Concern about advice not to hydrate.

Cirrus777

Registered User
Sep 11, 2016
7
0
Somerset
Hi, My mother appears to be in the end stages of the illness. She has been in a specialist dementia/ psychiatric hospital for the last couple of months. She was recently taken into hospital and given a saline solution drip as she was dehydrated from difficulty swallowing. I met with a doctor who has advised against further hydration drips, I think due to her poor quality of life and because they said it caused a lot of distress taking her to hospital. She still walks around but needs help or she falls. I can understand not prolonging suffering by artificially feeding or hydrating someone if they don't appear to want it, but what if someone wants liquid but is unable to swallow? I can't think of much worse than starving someone of liquid. Can someone explain why this is being advised? I am a long way from the dementia hospital and can't visit as often as I'd like to.
 

MrCanuck

Registered User
Jun 9, 2016
59
0
Ontario, Canada
Generally at this "end of life" period there are palliative care options available to ease someone through the final stages. My mother went into palliative care where she was no longer hydrated which is common. She was kept comfortable and closely watched for any pain etc. It was a difficult 7 days for me, but she passed peacefully and at that stage that was all that really mattered.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @Cirrus777
you are clearly concerned about this, and although members may have ideas, none of us knows the particulars of your mum's situation, so may be wise to put your concerns to the staff caring for your mum and to the doctor as you need your mind set to rest
 

Cirrus777

Registered User
Sep 11, 2016
7
0
Somerset
Hi, thanks for your replies. Mr Canuck - You say she was no longer hydrated, but kept comfortable. That's the bit I struggle to understand? Shedreck, I thought this forum is here for people to share experiences and give advice to those who need it? Ideas are alright and people can ask if they need to know anything else about my mum's situation. I have an illness that makes it difficult to read and concentrate so can't read many previous posts. I can ask staff caring for my mum but they are in a psychiatric hospital and may not have that kind of knowledge. I have a discharge meeting monday. The Doctor I spoke to was foreign and difficult to understand. It would be helpful to have other points of view and comments from anyone else who has experience of this.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Hello @Cirrus777

I don't know, but I imagine, people at the end of their lives are unable even to try to walk, so don't really understand how fluids could be withheld. Your mother is at the end stages of her illness but is she at the end stages of her life?

I would certainly question the decision to withhold fluids.

The bigger problem is administering the fluids. My husband`s care home was not able to administer or supervise IV fluids and it was only when we agreed to end of life care he was discharged from the hospital to his care home. If he had stayed on IV fluids he would have had to remain in hospital.

My husband had lost all mobility.

I hope this helps.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,332
0
Nottinghamshire
Hello @Cirrus777

My mum was put on a drip, but it distressed her and she used to pull out the tubes ripping her arms in the process. We would often get to the hospital to find mum, and her bed covered in blood. No matter what the nurses tried they could not get her to keep the tubes in. Her arms would be covered in sticky bandage dressings in an attempt to keep her from pulling everything out but she still managed to do so. I imagine this is why your mum is no longer on a drip.

She could still drink at this stage, but never drank enough and was always dehydrated. Like @Grannie G i don't understand the decision to withhold liquids.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,084
0
south-east London
Hi @Cirrus777, my situation is not exactly the same as yours but in my case my husband was in a specialist dementia unit earlier this year, at the end stage of the disease.

He was mobile at first but gradually lost his mobility and more or less withdrew himself from food and drink in stages - though he did want it occasionally and he was encouraged in this, but in the end it was just a teaspoon of food or a sip of water that would keep him going. He was barely mobile at this point, but could weight -bear.

He then developed sepsis and went to A&E. The doctors tried their best but in the end it was decided to remove the drips giving him fluids and antibiotics and let nature take its course.

There was a gel they used which would to keep his lips and the inside his mouth comfortably moisturised for several hours at a time. There were also tiny sponges on a stick which I would dip in water (or sometimes his favourite drink of Irn Bru) and then dab gently in his mouth. The first time I did it, he tried to suck briefly on the sponge but from then on he didn't seem to need it because the gel was keeping him comfortable and he showed no distress of thirst or hunger. He passed away peacefully and comfortably.

That is just my husband 's experience. I personally know of one other person who was taken off fluids and food at the end of her journey. She had limited mobility at that time and, although asleep a lot, she would open her eyes and talk from time to time. This was a good few years ago and I didn't see the gel being used back then - but the sponges on a stick were being used to keep her mouth and lips moist, and again, at no time were there any signs of distress through thirst or hunger.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
Hi @Cirrus777 Do the doctors think that she is at end of life, or just at end stage of dementia? You can be at end stage for many months before reaching end of life.

During the end stage the swallow often starts to go and it becomes difficult to swallow things. This can often be helped by getting things at the right consistency - pureeing food and thickening fluid is usual. Has she been assessed by the SALT (Speech And Language Therapy) team, who are the experts in swallowing problems?

If she is at actual end of life then the body is slowly shutting down and can no longer process food and fluid. This can go on a long time - my mum was without food or fluid for 17 days, but it was not this lack of food/fluid which caused her death - she was dying already. In mums case she was refusing food and fluid during this time, but there is member on here whose mum has recently passed away whose mum said she was thirsty and wanted to drink, but if she drank more than a couple of sips it would make her vomit and cause pain, because her body could not longer process it.

It is also usual for people to become bedbound during this phase, but not always. My mum was up, dressed and in the lounge up until day 14 of her not eating or drinking (ie - 3 days before her death). I have a photo of her during this period where she and her great grandson (7months old) are both banging spoons on the table and laughing. No-one seeing her would realise that she was actively dying at that stage, but she was.

IV fluids have to be given in hospital and they are great if there they suddenly become dehydrated and are expected to recover - like when mum had a TIA. She was still living at home at this point and when she was taken to hospital she was found to be dehydrated and malnourished because she was forgetting to eat and drink. She had IV fluids and when she was better she was transferred to a care home and lived for another 3 years.

At the end of her life, however, when the swallow reflex had completely gone and her body was shutting down, IV fluids wold not have prolonged her life - it would just have extended her death.

I do think that you should go back to the doctor - perhaps ask to see the consultant - and find out whether they think your mum is at end of life or not.
 

Cirrus777

Registered User
Sep 11, 2016
7
0
Somerset
Thanks for replies, they were helpful. I thought because my mum couldn't swallow one day when I saw her, it would continue like that but it is actually variable, and has been made worse by a mouth fungal infection. Unfortunately the Doctor has estimated she has 2 to 3 months left but I have been assured no one will stop her having a drink when she wants it. Canary - yes my mum saw a speech and language therapist and she has been put on a suitable pureed diet and something to thicken drinks. That was quite remarkable about your mum still being able to laugh with her great grandson so close to the end of her life!

Apart from having food shopping and her washing done, my mum could manage living on her own with just a lunch time visit from a carer a year ago. 6 months ago she could walk a couple of miles, and up long steep hills quite easily so she has deteriorated very quickly lately which I wasn't expecting.