Rapid decline.. what to expect?

[Linbrusco]

Mum has been in care 2.5 yrs with Alzheimers. Diagnosed 6 yrs ago.
Although shes had a steady decline over the past year, in the last 4 months after having shingles in her upper chest area, we have had two instances now where Mum cannot stand, walk, turn over in bed. Shes had blood tests, Xray, treated for UTI in case, pain relief. This lasts about 2 weeks and then she starts walking again.
After this most recent episode her walking is now much slower, she is stooped, talking less, and just sits and watches around her. She will say 4-5 word sentences now and again.
Still laughs on occasion and her overall mood is still OK.

However she is rapidly losing weight- 11lbs in last month.
She will no longer wear her false teeth. Twice shes taken them out and refused them back in for a week or more at a time.
GP has managed to check her mouth and gums.
Mum has been on food supplement drinks for a long time but now she is refusing them after a few sips. Carers will feed her porridge at breakfast but after a few mouthfuls will close her mouth and turn her head. Manageable finger food is hit and miss. When holding up a cup of water, her swallowing seems fine for a few sips, but then its as if she doesnt know how to drink out the cup, when you hold it up and she says “ no more”

Mums had no changes to medications, if anything many of her basic meds like cholesterol, 2x bladder meds were removed earlier this year. Mum is still on Quetiapine 25mg 3x daily from a year ago, which they tried to reduce some months back, but the agitation and agression resurfaced.
I’ve got a feeling this is coming up to end stage Alzheimers.
Im going to see the Manager this week.
What questions should I be asking apart from the obvious nutrition side?

 

[Grannie G]

Hello Lin

What questions should I be asking apart from the obvious nutrition side?

I think I`d just let the manager tell you how she sees your mother`s state of health and then the questions will come naturally.

If your mother is beginning to refuse food and drink it sounds as if they are no longer needed.

A sad time for you.

 

[KathrynAnne]

Much of your post mirrors my Mum. She is in intermediate care at the moment and sometimes she can’t walk, can’t feed herself, doesn’t know what to do with a drink and just quietly mumbles a few words which make no sense. Other times she seems brighter and slightly more alert and can walk slowly with someone to support her. She has some of her own teeth but will no longer tolerate her palette. She eats very little so must be losing weight.
I feel like I have virtually lost my Mum but can see that this stage will continue for a long time. Apart from the Alzheimer’s my Mum is very healthy.

 

[Linbrusco]

From observing Mum it appears that although she has little appetite, its possibly the being spoon fed that shes objecting to, but she cant manage it herself.
If given a handled sippy cup she can hold it and drink from it but needs a lot of prompting. A small cup of Fortasip can take 45 mns.
Give her a banana with the skin peeled down and she doesnt know what to do with it but if you break off a small peice and put it in her hand she will eat it.
At this stage she seems alert and bright enough, but last 3 days surviving on a few small cups of Fortasip, a few spoonfuls of porridge and half a banana.

Manager said they will give her manageable finger food and keep prompting her to eat and see what happens over next week.

 

[KathrynAnne]

I feel really depressed and sad after visiting Mum today. She has been in bed all day and was very sleepy this afternoon when I was there. She kept whispering but I couldn’t hear what she was saying and I don’t think she was saying anything coherent anyway. The staff brought soup, sandwiches and cheesecake round for tea. Mum managed a few spoonfuls of soup, none of the sandwiches but did eat the cheesecake. It’s as though she’s not there anymore though. Her eyes look but don’t see. I hate what this illness has done to my Mum.

 

[malengwa]

Hi Kathryn and linbrusco, your posts echo my own experience with my mum and many others here. It's such s difficult thing to watch your lived one deteriorate into a shell. I was grateful in the end that mum went very quickly, just one month in a home, the end was quite quick. It's tough to acknowledge that you might be willing for the end to come, I know I was, and it's tough to not have the guilt monster sitting on your shoulder.
But we soldier on because we have to, but please be kind to yourselves at this difficult time.

 

[CharlieMax]

Hi Kathryn
My mum is in her 8th yr of Vascular Dementia and her weight has now dropped to 6st 8. She eats small amounts but the food doesn't remain in her body long enough for her to get Any nutrients from it. She gets bad bouts of diahorrea and become dehydrated as she won't drink enough fluids. Recently she was hospitalised due to a chest infection and low oxygen levels. Her blood pressure dropped to 66/52. She was in hospital 6days. Now she is home she doesn't really want to eat and is still losing weight. My brother & myself are her only carers and we get no help from anywhere. My heart is breaking.