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Eating...not eating...drinking..not drinking

TNJJ

Registered User
May 7, 2019
1,213
cornwall
Mum has Vascular Demrntia and Memantine can only be prescribed for Alzheimers or Alzheimers with mixed dementia. I wouldnt be wanting to put Mum on antiphyschotic drugs. We are not under the memory clinic as she was never formerly diagnosed via that route. A psychiatrist from the Court of Protection came to my home and just said Mum had no capacity due to Vascular Dementia. We were going through a very contentious case with CoP and the judge sent him as there was no formal diagnosis so the Memory Clinic will not deal with Mum sadly.
My dad has Vascular Dementia.He was prescribed Mirtazapine at night time.It helps with depression.He is on 30mg with a view to maybe going up a little more.It also seems to help him with his agitation during the day. I’m sorry it didn’t help your mum.No other suggestions that I can think of tbh.
 

Splashing About

Registered User
Oct 20, 2019
405
A few weeks ago she was refused for CHC because she wasn’t advanced enough. She needed to be on palliative care and not eating and drinking apparently. We were desperate for some support/respite and dad was worrying about funding. Yesterday a social worker told she might not be eligible because she’s too advanced now and therefore easier to look after.

She has been awarded it. Ironically the team told us this just after we’d discussed whether she might go to the hospice (no cost anyway)

I don’t think any of them get the bigger issue that arguing about funding at a time like this is the last thing I want to do. Arriving at a hospital with a dying cancer relative I cannot imagine having a member of staff quiz me about how it will be funded. It must be very similar to having healthcare in USA...where’s your credit card....
 

Splashing About

Registered User
Oct 20, 2019
405
Nothing to eat or drink again so far today. She’s been chatting and awake all morning. We’ve had a very angry shouting session (not unknown) followed by a lovely music therapy session after lunch organised by the palliative care team.
My youngest daughter (17) arrived at lunchtime and then had a very angry melt down during music therapy. I understand she’s struggling with the rollercoaster of events but I’d had a very distressing couple of hours earlier with mum shouting “I’ll kill you, I hate you” etc and spitting at me so I don’t feel very resilient to coping with someone else’s emotions during the only nice part of the day. She’s now stormed out of the house and said she’s staying with a friend tonight. I had a similar outburst on Saturday with her anger and emotions being directed at me.
 

jugglingmum

Registered User
Jan 5, 2014
5,616
Chester
Your mum is at a different stage to mine and I'm sorry it's so hard.

I'm afraid in my experience 17 year old daughters are unable to see anything outside of their own little whirlpool and expect us to deliver everything to them on a plate. Mine is now 18 and thankfully at uni where she is having to learn how to look after herself. I'm hoping she'll return at Christmas with a little more respect as you have to hope. You can't be all things to everyone so concentrate on your mum.
 

Splashing About

Registered User
Oct 20, 2019
405
@jugglingmum thank you for your response. You are so right. She has decided to go to a party and stay with a friend tonight. I’d previously said that she could go to the party but not stay late (school night) and I guess her decision meets both our needs o_O
 

canary

Registered User
Feb 25, 2014
11,646
South coast
Your daughter isnt coping with her grandma and is angry because she is frightened.

My dad had a heart attack when I was 17 and I remember going round to a friends a lot of the time because being at home upset me so much. My mum, though, was pretty annoyed about the time I wasnt at home
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Nothing to eat or drink again so far today. She’s been chatting and awake all morning. We’ve had a very angry shouting session (not unknown) followed by a lovely music therapy session after lunch organised by the palliative care team.
My youngest daughter (17) arrived at lunchtime and then had a very angry melt down during music therapy. I understand she’s struggling with the rollercoaster of events but I’d had a very distressing couple of hours earlier with mum shouting “I’ll kill you, I hate you” etc and spitting at me so I don’t feel very resilient to coping with someone else’s emotions during the only nice part of the day. She’s now stormed out of the house and said she’s staying with a friend tonight. I had a similar outburst on Saturday with her anger and emotions being directed at me.
I really do feel for you, my mum used to be like this when I stayed over. It’s frightening & scared me as Mum was very mobile & unfeasibly strong at the time.
But I also really feel for your daughter, mines 22 & up until recently has really struggled to understand all the issues.
it’s easy to forget at 17 they are still children, not that they’d like to be classed as that.

you are understandably struggling with your Mum, & your daughter is to. I know that my children were resentful of how my time revolves around & still does sorting out my parents care needs.

