Is this usual in later stages?

Cookie60

New member
Apr 1, 2019
3
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Mum was diagnosed with dementia 7yrs ago. We managed to keep her at home for 5ys but poor health and a heart attack left her totally bed ridden 2ys ago. After this attack and the dramatic weight loss that followed Mums weight had remained stable. The home that Mum is in could not be a more caring place, filled with wonderful staff but despite this she has started to loose weight again. The staff weigh her every week and have told me she has now dipped below 6 stone. Is this usual?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
I`m not sure if it`s usual but I do know it happens to many who are in the later stages.

Poor health and a much smaller appetite is often the cause. It does sound as if the care home staff are being vigilant and as long as your mother remains comfortable and pain free I doubt there`s much more they can do.

Welcome to the forum. :)
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Cookie60
a warm welcome from me too
I'm not sure if anything is usual exactly, but my dad was clearly losing weight before he passed away - he'd always had a good appetite and enjoyed his food so I wonder now whether his body was less able to process his food
it's good that the staff are monitoring and letting you know - as you clearly have a good relationship with the carers, maybe have a chat with them to settle your mind
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Both of my in-laws and my mum had dementia and all of them lost weight once they got to the late stage, so I do think it is very common.
Unfortunately, there is not much you can do about it apart from encouraging them to eat and perhaps some food supplements (like ensure). It sounds like the care home is on the ball over it.
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Hello & welcome to the forum, it does seem very usual that as the PWD enters the later stages of dementia that their appetite decreases.
My mum always had a healthy appetite but then would forget she had eaten at times but her appetite decreased & in hospital for her final few weeks then she did not want to eat at all.
 

Cookie60

New member
Apr 1, 2019
3
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Thank you Shedrech, The care team are very good, I do try to talk to them but they appear to be very nervous ref anything that could be seen as an opinion on what's gong on. I completely understand this. Maybe the next step is seeing Mums Dr.
 
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Cookie60

New member
Apr 1, 2019
3
0
Thank you all for the warm welcome and thoughts. Don't feel quite so alone now. My family are amazing, but its not always easy to voIce my fears. Mums appetite hasnt changed in the last year, so I think it must be a progression of the dementia.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
My Mum was diagnosed with Alzheimers 2013, and has been in a care home since mid 2016.
Weve had periods of her not eating, or off her food, loses a few kgs, bounces back & regains the weight.
Since July last year Mum has had shingles, 2 UTI’s and a chest infection. Since Dec shes lost her mobility, very poor appetite ( shes been on Fortasip drinks for a year) and with weight loss removed her teeth, so on mashed/pureed foods. Anything semi solid she would spit out.
Mum has lost 14kgs since Dec.
She was moved from Dementia level to Hospital level 8 weeks ago.
Her appetite has picked up a little and has put on 1kg in last 3 weeks.
 

Moggymad

Registered User
May 12, 2017
1,314
0
My mum is in late stage & also losing weight but the rate of loss has slowed now. She has a mostly puréed diet which she likes thankfully. It has a fairly high fat content to try to help maintain her weight with increasing calories. So far seems to be working.
 

Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
My Mum was diagnosed with Alzheimers 2013, and has been in a care home since mid 2016.
Weve had periods of her not eating, or off her food, loses a few kgs, bounces back & regains the weight.
Since July last year Mum has had shingles, 2 UTI’s and a chest infection. Since Dec shes lost her mobility, very poor appetite ( shes been on Fortasip drinks for a year) and with weight loss removed her teeth, so on mashed/pureed foods. Anything semi solid she would spit out.
Mum has lost 14kgs since Dec.
She was moved from Dementia level to Hospital level 8 weeks ago.
Her appetite has picked up a little and has put on 1kg in last 3 weeks.
Hello again , been a bit of a busy week, mum is moving on Monday to NH as CH said they were no longer able to meet her care needs . Bedridden , not eating much at all , sleeping all the time ....palliative care assessed and end of life pack in place . Every day I’ve been and she’s fast asleep even a Hoover doesn’t wake her , however today awake had been fed two bowls porridge most eaten in weeks , trying to converse but very agitated which was distressing as mums not spoken in months so to hear her worrying words was tough . I initially thought ok she’s picking up but I’ve since heard that this is likely a rally before next decline . Any wise friends on this journey have advice x
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
@Moose1966

Hi. I’m just at a loss for words.
Have gone from expecting a call at any minute between Jan & Feb, and about to organise Mums funeral to now Mum alert, talking ( as she can) responding more and eating even a peice or two of cake.
Mum has refused all solid foods since January just mashed or pureed.
After nearly 4 months of being immobile and either in bed or in a wheeled lazy boy, pulled herself from lying to sitting on the edge of her bed.... although about to topple over.
Mums medication is now at a bare minimum. It used to be that lowering her Quetiapine before would make her very agitated and aggressive.
She actually seems calmer in Nursing care rather than Dementia care.
Her skin though is starting to develop skin tears and a bit of bruising.
Today when visiting she actually recognised me and said my name. First time in almost 4 months :eek:
 
