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Lack of sleep

Testona

Registered User
Jul 21, 2015
29
Abergavenny
I feel like crying. My father - who has either vascular dementia, or mixed dementia, we are waiting for a final diagnosis - is obsessed with time. Today I have to take him to an appointment at 10.45. He woke me up at 06.45. I am so tired I can barely see.

He could no longer set his alarm clock, so I got him a simple one. He couldn't always set that either, so he asks me to check it every night. It had a bell like a fire engine, and he would get up before it went off, but wouldn't turn it off, so it would wake me when it went off and I would have to get up and turn it off. I changed it for a quieter version, but it can still wake me up. He insists on setting it every day, even on a Sunday. Even if I beg him not to set it, he says he won't and then does it anyway.

I know this is going to get worse. Dealing with him on a daily basis is tough, but this constant tiredness is making it worse.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Dear ElaMorg; so many of us have been through this, or are going through it now. I do hope someone comes on here to encourage you as to what may be helpful to you.

Sleep deprivation has to be one of the worst things carers face. I sincerely hope you can get good advice, perhaps from your GP, as you cannot care effectively if you are tired.
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
Dear ElaMorg; so many of us have been through this, or are going through it now. I do hope someone comes on here to encourage you as to what may be helpful to you.

Sleep deprivation has to be one of the worst things carers face. I sincerely hope you can get good advice, perhaps from your GP, as you cannot care effectively if you are tired.
Thank you. I just felt desperate. The alarm is set for 08.15 and this is the first time in about two weeks that I have slept beyond 06.00. I felt like crying when he woke me and I saw the time!
 

Jessbow

Registered User
Mar 1, 2013
3,014
West Hertfordshire
Hide the clock, break the clock....accidentally drop it in the washing up water when you are setting it.
Invest in a plug in lamp timer, set the lamp to come on when its time to get up. Its an indicator for him, which might be enough to pacify him and it wont wake you if he is safe being up and about on his own.
Invest in a blackout blind- lkeep his room realy dark if you can
Learn to keep quiet about appointments until after breakfast *on the day* then just tell him and go.

Sleep deprivation is like torture
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
Hide the clock, break the clock....accidentally drop it in the washing up water when you are setting it.
Invest in a plug in lamp timer, set the lamp to come on when its time to get up. Its an indicator for him, which might be enough to pacify him and it wont wake you if he is safe being up and about on his own.
Invest in a blackout blind- lkeep his room realy dark if you can
Learn to keep quiet about appointments until after breakfast *on the day* then just tell him and go.

Sleep deprivation is like torture
it is! The lamp timer is a great idea. I'll look for one. So far he is ok to be up on his own.
I'm afraid keeping quiet about appointments won't work at the moment as he is obsessed. He checks constantly. Everything is written on a calendar in the kitchen, and backed up in a diary I got him. He now wants separate lists. 'To be on the safe side'.
 

marionq

Registered User
Apr 24, 2013
6,068
Scotland
Huge sympathy for anyone in this situation. Zopiclone worked for my husband topped off after some months by Trazodone. No side effects from either but we do get a decent nights sleep.
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
Huge sympathy for anyone in this situation. Zopiclone worked for my husband topped off after some months by Trazodone. No side effects from either but we do get a decent nights sleep.
My father manages to sleep quite a lot! It's just that he wants to wake everyone else up!
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
At the moment, I don't know how to get through the day. I have to go to a funeral at 15.00. Maybe I can get a little rest after I bring my father back from his appointment.
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hi Ela,
I wonder what sort of other support you have? Do you have other family who can relieve you perhaps a day or two each week? If not then I do believe you need extra help from Social Services and it is possible to have an assessment of both your Dad's needs and your own as a carer. TBH even with other help there is no harm in getting an assessment.

I think you should also see your own GP so that they are aware of the situation and how difficult things are.

From the assessment you may get your Dad to a day care at least one or two days each week (you could persuade him by calling it his Club).