like any teenager they don’t want to be different from their friends. Your Mum means that your time is taken up with her care needs- your daughter feels left out & wants her Mum back. It’s almost like our parents become our children & actually usurp our off spring!
She can chew and swallow fine. She has just decided to stop as far as I can see. Short of prying open her lips and teeth we can’t feed her. Today she nibbled the edge of a biscuit, had a couple of teaspoons fortified yoghurt and small amount of pineapple juice. We offer regularly but she firmly says “no I’m not going to”
I think this is a next stage in the illness. Oddly her mood has improved with less food and drink. She seems happier. She had terrible IBS and diet and consequences have been a huge feature of life for a number of years. That aspect has been removed. I can’t believe she has made a decision based on this as I don’t think she’s capable of that cognitive conclusion.
I know just how you feel. My Mum is at home with me, and I am her sole carer. She still has a little mobility but I do everything for her as she can't do anything at all for herself and is also pretty much non verbal. She seems to have spells of not eating or drinking then picks up a little but the past couple of weeks its been really hard to get her to take more than a couple of sips of every drink I make her and she's only been eating a mouthful of banana and sometimes an eigth of a sandwich. Just says no and starts crying everytime I try. I've had her bloods checked and a nurse has looked her over including her mouth but can find nothing physically wrong. She has been checked by the SALT team. I've taken her to the dentist too and have a doctors appointment on Tuesday. I just don't know what to do but I think what is worse is the constant crying, wailing, pacing and drumming of her feet and constantly tapping of her fingers plus awful uh uh uh noises all the time. It's heartbreaking. I just wonder how much longer she can go on like this, or me for that matter.
My Dad is like this as well
It’s part of the body slowly shutting down. The noises could be that they are experiencing pain - with dementia it’s hard to tell. My Dad has ongoing back & shoulder issues & is on Butec patches now with oromorph to back up the pain patch. when the home say he needs it so we often find Dad doubled over in pain.

apparently the home say unless he’s screaming out or lashing out then he’s not demonstrating pain. My Dads never screamed out or lashed out not even when he broke his ankle! So he’s unlikely to start now.

end of life care is a stage & you have to respect the persons choice to either eat or drink. It’s precious time to hold your loved one & spend time together.
 

Splashing About

Registered User
Oct 20, 2019
405
you have to respect the persons choice to either eat or drink. It’s precious time to hold your loved one & spend time together.
Totally agree. I continually offer drinks and if she says yes or pauses to think ...I fetch it. As soon as it approaches her hands or mouth she say “no I’m not doing it, take it way, go away” and variations of.

The palliative nurse said they’d put a port in which they can deliver paracetamol as needed and something to help calm her during personal care but they haven’t done this yet. She was really agitated last night, folding and folding the bed sheets. I’m trying to establish what this means by googling. ? Pain. I feel like I’m forever fighting for her to be given care when everyone feels like it’s normal for this stage of the disease and not to worry. Nothing feels at all normal. I wake wondering what the day holds as every day is some fresh situation. I’m expecting sleepy today because yesterday was full on.

I’m not finding family dynamics easy. I feel constantly criticised by sister and her family. She doesn’t say anything but because of previous hurtful remarks to other family members I’m hearing them in my head. She’s done very very little over the years when I’ve been struggling with time and the emotional burden so I’ve got very little space to tolerate her opinion at all tbh. I’m being super polite because now is not the time for family fighting.

Daughter and I need to hug and recognise the challenges. I gave her a leaflet about accessing emotional support for carers...she left it back in my room which I think was a no. I think I will benefit from it and so would she
 

canary

Registered User
Feb 25, 2014
11,646
South coast
She was really agitated last night, folding and folding the bed sheets. I’m trying to establish what this means by googling.
Repetitive actions like this (folding something is a favourite) is a self-soothing mechanism to help calm them when they are feeling very anxious.

I notice the same thing myself - when I am anxious, knitting and the repetitive movements help calm me (Ive done a lot of knitting recently).

Im sending you lots of ((((((((((((((((((((((((((hugs)))))))))))))))))))))
This is a difficult stage and hard for the onlooker
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Totally agree. I continually offer drinks and if she says yes or pauses to think ...I fetch it. As soon as it approaches her hands or mouth she say “no I’m not doing it, take it way, go away” and variations of.
The palliative nurse said they’d put a port in which they can deliver paracetamol as needed and something to help calm her during personal care but they haven’t done this yet. She was really agitated last night, folding and folding the bed sheets. I’m trying to establish what this means by googling. ? Pain. I feel like I’m forever fighting for her to be given care when everyone feels like it’s normal for this stage of the disease and not to worry. Nothing feels at all normal. I wake wondering what the day holds as every day is some fresh situation. I’m expecting sleepy today because yesterday was full on.

