1. AliceA

    AliceA Registered User

    May 27, 2016
    2,463
    I know how frustrating it all is, I do feel trying to prove a point is a bit self defeating, any thing that confronts takes more effort than a 'teflon' answer.
    You are late........ Sorry, things took longer than I thought, never mind I am here now.
    Is that you? Yes, everything is all right, just turn over an go back to sleep.
    I find what is being asked for is your presence or even anyone presence. dementia is a lonely place for all concerned.
    Sometimes when my husband sleep I do things I want but I am lucky the home is small and compact so it is easier to be 'there'.
    I also top up assurance when I can, I thank often, I touch as I pass a chair, I kiss the top of his head.
    Small loving gestures that reassure and enable. I know this may not always work, but a softer tone can soften the situation.

    If this goes against our nature, play a role like an actor until it becomes a habit.
    Sometimes when I have to do something I find difficult I Act It Out as if not me.
    Difficult phone call? Sit to desk or table with paper, pen, diary etc. Do it as if I was doing it for someone else.
    I have always found it easier to fight another person's battle rather than my own.
    Now this is our battle so having to do it for two with the depleted energy of one.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border
    I feel as though it is a case of 'here I am again moaning and groaning' - but I can't sound off to anyone else who would understand....

    If you recall, OH has stoma he doesn't understand and dementia.

    Last week he admitted to getting up in the night and carrying out a prolonged bathroom routine, 'for something to do' when he wakes in the night. He does not actually need the bathroom.

    Now he has started staying up later and later at night.

    Last night has left me feeling completely exhausted and unable to function properly.

    Remember we live in a bungalow, so all rooms very close to each other

    I went to bed at 10.45 - he had already started on his many Horlicks before going to bed - he will not stop doing this.

    1.00am - the TV is still on loudly - this wakens me, and I worry that he is OK - he is !
    1.30am - I waken and realise he is in his own room, playing patience or something

    2.00am - he finally goes to bed, clattering around and making a racket in the bathroom.

    4.00am

    he is up and in the bath room again, routine which is long and complex, and noisy - my bed head is against the bathroom wall - there is no where else I can put the bed in my room.

    6.00am

    he is up again and clattering around in the bathroom

    7.00am

    I get up as I cannot sleep and take him his coffee.

    He gets up, decides he will finally have a shower - snow stopped him on Friday - and he only showers twice a week anyway - but he cannot do this until the carer gets here at 11.00am

    When he gets up, I notice a towel across his bed. Turns out he has wet the bed and just covered it over with a towel and got back in bed.

    He is stroppy, and I am tired. and it will be the same tonight, and tomorrow and the same for so many of you out there. But this is the first time, for me, that he has wet the bed, and it just seems to put the tin lid on everything.

     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,001
    N Ireland
    The bed wetting may not be regular. With my wife it has only happened twice in the last 14 months.

    Watch out for it being caused by something like a UTI. If he seems more confused etc., and needs to pee more often it could be that.
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,430
    East of England
    @maryjoan tons of sympathy and support for you, ghastly and exhausting. Moan away as much as you like, I am really feeling moany after a difficult evening but I don’t get woken in the night or I think I would collapse. I think I am right in saying you are at a certain age, I am too and beginning to feel it. I went for a walk while he is back in bed after a late rising morning so I guess it will be another bad evening. I really struggled round 1.5 miles and thought this is ridiculous.
     
  5. Lady M

    Lady M Registered User

    Sep 15, 2018
    292
    Female
    Essex
    Not a reply but likewise a rant!
    10pm last evening OH has a carer call to undress and assist to bed! He comes to lounge with her ‘ not going to bed on his own! ‘ so I prepare for bed whilst carer updates the care book!
    The minute she is gone OH states I’m glad she gone I’ll now go to the loo!
    I explained he is to go when she is here, following all his falls! Also what we pay for!
    Then followed another night of jerking around , the bed jumping , etc, then up to go to the loo ( suppose to use bottle) , heard a bang, had he fallen again, No ! Got him back to bed. He went back to sleep Iwas up reading TP etc, crawled into bed, resting , he’s up wanting the loo again, sort him out I am up, then. 5.50am.
    Face another day, knowing it will be the same as yesterday, the same again tomorrow!
    Is it worth it!
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border
    Exactly - is it ever worth it? This is 'Care in the Community' - keep them in their homes - but at what cost to us???
     
