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Like a Hyperactive toddler...

Discussion in 'I care for a person with dementia' started by Rageddy Anne, Apr 27, 2016.

  1. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Sleep deprivation is an offence under the Geneva Convention. My husband, currently, is awake all day,with a few small catnaps, and keeps me busy with requests all day long. He's very like a hyperactive toddler, with his requests only a few seconds apart.

    After a period of sleepless nights, the GPprescribed some sleeping tablets, one to be taken at night, two if one doesn't work. But they become less effective over a period, so caution must be used so that he doesn't become dependent on them.

    One does not work. Two buys us about six hours, interrupted by one visit to the loo.
    After around four nights, we went back to one tablet. Wide awake around six times.

    Does anyone else have this, what I call hyperactive toddler syndrome, in someone with Dementia? And could it be helped?
  2. pamann

    pamann Registered User

    Oct 28, 2013
    Hello Anne, my husband is very Hyperactive, now in CH, he sometimes doesn't sleep for 48hrs, has not been to bed for 10months. Dr. has stopped sleeping pills as they no longer work. He sleeps for 3hrs in a chair early hrs of the morning, there are serveral residents that are the same, l do not know how the staff manage to cope with them.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Anne

    There must be somewhere where you can get some respite care. I know from previous posts how your husband has been refused care but if you still have the strength, please keep badgering SS for more support than you are getting.

    If you ended up with carer breakdown , which I have witnessed many a time on TP, who would look after your husband then? He certainly wouldn`t be allowed to stay at home alone.
  4. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    My mum was like that. I used to put her on my bed and let her talk with me. (I am sleepwalker and sleep talker) If she wanted to leave, I would wake with movement. Or I used to wake with any noise at home and run to it. Trouble is that deep sleep is necessary and I had about 4 hrs once a week (work full time and I had some respite on Saturday morning). However in some months I broke down.

    You need sleep time.

    Maybe more daycare, so you can sleep while he is there.
  5. Tin

    Tin Registered User

    May 18, 2014
    Mum is like this too. Up to a few months ago very little sleep for either of us. Night time has changed, I can now get 6-7 hours sleep. 3 things helped me achieve this; Night Rescue, Sleeping pill[occasionally] and sometimes night nurse. Or it could all have been a coincidence and her Dementia was simply moving on. Day time still the same, chatter, questions up and down activity, wow hyperactive toddler I think would be easier to deal with.
  6. marionq

    marionq Registered User

    Apr 24, 2013
    My husband was like this eighteen months ago. Zopiclone7.5 mg helped then when that weakened 50 mg of Trazodone was added. We mostly get eight hours of decent sleep now.

    Heaven be praised!
  7. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    #7 Rageddy Anne, Apr 27, 2016
    Last edited: Apr 28, 2016
    Thank you for all the positive comments...perhaps it will be temporary. Will chase up extra respite if possible,
    Someone mentioned recently a golf club, near Liverpool, I think, which has regular golf arrangements for people with Dementia.A partner counts shots and remembers where the balls have landed, so people with Dementia don't need to give up too early. What a wonderful idea. My husband can still hit a golf ball quite well, but had to give up his golf ages ago.

    I've ordered a book called Contented Dementia someone told me about. Maybe it will help. It's the Going Home pleas that are worst. What on earth can you say that will distract? He perseveres for hours.
  8. Pinkys

    Pinkys Registered User

    Nov 13, 2014
    South of England
    in 'Contented Dementia', they have an interesting suggestion. If a person perseveres with a question, you try different answers to see which answers seem to calm the person a little. note them down.

    when can I go home...not today
    when can I go home...when the car is fixed
    when can I go home...when the decorators have finished
    when can I go home...next week
    when can I go home...when you are feeling better

    whichever answer helps, try repeating it, again and again. The idea is that eventually (!) the person will no longer need to ask that question. I think there is a lot of good sense in that, but it depends on the person having a poor short term memory.
  9. MollyD

    MollyD Registered User

    Mar 27, 2016
    Hi Rageddy Anne

    My mum calls. More at night, but also during the day if you leave the room. During the day she's easier in herself with someone's presence. At night her calling can be rooted in a number of reasons. On waking she immediately hollers. It's her first impulse. It'd put the heart sideways in you. She'll then call, call, call, call a name. Mine, my dad's (who died 3 years ago) or my brothers'. She also calls "hello" repeatedly sometimes without drawing breath so it's just a walk of sound. We've had loads of medication reviews and the combination she's on now has helped. Some nights are still bad and some nights she refuses to take her late night meds. The more wakeful she is the more mum calls out of anxiety but she calls regardless, also in her sleep.

