keep an eye on mum and call a nurse if needed.
BB- Sorry, I must have skimmed by a lot of what you said and didn't answer you properly!

I made funeral arrangements in September, at Gran's request- everything bar a couple of details have been written down and arranged with the funeral director. Gran has the funds ready to pay for the funeral herself (I think it was the one thing she wanted to do for herself). I do need to speak to the Home for them to write down which director we'll be using when the time comes so that it can be written into the Care Plan.
Been on the other side of that, with a sudden death in the family, and you're right- it's horrendous trying to get everything done 'on the fly', so I'm glad that side of things is sorted and all prepared.

Rosemary- That's the issue we will be facing, regarding the not being able to get the attention of staff thing. As Gran's arms will become paralysed, she will not be able to hit the buzzer to call for help/assistance. Maybe, if you had the same experience in a hospice, it's not worth Gran moving from the nursing home to a hospice then? Time will tell, I suppose. I've got horrible images in my head of the 'inevitable' happening at Christmas, which would just be absolutely awful :(
Gran and I are normally Christmas-Crazy- this year, neither of us are looking forward to it at all :(
Broostine93 wrote:
Thu Nov 14, 2019 12:14 pm
BB- Sorry, I must have skimmed by a lot of what you said and didn't answer you properly!

I made funeral arrangements in September, at Gran's request- everything bar a couple of details have been written down and arranged with the funeral director. Gran has the funds ready to pay for the funeral herself (I think it was the one thing she wanted to do for herself). I do need to speak to the Home for them to write down which director we'll be using when the time comes so that it can be written into the Care Plan.
Been on the other side of that, with a sudden death in the family, and you're right- it's horrendous trying to get everything done 'on the fly', so I'm glad that side of things is sorted and all prepared.

Rosemary- That's the issue we will be facing, regarding the not being able to get the attention of staff thing. As Gran's arms will become paralysed, she will not be able to hit the buzzer to call for help/assistance. Maybe, if you had the same experience in a hospice, it's not worth Gran moving from the nursing home to a hospice then? Time will tell, I suppose. I've got horrible images in my head of the 'inevitable' happening at Christmas, which would just be absolutely awful :(
Gran and I are normally Christmas-Crazy- this year, neither of us are looking forward to it at all :(
What about a low key Christmas tea? This year again we are having a no fuss Christmas tea/dinner the full works. For lunch, we are not preparing much in terms of food apart from Yulelog cake and yummy turkey sandwiches. If you do not have time, you can order Christmas food. I am ordering our Christmas meal from Sainsburys again this year. What are your Christmas plans?
My mum was at home/hospital before going to hospice. She never was in a nursing home so I have no experience of those. Once I complained and mum was transferred into the larger 4-bed room, she got the care she needed. Much more foot traffic although it was much more tranquil than a hospital bay. The hospice had the best knowledge and syringe pumps for pain relief. (She had cancer and infection.)

There was also a sort of baby monitor in the single room, supposedly the nurses station could pick up any calls for help.

I think mum was in the best place for her, treatment wise.