1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    I wonder how many of us go to bed at night despairing after the day they have had?

    And then toss and turn in the night, making plans to change things, maybe a care home, maybe insist to SS you have carer burn out, maybe running away, to finally fall asleep thinking you have made a plan.

    Then you wake up in the morning, to a different day, and realise none of your plans will happen - that you will just carry on soldiering along, for love, or possibly because you cannot bear the unheavel that might come trying to make changes, or you are too tired to bother any more.....
     
  2. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    Well if I've had a bad day I just go to bed exhausted and hope the next day will be better. I don't sleep well anyway. I don't think I've had a good deep sleep for a long time. If he so much as sits up I'm awake. One time a few months ago I must have been in a deep sleep because when I woke I could hear him downstairs. I quickly got up and went down and found that he was only getting a drink of water, but I worried that he could have been doing anything. A few years ago when all this first started I walked into the kitchen to find he had put a pan of fat on and had then wandered off into the bathroom forgetting what he had done. I guess that's always on my mind.
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    Scary!!! I sleep with one ear open too. X
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,572
    Kent
    I woke one morning to find a cold cup of tea on the worktop and a slice of toast which had popped up in the toaster.
    I must have been in such a deep sleep I didn`t hear. I was so relieved the toast hadn`t stuck.

    Once my husband was asleep, I used to wind down on TP and off load all my woes. It was the only place I could tell it as it was which is what I`m reading now from current carers.
     
  5. good gosh

    good gosh Registered User

    Apr 27, 2016
    23
    Male
    Hampshire UK
    Like Churchill, I go to bed with a large glass of whisky and, tell myself to forget the world for the next 6 hours - using the most outrageous swearwords that come to mind.
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    I tend to do the same, I come on here see how bad it is for others then think well not quite so bad.
    The advice is so useful too. Does anyone use sensor pads as a warning?
    My respite is often when I hear mine is asleep. We are lucky as in a bungalow I can hear from every room.
    I sleep in a recliner, so often wake light on, iPad or book on lap.
    I suppose if I had to deal with the dangers of Kitchen wandering I could push my chair in front of the kitchen door! What fantasys we can come up with during the wee hours!
     
  7. Pop66

    Pop66 New member

    Feb 1, 2019
    9
    My hubbie and I sleep in separate rooms but I have installed WiFi security cameras in the lounge, kitchen and porch. The lounge and kitchen ones 'alert' me through the night if he is up and wandering around. I can see what he's up to without physically having to go and persuade him back to bed. I variably he is just looking around or eating! The porch one is set to alert me during the day (when I'm at work) if he goes out. I know there are some ethical issues around the use of cameras but this gives us reassurance that he's safe.
     
  8. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    Oh yes! I can get on that treadmill of thinking if he went in a home.......at least I could get some proper sleep, I wouldn't have to clean him up (double incont.), or get him dressed, I could have a quiet time to myself, I could read or watch something on TV, I wouldn't have to wash and dry 2 or 3 times a day, i wouldn't have to run out of ideas what to do as we can't go in public places anymore, and I wouldn't feel so lonely and isolated. It's like opening a can of worms, so I try not to do it. I feel selfish as I am lucky in that he goes to the day centre 4 days per week but even that isn't enough for me now. I look at him in the mornings and think if only I can do it for another year (its been 7-8 years now) then see how I am. Its a tough road, probably the hardest thing I have ever done, with loneliness being the top of the list. In all of this I haven't mentioned Richard - he is lovely and kind, but is unable to understand most things, I am not sure he knows who I am, he calls me by different names. I cannot see very much of my daughter either, so i miss her too.
     
  9. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    <<<<<<<<<<<hugs>>>>>>>>>>>
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    Love and hugs, Alice x
     
  11. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    394
    Sheffield
    It is a very lonely road. We go out but hardly ever talk to anyone as he cannot keep up with conversations and he is also deaf.

    I’m sorry you don’t get to see your daughter much, just having someone to talk to who understands makes a lot of difference.
     
  12. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    The loneliness is horrible, isn't it? His daughter came down this weekend for the first time in a year - she never once asked how her Dad was, and when I tried to say something, she just talked over me..... in my head, if she doesn't come back for another year, it will be too soon.
    I went to the Dr on Friday about my knees, and she said it was time to start looking at other solutions regarding OH. She mentioned Shared Lives as a starting point.
    I phoned them up this morning and they were very kind. As we cannot self fund they said to ring social services for a referral.
    That is easier said than done - I rang off and on all afternoon, and could not even get an answer to the call. Just got the message they were busy, and to ring off and try again..... good job it was not an emergency !!!

    Oh well, tomorrow is another day I suppose - a day of trying to work, and constantly being interrupted by himself, wanting things, wants reassurance, wanting to play scrabble, asking endless questions over and over and over..... you all know what it is like.

    The wind is picking up now as Storm Gareth makes himself felt. Our Christmas tree grows in a large pot, it fell over yesterday and smashed the pot. I threatened it this morning as I chained it to the railings by the front step. I told the Christmas tree if it flipping well blew over again, I would dig a hole and plant it in the back garden where it could whistle for fairy lights next Christmas - made me smile - but who on earth talks to a very un handsome Christmas tree like ours - shows you where dementia puts you - be even worse if the tree answered me........ just checked him, the tree that is, he is still in place.!!
     
  13. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    It's not just the loneliness there are so many other problems and having no one to talk to and share worries and fears, it's like being the only one out on a huge ocean fighting the elements. We most of us seem to find solace in the wee small hours on this site as most of us don't have the luxury of a good night's sleep. Me, I either go from no sleep to totally passing out unconscious, thankfully JH hasn't done any wondering yet, but maybe that's still to come. I value this time in the morning as it's the only quiet time I have, it's then that I cry to ease my pain and sorrow, like many of you I desperately want to go somewhere peaceful and quiet and lick my wounds.
     
  14. bmca

    bmca Registered User

    Nov 11, 2018
    29
     
  15. bmca

    bmca Registered User

    Nov 11, 2018
    29
    Ha Ha! Loved the Christmas tree story. It's just how most of us survive this awful struggle. Sometimes, it's all so surreal, you wonder that if you were being watched by a phyciatrist you would be sectioned.
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    That is an idea, three meals a day and no house work!
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    Excellent, lets go for it!!!!
    I have been ringing Social Services off and on yesterday and today - can't even get as far as the phone being answered. Just get the message that 'if the phones are busy, ring back later' - good job it's not an emergency - perhaps they are all away on holiday......
     
  18. Starbright

    Starbright Registered User

    Apr 8, 2018
    427
    Female
    @AliceA ..love it I’m in Alice....hope your now recovered from your hospital visit ...hugs A x
     
  19. Starbright

    Starbright Registered User

    Apr 8, 2018
    427
    Female
    @maryjoan ...I bet that poor Christmas tree is holding on fast just in case you put him in a hole . A x
     
  20. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    He certainly is ! He has had an adventurous life so far. When moving house my OH ( pre dementia) stuffed him and his pot into the car, leaving the boot open - we had many strange looks as it was not Christmas Tree season - and stranger looks when turning a corner the tree went in one direction and the car in another !
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.