  7. mickeyplum

    mickeyplum Registered User

    Feb 22, 2018
    98
    My OH goes to bed at 10pm, I go at midnight. He has for as long as I can remember had a ritual of checking that the doors and windows are locked before he goes upstairs. But since dementia, he has started adding other little things, like checking the living room curtains are closed properly and checking the downstairs cloakroom and behind the toilet.
    His rituals are taking him about 10 minutes to complete, especially now that he has to look behind all the chairs and behind the TV every night. I jokingly asked what he thought could be there and his answer was, 'No harm in making sure.'
    I assume this is due to his anxiety, and the vague memory of once upon a time being the man of the house who took care that our family was safe and sound through the night.
    The more I see of these 'behaviours' the more I understand that they are normal in dementia sufferers, which makes it a little easier to have patience...sometimes!
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I’m getting quite selfish now over my time alone when wife has gone to bed at 17.00. I say please stay up and share some more tv together but really I’d like to be on my own....tv, write to you, etc. It’s an escape from the routine drudgery. Thanks everyone for the useful advice. I wish I could offer some back on some of the issues you all have. I’ll be there later for you all I promise. Now, while I’m on, can I ask about carer assessment. I can’t get out or have someone come in so can I do this online. The council are about contact me so I need to know what can happen. All my best wishes. Dutchman aka Peter.
     
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border
    My Carers Assessment was done at a time to suit me - on the phone - would that be an option for you?
    (((Hugs)))
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,430
    East of England
    Wise words @mickeyplum as he embarks upon his evening rituals having been in bed a lot today. I have been a bit more patient and vigilant tonight and so far I am managing to stay calm.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Thanks, I’ll ask but even that is difficult as phone calls are easily suspected. My best option is the email if that’s an option. Why is life so like walking through treacle? Bless you .Peter
     
  12. Lady M

    Lady M Registered User

    Sep 15, 2018
    292
    Female
    Essex
    Your expression ‘ walking through treacle’ how apt.
    It’s a new one to me!
    Hope you’re able to get something sorted asapx
     
  13. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    249
    Central Scotland
    I usually call it 'swimming through porridge'. We had our assessments at home - OH first at the kitchen table, then settled him at the TV with a cuppa and I had my carer's assessment in the kitchen. He only came through once to see what was happening.
     
  14. Lady M

    Lady M Registered User

    Sep 15, 2018
    292
    Female
    Essex

    Hi Wifenotcarer,
    Thanks for your reply!
    I am not so much concerned about the assessment but
    Could you let me know what you gained from having the Carers assessment!
    Thanks
    Lady M
     
  15. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    249
    Central Scotland
    Could you let me know what you gained from having the Carers assessment!
    Thanks
    Lady M[/QUOTE]

    I was assessed a year ago as needing 2 days a week of day care to allow me to get out and about and have some time to myself without OH. Also granted 6 weeks of residential respite care for OH. Whoopeedo! I thought, but the reality is that it took months for one day of 10am till 3.00pm day care to become available, still waiting for the second day. As to the respite, I have had 1 full week and 2 long weekends so far. It is very hard to organise as there is seldom availability on the dates I want. There is of course a charge. The 7 day one cost £800 (that is with the 20% discount for Free Personal Care because we are in Scotland). So OH's respite stay cost way more than my holiday.
     
