Let Her Sleep?

[Seaholly]

Mum is sleeping so much now. Some days she sleeps almost all day, just waking to eat and use the commode. This can mean we have disturbed nights when she wakes up and gets very muddled about where she is.
In the mornings, should I be sticking to a routine and gently waking her so she has regular mealtimes (not that she eats much)?

I'm struggling to decide because the 'best' way to ensure utter confusion, frustration and fear on her part is to wake her when she's asleep, or try to communicate with her when she's just woken up.

On the other hand, if she's sleeping all day, her body clock gets well and truly scrambled and it's a sleepless night for me as I am awake again at the slightest noise 'just in case' she's in distress. I've also read so much about the importance of routine!

 

[Shedrech]

hi @Seaholly
routine can help early on, I'm not so sure about later on
personally I took my lead from dad, if he wanted to sleep, fine, if he wanted to eat, fine, keeping him calm and comfortable was priority .... but, dad was living in a care home and so had staff day and night to support him
yours is a tougher situation as there's the effect on you to factor in
might you talk with the GP and ask about some support at night from Macmillan nurses (they are not only available for those with cancer)
or is it time to consider residential care, given that you may not be able to sustain care at home with little sleep
when your mum sleeps in the day, are you able to have a nap too, though altering your sleep routine to fit in with hers has it's own issues
tough choice whatever you decide

 

[TNJJ]

Hi. My dad sleeps a lot of the time now. He is still at home. He goes to sleep after breakfast, lunch and tea. He even sleeps when I’m there. There is also not much conversation now..He wakes to eat but doesn’t eat all of it. Getting him to drink is a bit of a nightmare.I wait for him to wake up naturally as I find he is less confused that way..

 

[Grannie G]

I used to let my husband sleep thinking at least when sleeping he was not troubled.

I know it`s really difficult when it means you have disturbed nights @Seaholly but I found waking someone who wants to sleep seems to make them more confused than ever.

It`s an impossible situation when it`s a parent giving you disturbed nights and you have other responsibilities. Perhaps the time has come for residential care.

 

[Seaholly]

Thank you all! We're going with letting her sleep, as it seems to ensure she is more comfortable. Thankfully, I am in a position where I can get away with disturbed nights without too much drama, as long as I can time my snoozes to match hers! The day before yesterday I was very sleep-deprived and OH stayed with her while I took the dog out. Unfortunately, we walked past a couple of foul mouthed individuals and being a bit brain-fuddled myself, I smiled and suggested it was a bit early in the day for that kind of language.

I got a rather indignant, but I thought, tongue-in-cheek response about that being the way they talked from where they were from, so I politely suggested they went back there before walking on. That was a mistake, as what I didn't realise is that they interpreted what I'd said as an attack on the fact that they were from the nearby city but now lived in the village and I was apparently a ******* snob because we all had the same ******** postcode and they could live where they ****** liked!

It shook me up a bit because I would have thought a bit more before opening my mouth if I'd had a good night's sleep! There is some tension between local people who have lived in the area for years and people who have moved out of the city and suburbs - as I am sure there is in many places, but I'd never tell anyone to 'go home' because of it! I was in my own sleep-deprived mind, just responding back with a bit of banter in the same way as they had.
I've worked in the countryside sector all my life and our home is a modest one (one of the last affordable ones in the village thanks to prices shooting up for commuter homes) and there's nothing 'snobby' about me! We're living on a shoestring to ensure I can stay with her, but that's our choice. Realistically, I think we're heading for the last few months, or even weeks and if that means some lifestyle changes for us, so be it. I keep wondering if I should try to clear the air with the angry neighbours, but in all honesty, I think they've got a chip on their shoulder that isn't my problem and they might just have been having a bad day too. I am sorry if I did touch a nerve though...

Anyway, that's the incident that got me thinking maybe I need more sleep!!!

Mum is hardly eating today and very sleepy again, so we've let her stay sitting up in bed, looking out of the window and we're working round her. I'm spoon-feeding her and holding her cup up to her lips and when awake, she's sometimes making sense and sometimes not, with the 'sometimes nots' split equally between scared and confused and quite happy in her own little world.

