Decrease in eating and drinking

[Selinacroft]

I'm just wondering if anyone is happy to share their experiences in time scales of decline in eating habits. Dad has been up and down with eating but now it seems the care home are helping him to eat and by what I can see a softish food diet, not liquidised but nothing too challenging. Getting through a meal of soup, dinner and dessert can take over an hour , but he is still finishing it off - when he is awake.
What sort of timescales are typical between soft food intake, reduced appetite and finally not wanting any food ?.

Once again, apologies if this seems out of place in EOL thread but some days he has just been asleep, hard to rouse, and he has had periods of very little fluid and food.

 

[love.dad.but..]

Dad's appetite and interest in eating declined over 6 months however he was always difficult to be kept sitting down long enough before he wandered off. He was still able to eat solid food so never reached the pureed stage but the couple of months before end of life he was bot eating much at all. And his sleeping increased and it was difficult sometimes to wake him for food or often he would fall asleep mid meal or after 2 mouthfuls refuse any more. I really felt this was part of the illness decline in his brain not recognising the need or want of food and not understanding the what and why. Then at end of life the last few weeks...I think LadyA described very well the not wanting to eat or drink as the body shuts down ...as a person is naturally trying to die rather than not eating but trying to live. Sorry she probably had better words. I definitely thought that as I watched dad.

 

[lemonjuice]

With my mother it was nigh on 5 years, when she started needing feeding and progressed rapidly to the 'mashed food' diet. The NH Home was very good and every meal for the past 5 years would take between 30-45 mins progressing to 45 min to an hour about 3 years ago. It was about 18 months when her appetite started seriously falling off because she couldn't always stay awake and with her compromised swallow they couldn't always take the more time to wait for her to be awake.
Even when it was obvious that my other was declining and didn't want to eat, i had quite a few runins with the Home about letting her 'not eat' if she didn't want it. The NH was very dismissive and accused me of trying to hasten my mother's demise and so even right till that last week they were thickening her liquids to ensure she was adequately hydrated. 'Encouraging nutrition and hydration' was what thye called it in her notes. To my mind it resembled more force-feeding- because they knew she was self-funding.

 

[Selinacroft]

Thanks Love.dad.but, Dad has had several times when he is eating very little and I have thought he is winding down. He's had days when he nods off as he is chewing or in between trying to feed himself. He has had times when he has refused to eat and then you find him eating his way through a 3 course meal albeit slowly.
Lemonjuice, I truly feel for you , have you any tips with hindsight on "managing" the attitude of the care home. I have been in a couple of times this week to see dad awake(ish) and being fed , the staff proudly tell me how he has managed all his dinner and lunch. He then falls asleep again or spouts a bit of gibberish. He's stuck in bed with full bed rails to stop him falling and I think the nurse in charge at the home already has me flagged up as a "mad axe woman" because I requested no antibiotics. Did you consider changing care homes?
I'm also (as dad's sole carer for last 9 years family wise) finding myself being wound up by other members of the family "trying not to give dad a cold". What planet are they on?
Sorry apologies if my post offends anyone but I know spouting off on here some of you will be on my wavelength.

 

[ossettbob]

My Sil is in similar situation. She is virtually bed-ridden now & they try to get her to eat mashed food which she spits out. She also drinks very little of the supplemented drinks. My wife asks them why they virtually force her but, as said, they come out with the hydration bit. A few might disagree with lemonjuice comment above but we think same...she is self funding at over £1000.00 a week !!!.

 

[lemonjuice]

Did you consider changing care homes?

I did, but trying to find a NH able to cope with someone in sever dementia with no speech and no comprehension where we live is not easy. " other possible Homes were owned by the same people, a friend had her mother in another and I knew that was similar, so I decided to stay with at least carers who knew her.

I think the nurse in charge at the home already has me flagged up as a "mad axe woman" because I requested no antibiotics.

So often people just 'don't get it'. My mother had watched both sister and sister-in-law survive to the very advanced stages of dementia and used to say, "I wouldn't wish that on my worst enemy.", so I was well aware of her feelings on the matter.

other members of the family "trying not to give dad a cold". What planet are they on?

Yes I often thought, well at least a cold which developed complications might be a speedy end to her suffering.

 

[malengwa]

Mum went from eating everything put in front if her 6 months ago to barely eating 3 months ago, until her passing a couple of weeks ago. So very short time, but mum had other health things going on, lung cancer, urosepsis I think they both hstened her condition dramatically.

 

[jelba]

My mum is the same now only drinks a little and eats about 500 calories a day now that social services have stepped in to make it worse now we can't give mum drink only carer's can

 

[Raggedrobin]

Is that to make sure she doesn't choke, Jelba?
My Mum has been on a pureed diet for maybe 9 months, maybe it's a year, since she started having a bit of trouble swallowing. In the last 6 months she is also on thickened drinks, which is normal for people with swallow problems.
She has had phases of not eating hardly anything and then she has rallied and it has turned out there has usually been some other problem such as a uti or constipation that had affected her.
However now I think we really are heading towards the end, she is esting just a few teaspoons a day and anfew sips most of the time. So in my case I would say about a year from feeding problems to the stage we are at now.

I think we all wish there was a prescribed amount of time for these stages but there just isn't. I found the rollercoaster was Mum stopping eating and me preparing myself for the worst and then she would start again and be fine.