  16. Lady M

    Lady M Registered User

    Sep 15, 2018
    292
    Female
    Essex
    I was assessed a year ago as needing 2 days a week of day care to allow me to get out and about and have some time to myself without OH. Also granted 6 weeks of residential respite care for OH. Whoopeedo! I thought, but the reality is that it took months for one day of 10am till 3.00pm day care to become available, still waiting for the second day. As to the respite, I have had 1 full week and 2 long weekends so far. It is very hard to organise as there is seldom availability on the dates I want. There is of course a charge. The 7 day one cost £800 (that is with the 20% discount for Free Personal Care because we are in Scotland). So OH's respite stay cost way more than my holiday.[/QUOTE]
    Thanks so much, not sure if things in Scotland are different from other parts of Uk but glad you got something out of it! Long may that continue!
    Regards
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border
    Thanks so much, not sure if things in Scotland are different from other parts of Uk but glad you got something out of it! Long may that continue!
    Regards[/QUOTE]
    This Carers Assessment sounds exactly like mine - they say 2 days a week, they say 6 weeks a year - but the actual fact is that it is all pie in the sky/ The facilities are just not there where I live. A Mental Health Team worker told me I would never find respite as all the Care Homes and Nursing Homes want to be full every day of the year - they don't want to keep rooms for respite, that may not always be used.........
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,463
    Carers Assessments are so very different in England. No respite allotted!

    I had two over the phone then the third in person, these are council funded so the contract for the third was by the Alzheimer's society. I am now booked for a yearly one..
    The latter one to one at home was brilliant I felt really listened to and the information was so good. A book about dementia, she researched breaks, she rung organisations and followed up. I can ring her too.
    Knowing that means I do not need to.
    This gave me a clearer vision on possibilities.
    I still have not had a break because we live in a 'dessert'.

    She chased up a direct payment, not much this year but it will provide a treat. I am playing with ideas on what to spend it on, I will spend it several times before I part with it! I toyed with a subscription for monthly flowers.
    or 7 taxi trips to town, or refresh my wardrobe a little? A spa day seems too ambitious as I would have to get a sitter and convince my husband it was needed.

    I think she confirmed I existed and it ensures I am on the system, I was doing a better job than I thought and showed me what my options were.
    Looking at these and coming to dead ends has confirmed to me that my respite is best in the quiet hours rather than in the upheaval of breaking a routine.
    Not for everyone but my age has cracked in here, I am not so physically able.

    Do try for a face to face one, I got mine because I phoned the local Carers for advice and a kind word had me in tears. I probably sounded quite at the end of my tether.
    The phone ones were good but not specific to dementia related problems.

    Previously I was offered, a gym course, a choir but no sitter or transport and not really for me!
    I have got a card to carry saying I am a Carer, I am registered as a Carer, my medical notes say I am a Carer.
    When pressed it allows me to stamp my foot and say I am a Carer and therefore I cannot .........

    In some ways this is quite nebulous but my husband's needs were considered when I had a fall, the medics looked after him and ensured he was in safe hands.

    I was signed up for emergency care for him at home until arrangements could be made. I have not used this service.
    I am pressing for a needs assessment at some point, this us because lack of transport has made life difficult.
    I have a bus pass but no bus!

    Do go for it I feel it is a way for hidden Carers to be counted. We need to become more visible.
     
  19. Lady M

    Lady M Registered User

    Sep 15, 2018
    292
    Female
    Essex
    WOW!
    Thanks I will read and digest a bit later.
    Likewise, what would I want to do on my own! When always been part of a couple!!!!!
    I did like the idea of the flowers though! I miss the fact OH frequently came home with flowers for me! Oh happy days,
    I feel I have so much to learn about this road I didn’t want to go down
    Thank for takin* the time to reply
    Sincere regards
    X
     
  20. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border
    This road is one that we are all travelling together - unwillingly on a journey we never wanted to make - we hold on to each other for support, or else we will all fall over! Just my thoughts
     

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