End Of Life?

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 End of life care - NHS
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 :frowning:
Gran and I are normally Christmas-Crazy- this year, neither of us are looking forward to it at all :frowning:

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.

PS. The hospice had remarkably good food, and a chef who would visit the patients to ask what they needed. Also good for visitors. Just a shame mum couldn’t enjoy much.

Does she have a will or not? There are will writing companies. Start making plans and preparations now for her future. I hope the articles helped. Can you move her to another local care home that is better or not? Does she live alone?

Hi Thara,

Ref your comment about Christmas food- Gran is on a pureed diet (and barely eating any of that due to severe dysphagia). Unfortunately, it means we can’t share any meals together anymore. Nice thought, though.
The will was written up when Gran was first diagnosed with MND- she is in a nursing home now, so does not live alone. Funeral has also been planned. Because there is so little knowledge about MND, there aren’t any care homes that specialise in it, not have staff that are knowledgeable about it (I am assuming this is why most MND patients are cared for at home by their spouses/children).
Rosemary- The baby monitor thing sounds ideal. I wish there was something like that for Gran. It may be necessary towards the end, as her arms fail, due to her not being able to press the call buzzer. I may suggest it to the home to see what they think, thank you.

I had a phone call yesterday from the MND palliative nurse- she’s coming out to talk to me in a couple of weeks to discuss the end-of-life plan. I am glad I’ll be able to express my concerns to her regarding the Home’s management of the delicate time to come.

Sorry to say that mum rarely called out loudly enough. I’d like to think that the nursing home or hospice would be aware of your gran’s condition and act accordingly. xxx

Unfortunately, not really the case. I have to go nearly every day (usually, except Mondays and Fridays because Gran’s sister usually goes up those days to ‘take my place’) to make sure Gran is comfortable. The staff are so busy that they do not make sure that Gran’s limbs and pillows are correctly positioned (her nighty is usually bunched up under her backside, too), before they leave the room.
This means I am basically doing their job for them (I am a bit narked at the moment because Gran’s sister has just decided not to bother going today, meaning that I now have to go up after work on the one evening I had actually made some plans).

But yes- I have tried several methods to get the staff to ensure Gran is comfortable before they leave the room- everything falls on deaf ears I even wrote out simple instructions and stuck them on the wall next to Gran’s bed at one point, for a few weeks- they went completely ignored, too

I think this is why I am so anxious about them responding in a timely and correct manner, regarding making her comfortable for end-of-life. I have no confidence in the Home where Gran’s comfort is concerned. Heck- they serve soup that is powdered and Gran chokes on it in front of me nearly every time I visit- none of the staff have cared, even after the speech therapist intervened to try and get tinned soup only. They’ve just carried on as normal.

Hope that explains the situation a little clearer.

Sorry to hear that. Actually I had to raise a safeguarding case against hospice (!) and that did get their attention. Hospice did not have access to mum’s medical records. They thought they would try mum without a catheter after it had become blocked. It wasn’t long before mum’s bladder was full to bursting. I was livid and told them to put a new catheter in. Hospice didn’t know mum’s history and wanted to see what happened! Quite sad because their chief consultant was also a consultant at the hospital that had inserted it. That, along with mum’s cries going unnoticed led to my safeguarding case against the hospice. Thereafter the staff were all over mum, like white on rice!!

This is the first time I’ve mentioned this safeguarding case. Mum had gone straight from hospital to hospice, but the hospice had only brief discharge note from the hospital. When asked about this, the hospice doctor said " We don’t know and we don’t care. We only treat the symptoms here. ". That came as a shock to me. But that is the blunt reality.

Even with that experience, I still believe that mum was still the best place in hospice, rather than at home.

Just rereading your issue with powdered soup. One day at hospice I watched an assistant try to feed mum soup. Mum was half propped up and on her side with mouth facing downwards. No surprise, mum wasn’t eating. I took over, repositioned mum and sure enough, she ate the soup and some sponge pudding with custard and said she enjoyed it. (Per response from my safeguarding case, the staff was going to be retrained on feeding the patients!)

Broostine, have you made your own plan for your future when caring is over?

I found that I fell over a “Cliff of Tiredness” after my own mum passed away.
As carers we just keep plodding on even as the path gets progressively harder, and harder.
Whilst having a caree in hospital or nursing home is seen by some as the caring role being over, it isn’t, far from it. It just brings a different set of challenges!

I had a holiday booked towards the end of mum’s life, and the GP ordered me to go, whatever happened, to protect my own health.
Clearly your situation is different, but I would urge you to plan to go away somewhere, even if it’s just for a few days. Just getting away from it all for a few days - even just an hour’s drive away can be enough - can be helpful.
I found small self catering annexes were better than B&B, as I could get up when I wanted, go to bed when I wanted.
The first time I went away, I got up about 7am, had tea and toast and went back to bed with a book until almost midday, I was so exhausted.
Just bear this in mind.
Is your employer aware of the situation, and the requirement to “make reasonable adjustments” for you, as you are “disabled by association”?

Yes, BB, caring isn’t over when caree is away from home. Different challenges exist where you would least expect them. Even if all is fine, it’s still exhausting going to visit each day.

My mum was either in Bournemouth or Southampton, she lived mid way between them. 20miles either way for me.
Both had parking nightmares, even when I had a Blue Badge it would take up to 30 minutes to find a space.
Once I’d found a space it was a quarter mile down the corridor to the ward. No kidding.
Then there’s the dirty washing I was given, some unpleasant. I’d give the nurses beautifully clean and ironed nighties, then sometimes I’d find them in mum’s locker next to dirty nighties not in a plastic bag.
Then there’s the hanging around to see someone, or wait while someone in the ward had a problem. Then the battles with the Discharge Nurses.
Mum had some mega long admissions, one went from December to May, another from May to the following January. Ultimately it was agreed she was far too frail to live at home even with a live in carer. Strangely not ill enough for Continuing Healthcare.
I’m so glad that time of my life is over.