Utterly, utterly exhausted

I’m a 58 year old female sole carer for my 99 year old dad. (I’m my dad’s only surviving child and there is no other family - aside from his 85 year old nephew.) He’s been judged to have mental capacity - and if you heard his pithy analysis of Dominic Cummins today, you’d see why.

Problem 1 which is manageable: Frailty when walking and severe balance problems (backward toppling) render zimmers unsuitable and OTs have no solution. 12 falls this past month - 2 involved head hitting floor and anti-coagulants means CT scans.
I gave up my job 4 years ago to help him (cooking, cleaning, washing dad and acting as his human mobility aid in the absence of a zimmer.) At 99 and with his balance gone, he can’t be left alone and I moved in with him.

Problem 2 which i don’t find manageable: Severe REM sleep disturbances (acting out dreams); tactile hallucinations and some visual hallucinations.

In the day I can’t leave my dad, or go to sleep, because he frequently drops off to sleep and tries to get up from his chair to fend off the hallucinatory attackers (hands grabbing him, his chair tilting 90 degrees, lobsters biting him - none of these have corresponding visual hallucinations) and he falls unless I grab/catch him. (The visual hallucinations he has occur during waking & sleeping, are apparently Charles Bonnet syndrome - diagnosed after his 2016 stroke that affected his visual field only - and do not cause him to jump up and fall.)

As noted, my dad’s tactile hallucinations mainly occur during sleep. At nights, when he’s in bed, he shouts out continually prior to his getting out of bed. I again leap up, run into his room to catch him when he stands and before he topples over and I put him back in to bed. (Cot sides inappropriate as he has strong upper body strength and would get out over the top. A falls mat is also inappropriate as this would make him even more unsteady when he stands and in any case, he hits his head on the bed frame/walls.) He has a ‘low bed’ but still gets out of it.

My dad won’t involve social services etc and tells me I should take everything in my stride. Things were getting worse over the past few weeks and then, after coming back from hospital following a fall a week ago, I have reached crisis point - as I been up all night, every night for 7 days now - either sitting in my bedroom or in my dad’s bedroom as he calls me every 10 minutes to take away the lobsters biting him, the hands tearing at him etc, the bed turning upside down, the people in the room etc. So far tonight, since 1am he has called me over 30 times. (As explained above, I am unable to sleep in the day.)

The GP is aware of everything and have referred my dad to a psychiatrist for the hallucinations/ sleep disorder, as an emergency - but the waiting list is months. And the GP will not prescribe any sleeping tablets as these would make my dad even more unsteady

To say I feel unwell and knackered is an understatement, and I am now experiencing severe headaches. My genuine question is this: How long can I go on without sleep without being a danger to my dad and myself? (Thanks in advance for any information on my sleep deprivation.)

(Just to add as I wasn’t clear - it was my dad who had the fall and came out of hospital a week ago - not me!)

Ring Social Services today and say you CANNOT care for dad any more. It is not acceptable for you to be left like this.
Was there an assessment before dad was discharged last week?
Dad is nearing the end of his life. NHS Continuing Healthcare was designed to help people in your situation. Ask the GP to arrange Fast track CHC to be arranged.

Hi Elizabeth, welcome to the forum

Your situation sounds really difficult for you, no wonder you are absolutely shattered. I hope you pick up some advice on our forum or you could contact our adviceline on 0808 808 7777 or email them at advice@carersuk.org

I don’t know if you’ve heard of our online weekly meet ups for carers to get together and chat informally. Carers come together every Monday afternoon at 3pm for an hour or so, people say they’ve found it really helpful and supportive and it’s nice to be able to take a little bit of time for yourself. There’s no pressure to share any more than you’re comfortable with. Join up details are here:


Do join if you’d like to

kind regards

Hi Elizabeth,

Welcome to the Forum. I am sure you know already that this cannot continue.

You do not need your dad’s permission to contact Social Services. His needs override his wants at this stage. I would suggest contacting them urgently for a care assessment. You will need to raise merry hell to get them to do an urgent assessment but clearly he needs more support than just you. Perhaps a night carer so that you can get some rest.

I would also suggest returning to the GP on your OWN behalf to state that you cannot and will not continue. You are not obliged to care for your dad, even if you wish to do so. The GP needs to be made aware of the impact that this is having on you.

Equally I would contact Carers UK Helpline to ensure that you get all the financial support that dad is entitled to. This money could be used, as in my mum’s case, to pay for a cleaner / gardener, anything to make your life easier.

A very difficult situation and I do hope you get some respite soon. Make sure that you ask for a respite break at the care assessment.

Good luck, Anne

Hi Elizabeth. Please look after yourself properly. Your dad has reached an incredible age, but he is not treating you fairly. You must take care of yourself or you will get very ill. Your dad is being unreasonable telling you to ‘take everything in your stride’. He is unaware of the effect this is having on you.
Please take the advice of BB and phone Social Services to get some help.
You have done incredibly well but no one could cope with your situation on their own. Things will just get worse.

It is a well recognised fact that the “very elderly” classified as over 85, need more and more help until they die.
They lose the ability to see how much others are doing for them, they become entirely “self focussed”.
I saw this in my own mum, even when my husband had just died at the age of 58, mum still bemoaned the fact that dad had died at 78 and SHE felt short changed!!
Three months after my husband died, I was involved in a very serious car accident, and could barely walk. Mum had carers 3 times a day a girl to do her ironing and extra cleaning, and a gardener, yet still saved jobs for me!
I’m telling you this to show that your dad is not being mean or nasty deliberately to you, it’s just what happens in old age.
Dad could not manage on his own without you, but whilst you are doing things for him, he can keep up the pretence that he can still do what he used to do, not recognising that he cannot do them any more. Another thing I saw in all four of our parents. They told Social Services that they can cook, clean, walk, when they had not been able to do these things for years. A useless social worker will accept these responses because that’s what they want to hear, a good one will dig a little deeper.
One of mum’s needs assessment questions was “does your relative want a Carers Assessment?” “No” was recorded on the form, mum just didn’t see me as a disabled daughter, but as the fit active person I once was!!
You cannot be forced to care, you could leave today and there’s not a thing he could do about it.
The only power he has over you, is the power you let him have.
You are not his little girl, although he likes to remember you as that, you are a grown woman, probably near to retirement age yourself, or over it!
It is YOUR decision about how much care you do, or do not, give him.
Social Services and the doctors want relatives to care, because generally their main aim is to keep someone out of hospital or care home because it costs more than giving someone a few crumbs of support at home.
Your role becomes that of “parenting the parent”. Not providing the care, but making sure it is provided.
Standing up to a parent to say “I can’t do it any more” is difficult. Saying “You need more than one person to look after you now” is slightly easier.

Working out where to go from here, to get him the care he needs, depends initially on two questions.
Does dad own or rent his home?
Does dad have over £23,000? (Yes/No)
If he has over that amount, he will be expected to pay for all the care he provides.
Do you have Power of Attorney?

My dad has an arthritic hip and used to use a frame but finds it less painful to sit on a light weight wheelchair (fabric foldable one) and wheel himself around by pushing with his feet. Maybe that might suit your dad? I think you need more help than this but it’s a short term practical idea…
Look after yourself x