 

[Selinacroft]

Malengwa, Sorry to read of your loss and thanks for sharing your experience of this difficult time. Jelba, now Dad is in care I'm finding it hard to know exactly what Dad is eating. i can be there at lunch time and see the nurses try and feed dad and see dad refuse, but they wander off and tell me they will try again later .
Raggedrobin, just read your other thread "last Christmas" to see what you are going through so sending you wishes for a peaceful "last Christmas". Dad is younger in his 90s and also had a period of being completely off food, but last time he was admitted to hospital for a weekend and seemed to come home hungry.
I'm not sure they have tried pureed food -not in my presence so perhaps Dad has further to go than I am imagining. He has exhibited many of the EOL signs, loosing appetite and desire to drink, delerious, constantly pulling at blankets and reaching out, being semicomatose, sleeping for long periods, being wakeful at night , loosing weight but never all at the same time and he rallies between each one. He's mostly babbling rubbish but there is the occasional phrase that he says that makes sense and is understandable.

 

[Witzend]

More than once in my mother's care home I have seen someone very elderly, with pretty advanced dementia,being badgered and pestered to eat and drink when they no,longer want to. Not to mention the fortified drinks - to keep such a person going - for what??

If such a person no longer wants to eat or drink, then as far as I can see they should be allowed that choice. I have seen one poor lady crying and whimpering and repeatedly turning her head away, but still the coaxing and badgering went on and on and on.
To me, however well meant, that is verging on abuse.

 

[realist1234]

Malengwa, Sorry to read of your loss and thanks for sharing your experience of this difficult time. Jelba, now Dad is in care I'm finding it hard to know exactly what Dad is eating. i can be there at lunch time and see the nurses try and feed dad and see dad refuse, but they wander off and tell me they will try again later .
Raggedrobin, just read your other thread "last Christmas" to see what you are going through so sending you wishes for a peaceful "last Christmas". Dad is younger in his 90s and also had a period of being completely off food, but last time he was admitted to hospital for a weekend and seemed to come home hungry.
I'm not sure they have tried pureed food -not in my presence so perhaps Dad has further to go than I am imagining. He has exhibited many of the EOL signs, loosing appetite and desire to drink, delerious, constantly pulling at blankets and reaching out, being semicomatose, sleeping for long periods, being wakeful at night , loosing weight but never all at the same time and he rallies between each one. He's mostly babbling rubbish but there is the occasional phrase that he says that makes sense and is understandable.

Its a very difficult situation. My Mum's appetite was up and down over a 2-year period, but in what turned out to be her last few months, it went really down. At one point the nurse manager asked to speak to me and she said she thought our mum was going into the last stages (she had Alzheimer's) as she was hardly eating or drinking each day. Within a few weeks of that conversation, she passed away. That was last April. I still think about her every day.

I just wondered if you or another family member had tried feeding your dad? The NH should be flexible about it. In her last few weeks our mum was a little more open to us helping her, though I think we just helped a little.

 

[Selinacroft]

Hi realist
Thanks for taking ttime to reply but sadly dad passed away on Boxing Day. He was only in the care home about 3 weeks and had been struggling with eating and already been discharged from the special diet team (as a lost cause) even before he went into respite care. I think He stopped eating drinking much at all for the last week and really just faded away. There had been a lot of encouragement from myself at home, softer foods etc for the 6 months or so prior to the end.

 

[realist1234]

Hi realist
Thanks for taking ttime to reply but sadly dad passed away on Boxing Day. He was only in the care home about 3 weeks and had been struggling with eating and already been discharged from the special diet team (as a lost cause) even before he went into respite care. I think He stopped eating drinking much at all for the last week and really just faded away. There had been a lot of encouragement from myself at home, softer foods etc for the 6 months or so prior to the end.

Hi Selina - very sorry to hear about your dad. Hopefully with more research the medical profession will be able to do something about this terrible disease.

All the best.

Peter

 

[malengwa]

Hi selinacroft, sorry to hear your news, and wishing you strength at this time. My mum was only in a nursring home for 5 weeks, after it had taken so long to find somewhere we liked with a vacancy. She also faded away but I was relieved it was fairly quick. I miss her loads, and find some days harder than others. I hope you are taking care of yourself and have family or friends around you?

 

[Selinacroft]

Thanks Malengwa,
Keeping busy with work, Dad was really my main family so mostly just me and hairy dog now.
Trying to find a balance now between being there for my dog and earning enough to keep going.

 

[Thomson]

Hi I have my father at home with me he is very frail probably weight's less than 5 stone but I continue to feed him a pureed diet most of the time he says no more after a few spoonfuls but I continue to coax him as I know if he doesn't eat I will lose him a lot quicker and even after 2 years on constant caring for him (he has mixed dementia ) I'm not ready to let go am I being selfish?

 

[Selinacroft]

Hi Thomson, sorry you are in this position. I don't suppose there is no right or wrong thing to do, when Dad was ready to go he started choking on his medication and his swallowing went at which point I think is the time to start accepting the inevitable.
It is truly amazing how little someone needs to survive on, when there is no other illness in the mix it is even more of a dilemma. My dad had mulitiple co morbidities in hospital speak and I was glad his sufferering is over.