This is a factsheet which explains more about it for people living in Wales:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2974
 

Jessbow

Registered User
Mar 1, 2013
3,014
West Hertfordshire
it is! The lamp timer is a great idea. I'll look for one. So far he is ok to be up on his own.
I'm afraid keeping quiet about appointments won't work at the moment as he is obsessed. He checks constantly. Everything is written on a calendar in the kitchen, and backed up in a diary I got him. He now wants separate lists. 'To be on the safe side'.
Don't write on the calendar, don't write it in the diary! He' terrified he'll forget, don't fuel it - nothing to remember, nothing to fret about.
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
Hi Ela,
I wonder what sort of other support you have? Do you have other family who can relieve you perhaps a day or two each week? If not then I do believe you need extra help from Social Services and it is possible to have an assessment of both your Dad's needs and your own as a carer. TBH even with other help there is no harm in getting an assessment.

I think you should also see your own GP so that they are aware of the situation and how difficult things are.

From the assessment you may get your Dad to a day care at least one or two days each week (you could persuade him by calling it his Club).

This is a factsheet which explains more about it for people living in Wales:

Thank you. I went to see a dementia support worker on Monday. She was very helpful and things will be put into place as time goes by. I am going to attend monthly meeting of the Alz Soc Carers Support Group as of Monday.
My father should go to a local day hospital twice a week but he refuses to go. He currently attends a twice-weekly memory course clinic, he has done four of seven weeks. He won't join any of the other activities that have been suggested.
I am going to be attending a stress control group, too. I live in my parents' house at the moment, so my mother is here but she is not of much practical help - and is actually detrimental to my own sanity! She refuses to let my father be told of his condition, though he must have some inkling, given all the appointments he has to attend. Our GP is aware of the situation.
I think that when I am as tired as I am now, everything just seems worse. I just can't make my father understand that I need some sleep. And I know that I am banging my head against a brick wall.
 

Tin

Registered User
May 18, 2014
4,825
UK
When he asks you to check if the alarm is set, will he notice if you turn it off? The chances are that he is awake before it goes off anyway. At some point you will get 'creative' when dealing with the obsessive side of Dementia.
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
When he asks you to check if the alarm is set, will he notice if you turn it off? The chances are that he is awake before it goes off anyway. At some point you will get 'creative' when dealing with the obsessive side of Dementia.
He always wakes before it goes off. Then he gets up without unsetting it and it wakes me up. I will have to do s you suggest and then hope that he doesn't manage to reset it.
I have been trying to get some rest after bringing him back from the doctor but I am too wound up.
I am supposed to be going to a funeral later, but I can't see me making it. I was supposed to be taking my parents and a friend of theirs. The friend is coming here by car and I am too exhausted to think straight, but they will have to sort themselves out. I am at that point of tiredness where even small things seem insurmountable.
 

skaface

Registered User
Jul 18, 2011
107
Ramsgate
Hide the clock, break the clock....accidentally drop it in the washing up water when you are setting it.

Learn to keep quiet about appointments until after breakfast *on the day* then just tell him and go.

Sleep deprivation is like torture
This is what I do these days - up until a few months ago I had to ring my mum to remind her about appointments and again on the day to tell her I was on my way to pick her up in plenty of time for her to get ready.

Now I just arrive over an hour before we need to leave, remind her then and then encourage her to get ready. Thankfully I don't live with my mother and I'm told that it's not a good idea now because it would upset her routine.

I hope you get some relief soon, I'm useless when I don't have enough sleep, though the antidepressants tend to knock me out for the night.
 

Testona

Registered User
Jul 21, 2015
29
Abergavenny
Does he come to your room to wake you up? I wonder if a big DO NOT DISTURB sign on your door would help?
He did this morning. This is a new thing. The sign might help, but on the other hand he seems to be St the stage where he doesn't see what he is looking at.
I made it to the funeral I had to go to, but cannot attend the wake. My brother has left his dog here for two nights and I am almost hysterical through lack of sleep.
 

