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

Splashing About

Registered User
Oct 20, 2019
405
How does everyone cope with not being there with her all the time. I find it hard to think of her alone but as hard to be there
 

canary

Registered User
Feb 25, 2014
11,656
South coast
I have a feeling that time and being alone doesnt have the same meaning for people who have reached this stage of dementia. @Splashing About . Im thinking that it is probably similar to when you are really ill and somehow the external world starts to diminish. I dont think you need to be with her all the time. The home will know when she is reaching the end and all the while she is eating and drinking (albeit in very small quantities) she could go on for quite a while.
 

Moggymad

Registered User
May 12, 2017
475
How does everyone cope with not being there with her all the time. I find it hard to think of her alone but as hard to be there
It is very very difficult to go through the waiting. Needing to go home but wanting to stay just in case. Wanting it to end but not wanting to lose her. Going home but cannot switch off. I carried my mobile with me around the house, into the garden, to the loo... when the call did come it was on the house phone!
My mum was in hospital in a side room during this time too close to the end to be moved to nursing home. For a couple of days we spent hours in the room with her all day half the night undecided what to do, desperate for sleep but not wanting to leave. We had to put our trust in the nurses to see the signs & know when it was time to call us back in. They didn't let us down & we got back in time.
There are specific signs that NH staff will know. I had never seen mottling before but it was very evident when we got back, cold limbs plus the change in breathing. The lead up to this stage took a few days but once these signs appeared it was quick.
Put your trust in the staff & try to carry on as before. At these times it is easy to dismiss your own need to eat, rest & sleep. Wishing you strength xx
 

Splashing About

Registered User
Oct 20, 2019
405
I’ve arrived at the home to find her shouting and angry. I've spoken to staff about medication and there is some disagreement between two nurses here. One feels she should have something to sedate her and another doesn’t. The one who doesn’t want sedatives also said mum was very strong I.e. not end of life. The GP is going to be asked to see her and arbitrate. I feel like she’s hallucinating (she has done for a year) and her anger arises from those imaginary events. I’ve also said we wouldn’t know if she was in discomfort or pain. The idea of visiting her for months and months in this state is horrible. She’s very agitated and reliving angry memories. I’m not sure she gains anything from my presence at all.
 

Splashing About

Registered User
Oct 20, 2019
405
All I can say is be kind to yourself, you know where I am & it would be lovely to meet up
I’d love to meet-up but time is a major issue for me between juggling work and looking after both parents not to mention husband and daughter:(
I will text you when I get a spare window of opportunity!
 

Splashing About

Registered User
Oct 20, 2019
405
Visited the home today: GP has not seen mum and the carer looked surprised that I thought they might. So I explained the conversation that was had on Saturday when I was told they wanted the GP to visit. No information forthcoming so on my way out I asked in the office. Admin staff obviously didn’t want to engage and just kept saying she didn’t know....so I asked when I could speak to someone who did. Under pressure she opened up the diary and there is a note from Saturday saying I’d asked for the GP?? I hadn’t, although I did support it as a plan.

The carer also asked if mum had her children taken away...I said I was one of the children and no she hadn’t. Carer looked disbelieving as if I was covering things up and repeated that mum talked a lot about the children... I said I didn’t recall being taken into care... o_O:D I left under the impression that the care home gossip is going to be based on Mums confused ramblings which can be pretty interesting!! but bear no relation to my childhood memories. It was all a bit unsettling/irritating.

Mum seemed oblivious to me apart from when she was shouting go away or get out at me
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Visited the home today: GP has not seen mum and the carer looked surprised that I thought they might. So I explained the conversation that was had on Saturday when I was told they wanted the GP to visit. No information forthcoming so on my way out I asked in the office. Admin staff obviously didn’t want to engage and just kept saying she didn’t know....so I asked when I could speak to someone who did. Under pressure she opened up the diary and there is a note from Saturday saying I’d asked for the GP?? I hadn’t, although I did support it as a plan.

The carer also asked if mum had her children taken away...I said I was one of the children and no she hadn’t. Carer looked disbelieving as if I was covering things up and repeated that mum talked a lot about the children... I said I didn’t recall being taken into care... o_O:D I left under the impression that the care home gossip is going to be based on Mums confused ramblings which can be pretty interesting!! but bear no relation to my childhood memories. It was all a bit unsettling/irritating.

Mum seemed oblivious to me apart from when she was shouting go away or get out at me
Happy days!
Aged mother perpetuated an alternative reality that many still believe! meanwhile reality is often sadder !

Care home staff should be used to these dementia based stories, but human nature often overrules common sense! xx
 

Splashing About

Registered User
Oct 20, 2019
405
The carers told my daughter they’d had a couple of days where they wondered if it was that moment they should call us to come....then the next day mum looks strong and belligerent which is as confusing to them as it is to us apparently. Still not eating much but consistently having a few mouthfuls of pudding and some breakfast. Taking milk regularly so I feel she is getting enough considering she doesn’t leave her bed.

She needs a haircut but we are not quite sure how to facilitate this as she moved around a lot and gets angry with any personal care.

