Please help.

[Blahblahchar]

Hi,
My nan has been on palliative care for SEVEN years... Yes, you read that right. She was given a few weeks, we said our goodbyes, and she is still here. For that time she has been bed bound, unable to move her arms or legs, unable to speak... Has been spoon fed food and drink (thickened) and needed 24/7 supervision.
5 days ago she developed a cheat infection. The doctors said that we were looking at 24/48 hrs. She hasn't eaten or drank in 5 days. She is currently on morphine and a medicine to dry up the chest - both through a drip. This process has been completely exhausting for the whole family and we are on constant tenterhooks waiting by her side ... Does anyone have any advice or experience in this situation. Do you think she will leave us soon or could we be waiting weeks? I'm severely struggling to cope with the anxiety surrounding it and any help would be very much appreciated. I've looked online but all information about end of life relates to people who have been walking and talking until recently. I've not met anyone who has had the experience my family is having.
Thank you for reading xx

 

[karaokePete]

Hello @Blahblahchar, you are welcome here.

That situation must be terribly upsetting and exhausting for everyone. Unfortunately I can’t give any advice as my understanding is that there isn’t any timeline to this situation. However, I hope that others with some more experience may be able to offer something.

If it would help you to talk to the experts on the help line, the details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[YorkshireLass]

Hi,
My nan has been on palliative care for SEVEN years... Yes, you read that right. She was given a few weeks, we said our goodbyes, and she is still here. For that time she has been bed bound, unable to move her arms or legs, unable to speak... Has been spoon fed food and drink (thickened) and needed 24/7 supervision.
5 days ago she developed a cheat infection. The doctors said that we were looking at 24/48 hrs. She hasn't eaten or drank in 5 days. She is currently on morphine and a medicine to dry up the chest - both through a drip. This process has been completely exhausting for the whole family and we are on constant tenterhooks waiting by her side ... Does anyone have any advice or experience in this situation. Do you think she will leave us soon or could we be waiting weeks? I'm severely struggling to cope with the anxiety surrounding it and any help would be very much appreciated. I've looked online but all information about end of life relates to people who have been walking and talking until recently. I've not met anyone who has had the experience my family is having.
Thank you for reading xx

It's impossible to say but I would think without antibiotic treatment and morphine administration being given things shouldn't go on for much longer. When at this stage my MIL suffered fora further 2 days.but as we all know everyone is different. Thinking of you and sending a hug xx

 

[Baby Bunty]

Hi think off you at this horrific time..my mum been end off life for 6 months. And that as been horrendous.my thoughts and prayers are with you all. Hope the end is peaceful.xxx

 

[Lizzy97]

Dear Blablachar
Your message was in October and I wonder how things are going for you.
My situation is not so different to yours so I was unsure how to respond to your post without really being able to help. My mother was diagnosed with Alzheimer's 14 years ago. I was told then she didn't have long to live and that any additional health issues that might arise would not be investigated or treated, other than to keep her comfortable. This meant that a failed hip replacement tied her to a wheelchair, now her bed. It meant that whenever she had a chest or bladder infection I received a lecture on how she shouldn't really be treated but allowed to naturally go. I found this so stressful. Now she is 95, under palliative care, and still holding on - for reasons only she can know. She is at home. There is no other family interested enough to visit or care. She knows me, can communicate when she feels inclined, Nowadays every nurse and doctor uses every opportunity to tell me she must go. I feel like I am keeping a useless person alive and costing the NHS precious funds. It has worn me out even to the point of having a heart attack in May. I don't feel this is my decision. When she dies is her fate. My job is to keep her comfortable, if I can, during this process. If I try to explain anything to a medical professional I can see that they aren't listening. I have to supress my anger. I know it's not their fault, that they think they are being supportive and helpful even and that I am only one of hundreds that they have to deal with. Your mother was in a home with experienced carers who know what to do. Your job is advocate - to make sure that the care fits her needs. You have done this. Or you are doing it. It is hard to grieve and give care at the same time. It's a long gruelling path. I make sure I do things when possible to cheer myself up - a nice meal, a good film. It helps, for a while.

 

[kindred]

Dear Blablachar
Your message was in October and I wonder how things are going for you.
My situation is not so different to yours so I was unsure how to respond to your post without really being able to help. My mother was diagnosed with Alzheimer's 14 years ago. I was told then she didn't have long to live and that any additional health issues that might arise would not be investigated or treated, other than to keep her comfortable. This meant that a failed hip replacement tied her to a wheelchair, now her bed. It meant that whenever she had a chest or bladder infection I received a lecture on how she shouldn't really be treated but allowed to naturally go. I found this so stressful. Now she is 95, under palliative care, and still holding on - for reasons only she can know. She is at home. There is no other family interested enough to visit or care. She knows me, can communicate when she feels inclined, Nowadays every nurse and doctor uses every opportunity to tell me she must go. I feel like I am keeping a useless person alive and costing the NHS precious funds. It has worn me out even to the point of having a heart attack in May. I don't feel this is my decision. When she dies is her fate. My job is to keep her comfortable, if I can, during this process. If I try to explain anything to a medical professional I can see that they aren't listening. I have to supress my anger. I know it's not their fault, that they think they are being supportive and helpful even and that I am only one of hundreds that they have to deal with. Your mother was in a home with experienced carers who know what to do. Your job is advocate - to make sure that the care fits her needs. You have done this. Or you are doing it. It is hard to grieve and give care at the same time. It's a long gruelling path. I make sure I do things when possible to cheer myself up - a nice meal, a good film. It helps, for a while.