I’m not finding family dynamics easy. I feel constantly criticised by sister and her family. She doesn’t say anything but because of previous hurtful remarks to other family members I’m hearing them in my head. She’s done very very little over the years when I’ve been struggling with time and the emotional burden so I’ve got very little space to tolerate her opinion at all tbh. I’m being super polite because now is not the time for family fighting.

Daughter and I need to hug and recognise the challenges. I gave her a leaflet about accessing emotional support for carers...she left it back in my room which I think was a no. I think I will benefit from it and so would she
ithink the hug would be more beneficial at the moment & lots of them. It’s going to take time & effort into rebuilding that relationship- I speak from experience!
 

canary

Registered User
Feb 25, 2014
11,646
South coast
I continually offer drinks and if she says yes or pauses to think ...I fetch it. As soon as it approaches her hands or mouth she say “no I’m not doing it, take it way, go away” and variations of.
Mum did this at the end too. Either that or she would firmly shut her mouth and turn her face away. All you can do is offer, but accept it if she refuses. It is the way the body is shutting down, but hard to witness.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Mum did this at the end too. Either that or she would firmly shut her mouth and turn her face away. All you can do is offer, but accept it if she refuses. It is the way the body is shutting down, but hard to witness.
yes it’s hard to witness but at least you have support from those professionals caring for your loved one.
 

Ray96

Registered User
Sep 29, 2018
87
So difficult, hugs from me too. When my nan had dementia and mum and dad were caring for her at the end stage, she was 97 and blind when she died, I had no understanding of any of this and would get very angry thinking that she was just a difficult and attention seeking old woman. I was a young adult at the time, and I now realise that it was me really that was the selfish one, with nan this had been going on for years and I felt sorry for my parents who dealt with everything on their own.

Another thing with my own mum is that she would refuse food and drink with me all day long, then a friend might pop in and she would take something, maybe it was the company, or going into hostess mode. One time when she had been refusing everything that I had tried a lady friend turned up with Marks and Spencer Ice cream, and with a big smile offered a bowl to mum and she started eating it, I was shocked and it felt as if I was a liar or had been doing something wrong.

When mum was on CHC and bedridden, she would take liquid food from the carers that came in four times a day but not from me.
 

Splashing About

Registered User
Oct 20, 2019
405
She has slept most of the day and looked very weak. We also think she has a bit of jaundice.

Then last thing this afternoon she wakes up, is lucid and drinks a carton of juice and takes a yoghurt.

We need a rollercoaster emoticon.
 

Splashing About

Registered User
Oct 20, 2019
405
I actually feel quite cheerful tonight. The rest of my family including daughter seem slightly deflated. Not that they want her to die but the whole preparing yourself for it then it not happening but you face an uncertain future which doesn’t look terrific seems to have weighed on them more. I enjoyed her pleasure in eating and drinking and am not thinking past this.
 

millalm

Registered User
Oct 9, 2019
68
I actually feel quite cheerful tonight. The rest of my family including daughter seem slightly deflated. Not that they want her to die but the whole preparing yourself for it then it not happening but you face an uncertain future which doesn’t look terrific seems to have weighed on them more. I enjoyed her pleasure in eating and drinking and am not thinking past this.
@Splashingabout Isn't it funny how we can find pleasure in the smallest of victories. Having been to the brink with my Mum, then having her rally back has done the same for me. I now try to take things day by day knowing that there is no way to predict when this journey will end. I've realized that there is no point in using the limited energy I have worrying about when that day will come. Instead I put it all into keeping up a cheerful, though mostly one sided conversation with my Mum each night while I feed her dinner and get her ready for bed. It helps the care home staff and gives me a sense of normalcy and intimacy that I like to believe she feels too. I am glad that you have had a cheerful evening, and found enjoyment with your loved one. it makes such a difference doesn't it?
 

Splashing About

Registered User
Oct 20, 2019
405
Today she was very agitated and was given a sedative. (This is the first I think). 20 mins later and she was still rambling and active. I had to leave at this point. She was however eating.

We have a place in a nursing home for next Tuesday. I’m wondering what the future will look like, how much of my life will be spent divided between two nursing homes (mum and sister) and visiting an elderly father.

I did go into work today and attended a health appointment for myself. Yeh!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Today she was very agitated and was given a sedative. (This is the first I think). 20 mins later and she was still rambling and active. I had to leave at this point. She was however eating.
We have a place in a nursing home for next Tuesday. I’m wondering what the future will look like, how much of my life will be spent divided between two nursing homes (mum and sister) and visiting an elderly father.

I did go into work today and attended a health appointment for myself. Yeh!
Look after yourself honey, you are juggling a lot
((((((Hugs)))))))