I managed nail cutting two days ago when she was calm (first time for quite awhile)

It feels like we may be settling into a calmer pattern now Christmas is over.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
The carers told my daughter they’d had a couple of days where they wondered if it was that moment they should call us to come....then the next day mum looks strong and belligerent which is as confusing to them as it is to us apparently. Still not eating much but consistently having a few mouthfuls of pudding and some breakfast. Taking milk regularly so I feel she is getting enough considering she doesn’t leave her bed.

She needs a haircut but we are not quite sure how to facilitate this as she moved around a lot and gets angry with any personal care.

I managed nail cutting two days ago when she was calm (first time for quite awhile)

It feels like we may be settling into a calmer pattern now Christmas is over.
This dementia journey is strange with all its twists & turns. Feistiness is a strength of character that aged mother has in bucketloads
Dad eat barely anything for months - I was amazed at how little a body needs.

It’s hard to witness this stage, but nature has its own pathways that we no longer see regularly unlike other generations.

Take care of you & OH
Sending much love
Xxxxx
 

Splashing About

Registered User
Oct 20, 2019
405
She’s not eaten much for three days...just two spoonfuls of custard. She is drinking milk though. Her skin feels dry. Still a good colour and amazing grip. I find it hard to imagine she is dying. Even writing that is a bit odd.

Keeping this thread is helping me face reality. That includes the fact that this could go on for a long time because it’s painful to watch and thinking it would be quicker is actually more comfortable...but the duration also numbs you to the fact she’s dying so I sometimes feel like it will be an awful shock.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
She’s not eaten much for three days...just two spoonfuls of custard. She is drinking milk though. Her skin feels dry. Still a good colour and amazing grip. I find it hard to imagine she is dying. Even writing that is a bit odd.

Keeping this thread is helping me face reality. That includes the fact that this could go on for a long time because it’s painful to watch and thinking it would be quicker is actually more comfortable...but the duration also numbs you to the fact she’s dying so I sometimes feel like it will be an awful shock.
Oh lovely I really do feel for you, it’s a difficult process to live through. Hope Mum isn’t in any pain or discomfort
My love & thoughts are with you
Xx
 

Splashing About

Registered User
Oct 20, 2019
405
Haven’t visited for several days as I’ve been unwell and didn’t wish to share. Today was a difficult visit as she was just angry and shouting. I felt like she didn’t want me there. I felt like she was in discomfort but nothing we can say for certain and this behaviour is not uncommon. Not nice to watch. She wouldn’t drink anything for me and she hadn't eaten anything. However I do know that yesterday she ate and the carers say she regularly drinks.

Her feet and above the ankles looked a mottled purple as if the blood vessels are inflamed. Based on previous experiences I’m not going to worry (much) as no one else seems concerned and quite often you visit the next day and it’s all changed. Hard to suppress those thoughts though
 

canary

Registered User
Feb 25, 2014
11,656
South coast
Im so sorry that your visits aer still so difficult
((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
I hope you are over your illness now
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Haven’t visited for several days as I’ve been unwell and didn’t wish to share. Today was a difficult visit as she was just angry and shouting. I felt like she didn’t want me there. I felt like she was in discomfort but nothing we can say for certain and this behaviour is not uncommon. Not nice to watch. She wouldn’t drink anything for me and she hadn't eaten anything. However I do know that yesterday she ate and the carers say she regularly drinks.

Her feet and above the ankles looked a mottled purple as if the blood vessels are inflamed. Based on previous experiences I’m not going to worry (much) as no one else seems concerned and quite often you visit the next day and it’s all changed. Hard to suppress those thoughts though
Well there is life & spirit still left in your Mum!
What else can you say lovely...
it’s a horrid situation but you still are doing all you can

ps. sorry if inappropriate but your mum sounds a bit like Father Jack ....
the character off Father Ted.

hope you feel better soon
Xx
 

Andyseam

New member
Jan 20, 2020
3
My mum is in the end stages. She is in a Care home Not eating and drinking. Only moist sponge on the lips. She just lays there in bed, needing to be turned every 2 hours. She cannot talk. She last had 15ml water since 16 January.... not eaten for 8 days either. It is hard to watch.
 

Woo2

Registered User
Apr 30, 2019
1,140
South East
Welcome to Tp @Andyseam from me , I am sorry to hear about your mum , it’s a very difficult and painful situation .watched my grandmother go through this for about 18 days :(. I have no wise words,just wanted to acknowledge your post . Wish you peace .
 

Splashing About

Registered User
Oct 20, 2019
405
Hi @Andyseam this is so hard and so cruel. I think my mum isn’t fully conscious of her surroundings. It sounds like your mum is unlikely to be very aware of much more than sounds now. I hope you manage to say what you need to x
 

Andyseam

New member
Jan 20, 2020
3
Hi
Today at 1.30pm my mum sadly passed away. This cruel disease has taken her from me. I went from work to the care home and saw her , along with my brother and sister. I just feel empty, emotional and numb. This is my first death. I don't know why??? As a child My mum was security, there for me if if fell, there to cuddle, i felt safe, loved. Her life was devoted to there children's well being. I feel lost. Cry all the time. Oh, why???? I MISS YOU MUM.
 

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