Leolady56

Registered User
Aug 9, 2014
44
South Africa
Sleepless Ella

Hi Ela,
I wonder what sort of other support you have? Do you have other family who can relieve you perhaps a day or two each week? If not then I do believe you need extra help from Social Services and it is possible to have an assessment of both your Dad's needs and your own as a carer. TBH even with other help there is no harm in getting an assessment.

I think you should also see your own GP so that they are aware of the situation and how difficult things are.

From the assessment you may get your Dad to a day care at least one or two days each week (you could persuade him by calling it his Club).

This is a factsheet which explains more about it for people living in Wales:

Thank you. I went to see a dementia support worker on Monday. She was very helpful and things will be put into place as time goes by. I am going to attend monthly meeting of the Alz Soc Carers Support Group as of Monday.
My father should go to a local day hospital twice a week but he refuses to go. He currently attends a twice-weekly memory course clinic, he has done four of seven weeks. He won't join any of the other activities that have been suggested.
I am going to be attending a stress control group, too. I live in my parents' house at the moment, so my mother is here but she is not of much practical help - and is actually detrimental to my own sanity! She refuses to let my father be told of his condition, though he must have some inkling, given all the appointments he has to attend. Our GP is aware of the situation.
I think that when I am as tired as I am now, everything just seems worse. I just can't make my father understand that I need some sleep. And I know that I am banging my head against a brick wall.
Oh Ella. I can TOTALLY relate with your tiredness. My mom since a while ago tends to have many day time naps with the result that she became super active during the night time hours. I have already had insomnia problems since I was a child so just *have* to get at least 3-4 hours if I have to take care of Mom. Though she would have no clue how to set the alarm on her clock - she would switch the lights on in her bedroom so that she can see what time it is. (Her clock was literally inches away from where she sleeps plus it has luminescent numbers.) But yes, she is struggling to see anything now....

Because I am such a super light sleeper anyhow, with her switching on the lights constantly during the night - I could not function at all anymore. I eventually took her alarm clock away and replaced it with a HUGE wall clock which has glowing numbers on it (It needs to be plugged into the electricity socket) so that she can see what time it is without having to switch on the light. Is there no way you can turn your dad's alarm off before you go to bed without discussing it with him? Or at least turn the alarm down in volume? Sorry, perhaps you have already tried all of these things - maybe I am just clutching at straws for you because I KNOW what it's like to be a carer who never gets any/enough sleep!

I know it's risky for Mom but after her Geriatric Specialist took one look at how mentally and physically exhausted I am - he suggested that I buy ear plugs with the highest noise blocking factor. I did so and believe me - for me it has been a god send. A jumbo jet could take off from within my bedroom and I would hear nothing! They have literally been a life saver for me. I know that we actually should listen to what our loved ones do during the night time hours but things became SO critical due to no sleep that I decided that if I collapse from a heart attack or stroke due to being so tired all the time - it was the ear plugs and I would just let Mom do her wandering at night.

If you cannot get these memory foam ear plugs - factor 33 in the UK - if you would like to try them - just let me know and I will post some to you with the greatest of pleasure as I know what it feels like to be 'dead' on your feet due to lack of sleep!

Wishing you loads of strength and courage on this difficult journey...

Colette xoxo
 

Johnny5

Registered User
May 3, 2015
8
I really sympathise with the OP. I would also be inclined to put a lock on your bedroom door and see how your dad reacts. He may bang on it to begin with and try and open it, but he may get the message later on and leave you alone. A lock on our bedroom door has definitely improved our sleep when dad is around.

You may also try going to sleep at a similar time to your dad and waking up with him?

I sincerely hope you manage to get something sorted so you feel more recharged.
Johnny5
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
If he's forgetful he won't understand your need for more sleep, and would probably get upset and even frightened over locked doors and earplugs.

Could you perhaps stay overnight at a friend's house for a proper nights sleep?