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Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
@Moose1966

Hi. I’m just at a loss for words.
Have gone from expecting a call at any minute between Jan & Feb, and about to organise Mums funeral to now Mum alert, talking ( as she can) responding more and eating even a peice or two of cake.
Mum has refused all solid foods since January just mashed or pureed.
After nearly 4 months of being immobile and either in bed or in a wheeled lazy boy, pulled herself from lying to sitting on the edge of her bed.... although about to topple over.
Mums medication is now at a bare minimum. It used to be that lowering her Quetiapine before would make her very agitated and aggressive.
She actually seems calmer in Nursing care rather than Dementia care.
Her skin though is starting to develop skin tears and a bit of bruising.
Today when visiting she actually recognised me and said my name. First time in almost 4 months :eek:
Yet again we are on a similar path , my head is absolutely muddled like you I had begun planning funeral ideas and listing people to contact etc . Feeling sick 24/7 is now the normal it’s hard trying to carry on with such a big weight on shoulders , I have to admit I take myself to bed as soon as I can , I don’t sleep well but at least my bed is my sanctuary. I feel guilty for being frustrated at her up and downs ! Lots of big sighs, some of relief some of sheer fright at what’s next . Thinking of you a lot at this point in our journey ❤️
 

Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
Yet again we are on a similar path , my head is absolutely muddled like you I had begun planning funeral ideas and listing people to contact etc . Feeling sick 24/7 is now the normal it’s hard trying to carry on with such a big weight on shoulders , I have to admit I take myself to bed as soon as I can , I don’t sleep well but at least my bed is my sanctuary. I feel guilty for being frustrated at her up and downs ! Lots of big sighs, some of relief some of sheer fright at what’s next . Thinking of you a lot at this point in our journey ❤️
Mum being moved on Monday , ambulance to transfer will take about an hour journey ! I don’t know whether to travel with or leave the experts and be waiting at new nursing home . She hadn’t been out of current CH in 2 years
 

TEUP

New member
Sep 27, 2017
3
0
Yet again we are on a similar path , my head is absolutely muddled like you I had begun planning funeral ideas and listing people to contact etc . Feeling sick 24/7 is now the normal it’s hard trying to carry on with such a big weight on shoulders , I have to admit I take myself to bed as soon as I can , I don’t sleep well but at least my bed is my sanctuary. I feel guilty for being frustrated at her up and downs ! Lots of big sighs, some of relief some of sheer fright at what’s next . Thinking of you a lot at this point in our journey ❤️
 

TEUP

New member
Sep 27, 2017
3
0
The roller coaster we are on with my mum is horrendous. She has been in a Nhome for 18months, had dementia for over 5years . She was sent back to the home from hospital after another severe stroke on fast track palliative care . She ralllys round and we dont know what situation we are going to find every day . The up and downs are very stressful . She is bed bound , can't speak , she can eat pureed food and can have thickened drink by teaspoon , she cant feed herself , she is chewing on her bed covers all the time or staring out ? She can bite people if they put their fingers to near her mouth . Its like she has gone mad , I know that's a terrible thing to say and just adds to the quilt and frustration I feel every day. I have just lost my husband after a long terrible illness which I nursed him at home and also have a 34 year old son who has severe learning disabilities who I care for at home , so quilt is my middle name . Thanks for the opportunity to let off steam
 

Moose1966

Registered User
Feb 10, 2017
147
0
Staffordshire
The roller coaster we are on with my mum is horrendous. She has been in a Nhome for 18months, had dementia for over 5years . She was sent back to the home from hospital after another severe stroke on fast track palliative care . She ralllys round and we dont know what situation we are going to find every day . The up and downs are very stressful . She is bed bound , can't speak , she can eat pureed food and can have thickened drink by teaspoon , she cant feed herself , she is chewing on her bed covers all the time or staring out ? She can bite people if they put their fingers to near her mouth . Its like she has gone mad , I know that's a terrible thing to say and just adds to the quilt and frustration I feel every day. I have just lost my husband after a long terrible illness which I nursed him at home and also have a 34 year old son who has severe learning disabilities who I care for at home , so quilt is my middle name . Thanks for the opportunity to let off steam
Oh my you have so much to deal with , sorry for your recent loss . I haven’t posted for a bit as it’s been that Rollercoaster again , since the fast track move recommended by palliative nurse mums been the same , not eating , bedridden now for six months , legs both contracted so unable to sit in chair etc . Then Friday of last week looking brighter, chatting ( although no idea what she’s saying ) the NH have commented that’s she’s more alert , being fed meals and eating small amounts . Where are we now I ask ? So far three days of good visiting as I call it but I’m expecting to go next day and weak and sleeping again . Prior to this rally her notes said very sleepy for days then she peeks up . Like you it’s tough and I don’t think family and friends get it one day you’re crying then the next your saying oh wow she was chatting today , I’m sure they get fed up wondering how to reassure you , this forum is a great help please continue to touch base with me and others on here . Good luck and yes seek sanctuary in quilt when possible .
 

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