My mum is having some very bad nights. Prior to four months in hospital for septic arthritis followed by covid, mum was always an insomniac and very anxious. I’ve been supporting her emotionally (and increasingly physically) since dad died in 2016.
hSince coming home 3 weeks ago, I’ve stayed at her house and become her full time carer. It’s a huge adjustment - mum’s having panic attacks and extreme restlessness some nights. Even when not panicking, she calls me to her bedside downstairs several times a night to ask what time it is and can’t grasp that it is still the same night and still not time to get up. I try not to argue when she insists that the clock has gone around twice while I’ve been sleeping but calmly say that it’s not time to get up yet.
She sleeps well in the daytime. I know the advice will be to try to establish a routine and develop sleep hygiene and this is what I carefully planned and tried my best to do. It seems no matter what I do mum is stuck in this pattern. First thing in the morning is fine, mum wakes up and is fine at mealtimes, and sometimes sits in her recliner to watch TV but shortly after bedtime she becomes a different person.
I think this is related to the existing anxiety and sleeplessness, so I talked to the Dr who prescribed an antidepressant that has almost immediate effect (not wanting to prescribe sedatives because of daytime side effects) but that made mum many times worse at night, with all the symptoms of terminal restlessness and added paranoia - she thought I was changing the clocks to fool her - and many times more drowsy with slurred speech in the daytime. I stopped it after 3 days.
I just need to get this off my chest - I feel very guilty that I’m being ineffective in helping mum with this. I need a shoulder to cry on tonight!
Oh Jean,
I see you were posting in the early hours. You poor thing. Sleep deprivation is the worst.
Can you get your Mum outside more and into the day light? It’s not going to be easy to reset her body clock. Perhaps it would be easier to focus on how you can get more sleep yourself. Would your Mum watch TV in bed for example, if she woke up? Would she be able to pour herself a drink from a flask?
Sleep problems after recovering from Covid are common, do you think its that or do you suspect something else is going on?
Not getting enough sleep is scary. You hardly sleep at night, but you need to go to work during the day. At work you sit like a vegetable, problems begin at work. I had a period when my dad had a nervous breakdown. I was looking for a way out by taking a vacation, started walking with my father during the day, in the evening I made him tea from chamomile and sage. Gradually his sleep at night improved and he returned to his normal routine. But I think I was just lucky to solve the problem so easily. Besides, my dad is quite flexible.
Hi Melly, mum is very frail and we haven’t got to wheelchair stage yet - we do have one ready if she gets stronger. She is only able to transfer into the recliner chair for short periods and then needs to go back to bed. She’s also not reliably continent although that can be handled so I do hope I can get her out in a wheelchair at some point. I’m waiting for social services to get back to me about a ramp for the house as wheelchair access is currently impossible.
I rang the GP surgery this morning as I’m suspecting a water infection - mum isn’t usually this confused - a bit, but this is really bad - they said ring District Nurse who still haven’t made contact with us, so I left a message.
It’s the constant need for attention that has got to me. I can’t get more than a few minutes at a time away from mum and that’s just not enough. I know I need to get some support with that but there’s SO much to do just at the moment getting the basics sorted and I’m completely burned out trying to ring people and organise things. It seems overwhelming. I’m having a good cry today but can’t let mum see the slightest thing wrong because she then gets really upset and agitated, saying it’s all her fault and I will never forgive her. I have to be full of happiness and cheer even when I want to scream.
Hi Beatrice, thanks for the reply. I knew this would be full on so I have taken a year’s unpaid sabbatical from work. That has at least given me some space and taken away the fear of losing job security.
I have tried many things already, including essential oils (mum said the smell was driving her mad but she loved them before) favourite TV shows (mum said they just aren’t as good as before and doesn’t want to watch them) the book she was really enjoying before becoming ill - not interested in reading, warm milk and a biscuit in the middle of the night - makes no difference! I’ll keep trying. I was very tempted to make breakfast at 3 in the morning just so I didn’t have to tell her she was wrong about what time it was - she said I’d been sleeping for a whole day and there must be something wrong with me.
I’m afraid that if it can’t be resolved, then mum needs to have someone available all the time.
Sadly, that means either a move into residential care, or some night staff to get some sleep.
Caring is about a BALANCE of needs between caree and carer.
You can’t go on like this much longer without help.
Is there anything we can help with as far as the paperwork is concerned?
Thanks for the reply bowlingbun. yes, I do understand if it’s routinely impossible for me to sleep something will have to change. Or maybe not, if it’s not every night from here on in. Some people do it, and if I can adapt I will do it too.
Paperwork is in hand, thanks - I am paying a small fee to independent advisors recommended by the local authority to get the applications done.
Yes - but let me explain a bit. When mum first came home from the hospital three weeks ago, she was extremely anxious (even that is an understatement, she was screaming and crying when left alone which was not at all like her prior to hospital) and doesn’t remember living in this house at all.
She was very delirious with septic arthritis followed by covid, clearly has some memory issues and was also very fearful that she would be forced to sit in a chair instead of being allowed to lie down, that I would decide not to look after her and she’d have to go into a home (during delirious episodes with sepsis, she believed I had abandoned her and of course we weren’t allowed to visit due to covid which she caught anyway). I dwelled in hell for four months not being able to comfort her.
It’s fair to say she was completely traumatised by the covid era hospital stay. From the times I managed to get through to the wards (she was often moved) I could tell it was somewhat chaotic and saving lives (fair enough of course) was obviously more important than comfort or reassurance. I think all attempts at reassurance were abandoned due to lack of staff and time.
My whole energy since mum came home has been going into reassuring her and calming her fears. She was never a very sociable person outside a small circle of friends and took two weeks to warm up to the carers. She still wants to know I am there when they are attending to her, and gets anxious about when they are coming and doesn’t relax until she knows they won’t be here for a few hours.
So yes, the plan is that mum will eventually feel confident and secure enough to be left with someone else for a bit. By eventually I mean that I will give her as much time as she needs to avoid any further anguish. She is coming round a bit but this episode of confusion and delirium, which I think is due to a water infection, is setting us back a bit.
She also needs two people (for health and safety reasons, I of course manage on my own) to help her use the commode and can’t walk so apart from not wanting to upset her emotionally I will also need to ensure her physical needs can be met by any sitters.
I do hope so. I’ve had some serious UTI’s. The medication wiped me out for a week, so hopefully mum will feel more comfortable and sleep better, but may feel very weak.
Still very delirious - not sleeping. When she’s had very sleepless nights before she’s slept from around 5am and through the day, but no sign of tiredness so far today. It’s difficult to know what I’m dealing with at this point! I did better last night.
Oh, you have a very difficult situation. Apparently, I managed to solve the problem with “little blood”. I don’t even have any ideas anymore, except perhaps for psychotherapy. I do not know what can help and will be effective in such a stressful state.