Residential care is out of the question because I have joint POA and the other holder point-blank refuses. I'm also afraid of another lockdown and not being there for her at the end. We can do this - I just have to keep reminding myself. It's part of our culture that I can hang on to.

 

[Violet Jane]

Why is the other attorney refusing to consider residential care? Is s/he thinking about his/her inheritance? If you don’t want to place your mother in a home that’s fine but the other attorney should not be blocking this if it’s something that you - the primary carer - think is necessary.

 

[Seaholly]

No, I'd ideally want to avoid her going into any kind of nursing home or hospice because in our culture, we look after our own and it's what I want to do. However, if her medical needs became such that her GP suggested it, I think even my fellow POA-holder would agree. It's nothing to do with inheritance and everything to do with a brief stay for respite she had in a local nursing home 4 years ago that was a disaster from start to finish.

Fingers crossed, she's here now with us all the way.

 

[Jaded'n'faded]

With your dodgy neighbours, if you see them again, you could always say you're sorry if you were rude or offensive but you'd been up all night and were a bit snappy! (Actually you weren't, but it might help restore some peace or prevent further unpleasantness. Unfortunately people like that can give it out but often can't take it in return...)

With your mum, I'd say let her sleep. There is so little you can do for people in the later stages and I agree with @Grannie G that sleeping as and when is the best way to maintain calm.

 

[NaughtyNana]

I had to be quite assertive this lunchtime to persuade my husband to get out of bed.
He had been in bed since Friday afternoon with no food and enough water to take his meds which isn't the ideal on an empty stomach. I had made him homemade vegetable soup but he protested it was too much, it wasn't and eventually did eat it. He then ate tinned pears and evaporated milk which is a throw back to his childhood and still loves.
We'd had a conversation as such, a week ago re finger food in the fridge rather than over facing him with meals that seem to overwhelm him. He had cheese, raisins, grapes, mini cocktail sausages, pork pies and sausage rolls. Yoghurt, Jelly, Mousse, Trifle, Egg Custards, Milk Pudding and Digestive Biscuits but everything except the desserts had to be thrown out as they exhausted their expiry date.
He forgets to look in the fridge and relies on me to prepare food.
He will eat sweet things so that is what he is going to have, as I can't see the point of making him even more sad and unhappy.
It really helps when people share so I know I am not alone. A relief to hear sleep patterns are upside down.
Every day brings another challenge for him and me, but mostly for him. It's heartbreaking witnessing his frustration as he struggles for words, thoughts, and memory and I cry a lot. When he is awake he just sits staring into space, or falls sleep but very occasionally watches depressing news.
He was an avid reader but no longer reads and we have tried audio books but he loses concentration or again falls asleep. He's survived three heart attacks from the age of 37yrs, 47yrs and 60yrs.
After the middle one he had a triple bypass.
He exercised playing golf 3 times a week and enjoyed our son's holiday home in Spain.
Loved to travel.
He cries quie a lot.
He cries because he is no longer in control.
He cries because he is so confused.
He cries because of what he thinks he is putting me through.
He cries because his family are not local.
He cries because his strength is sapping away.
He cries because of depression.
He cries when he sees me doing everything.
He cries because he can no longer drive.
So many things are taken away when someone suffers this dreadful debilitating embarrassing illness.
I can't call it an illness can I?
Who made the decision that dementia isn't an illness and doesn't warrant care from the NHS.
Is it self-inflicted??
Does it have another name??
If so please enlighten me!!
He is 85 yrs old and I am 81 yrs old and we have worked every day since we left school, me 15yrs old and my Husband 17yrs.
Including him serving National Service for his King and country.
We have paid National Health Contributions and taxes all our life.
We can proudly hold our heads high for the people we are.
Sorry rant over, but I am feeling angry, frustrated, fearful, scared etc., and I don't for the life of me understand our Governments behaviour.

 

[Runawaytrain]

I often think that this forum should be compulsory reading for every government minister. Empathize with everything in your post NaughtyNana.