Lizzy, I am so sorry you are going through this and completely honour what you have done and are doing. I think it is a reflection of our society partly, the wayyou have been treated. You are acting with great integrity and honour at a terrible cost to yourself. Please keep talking to us. with warmest wishes, Kindred.

 

[Ray96]

Dear Blablachar
Your message was in October and I wonder how things are going for you.
My situation is not so different to yours so I was unsure how to respond to your post without really being able to help. My mother was diagnosed with Alzheimer's 14 years ago. I was told then she didn't have long to live and that any additional health issues that might arise would not be investigated or treated, other than to keep her comfortable. This meant that a failed hip replacement tied her to a wheelchair, now her bed. It meant that whenever she had a chest or bladder infection I received a lecture on how she shouldn't really be treated but allowed to naturally go. I found this so stressful. Now she is 95, under palliative care, and still holding on - for reasons only she can know. She is at home. There is no other family interested enough to visit or care. She knows me, can communicate when she feels inclined, Nowadays every nurse and doctor uses every opportunity to tell me she must go. I feel like I am keeping a useless person alive and costing the NHS precious funds. It has worn me out even to the point of having a heart attack in May. I don't feel this is my decision. When she dies is her fate. My job is to keep her comfortable, if I can, during this process. If I try to explain anything to a medical professional I can see that they aren't listening. I have to supress my anger. I know it's not their fault, that they think they are being supportive and helpful even and that I am only one of hundreds that they have to deal with. Your mother was in a home with experienced carers who know what to do. Your job is advocate - to make sure that the care fits her needs. You have done this. Or you are doing it. It is hard to grieve and give care at the same time. It's a long gruelling path. I make sure I do things when possible to cheer myself up - a nice meal, a good film. It helps, for a while.

Hi Lizzy
The doctors have started all that with me now too, mum came out of hospital almost three weeks ago, Kidneys very bad I was told and her Lymphoma is back, well she has had that on and off for years anyway. I was informed that she will have palliative care from now on and they keep on about the DNR that I have set up. Her GP is also keen to see her go it would appear but when she comes to do a home visit mums blood pressure is normal and she can't find anything seriously wrong, she said the other day that she might go in her sleep. Mum is bed ridden and incontinent now, but they have sent a hoist and reclining chair from social services so carers may start getting her up again from next week, we get 4 calls a day now from carers. Anyway its all been very distressing I must say.

She was eating and drinking very little in hospital and refusing her medication at times, but this has all miraculously changed since she got home, this last week in particular she has done really well with fluids and liquid food, shakes, soup, ensure and has perked up a lot. Hospice contacted me last week and got a letter but they are not planning to visit until I call them for help.

Seriously thought it was all over myself and I was on the verge on planning the funeral a few times in the last 3 months but now I don't know what to think any more. They keep saying to keep mum comfortable but are they trying to say that mum can't have any more treatment, is that it? Maybe I should ask about that.

 

[canary]

Hi @Ray96
Im so sorry to hear about your mum. Its a terrible roller coaster isnt it? I was told 3 times that mum would not survive, but she bounced back - it seems to happen a lot with dementia.

They keep saying to keep mum comfortable but are they trying to say that mum can't have any more treatment, is that it?

You said earlier on in your post that your mum was on palliative care and that is exactly what palliative care means - no more treatment, but to be kept painfree and comfortable. This can go on for quite a while, though, so it doesnt necessarily mean that she will pass away imminently. There is just no knowing with dementia.

 

[Ray96]

Hi @Ray96
Im so sorry to hear about your mum. Its a terrible roller coaster isnt it? I was told 3 times that mum would not survive, but she bounced back - it seems to happen a lot with dementia.

You said earlier on in your post that your mum was on palliative care and that is exactly what palliative care means - no more treatment, but to be kept painfree and comfortable. This can go on for quite a while, though, so it doesnt necessarily mean that she will pass away imminently. There is just no knowing with dementia.

Hi Canary
Yes it's tough alright, constant ups and downs, the worst part was when she was eating and drinking hardly anything, this is probably what effected her kidneys, she has done this a few times in the last four months, in fact I decided to keep her at home with me mainly so that I can try with lots of patience and perseverance to get her eating and drinking again, well it has worked, for now anyway, only liquid foods, water, ensure, but she can take as much as 2L now on some days which is a minor miracle. It was pretty obvious when that in hospital they didn't have to time to do this, they just put down refused, so I went in every day but it was hard work, think she may have been suffering from delirium.

Although she is under the hospice, do they still give out things like antibiotics I was thinking to myself, say she gets a urine or chest infection during the winter?

 

[canary]

When mum was at that stage they would give anti-biotics by mouth, but they wouldnt take her into hospital to give IV anti-biotics. When people with dementia get to end of life their body starts to shut down and they stop eating and drinking because their body no longer needs it and cannot process it any longer. TBH, it sounds like your mum (like my mum) is beginning to reach that stage. although how long this will take is impossible to know. I wanted to tell you this now, so that when the time comes you do not think that she is dying because she is not eating/drinking - actually it will be because she is already dying that she will stop eating.

As she has gone back to eating and drinking again, you might want to go back to the doctor and talk about preferences to do with what happens if she gets an infection, or breaks a bone, or anything else. The decision to stop heroic efforts to try to keep them alive is a very, very hard one. I wanted mums passing to be peaceful, cared for by people she knew in familiar surroundings and not keep being taken into hospital - and that is what happened. I do not regret my choices not to take her to hospital or treat her with drips etc at the end.