    The urgency in her tone reveals her levels of anxiety so some calling can be left unattended to peter out. It's taken time to gauge which is which. And, of course, that changes just when I, foolishly, feel I have it cracked :eek:

    With sleep deprivation *all* calling is like a pin the eye but, some calling now is just a part of my day (and night).
  10. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Thankyou Pinkys, have tried similar, but so far, nothing placates. He's always convinced the need is urgent because other people are depending on him/ waiting for him, to organise coming events, so an answer like " later today" just won't do...It's too urgent, and other people are depending on us!:eek: I tell him it's all been sorted out, everything is in place, nothing to worry about etc etc. He then usually asks where Anne is, as she needs to know so that she can contact everyone.......But when can he leave? Can anyone give him a lift? If not, he'll leave now, it's not far to walk, but he must go as soon as possible, as people are waiting.

    That's when trying to divert him is risking me being the BIG bad Wolf who's got a hidden agenda to keep him a prisoner...and he doesn't know WHO he can trust any more....:eek:

    I've learned to go into the bathroom and change my jumper for a different colour and come out smiling...Anne to the rescue! My migraine is off the scale...
  11. marionq

    marionq Registered User

    Apr 24, 2013
    RA that last entry was so familiar to me it gave a shiver. Last year was a nightmare of just that kind - the drive to go out, now, urgently, anywhere, all importantly.

    Medication has helped and though it bothers me the alternative was that he would have to go into care because once out he cannot find his way back. Missing for ten hours, found by police numerous times. Brought home by strangers - the list goes on and on. Medication it has to be to protect him and keep him at home. He has three days at a day centre and the other four I try very hard to find things of interest. Problem is that as soon as we return he forgets we've just been out! Still it's better than last year. So the meds win.
  12. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Marian, Thankyou for sharing...

    My husband has been begging to go home since early this morning, tortured and despairing. He wants to get together with his old friends, to say goodbye. It's heartbreaking, as some of them have died, and others are unwell. I'm about to give him a new double dose of sleeping tablets. He says he just wants to go.
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Its that phrase 'nothing placates' that jumps out at me, Anne. Its exactly how it is with Mil. The only thing that would satisfy her, when she is absolutely fixated on something, is that she gets what she wants - whether it be to go home, or for me to hand over the child she is desperately looking for, or for me to take her to her parents/let her phone her parents, or a whole host of other, sometimes one-off, demands. All of which are impossible for me to give her. 'Later', 'When its stopped raining', 'lets have a cuppa first', 'The child's gone home', 'Your parents are out' . . . everything you try is dismissed usually as a lie, or as not being reasonable/acceptable.

    We are just hoping that the hospital (where Mil curently is) will be able to find a successful medication/combination of medication to help ease her agitation when she gets like this. Its just so heart breaking and exhausting when the resisitance to distraction and reassurance is so high :(

    {{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}} - I hope the tablets brought you both at least some peace last night xxx
  14. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Two Zopiclone 3.75 last night bought us six hours sleep with only one interruption.
    Not sure about doubling the Diazepam, but tried it yesterday, with no discernible difference. Even today, with carefully choreographed pub lunch, just six of us,quiet conversation, brought no improvement...he only wanted to talk to me, and it was all " I want to go home", and " I don't know where I should be"..

    We know what increased Diazepam will bring, but how much distress can one person endure? And it's non stop.

    Wonderful sister in law and brother in law have taken him out for a walk, so I can sit with an ice pack behind my neck.....
  15. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Anne - my heart goes out to you. As you know my husband was like that - nothing could placate him, but he turned violent at times as well and now he is in care. He is fairly calm in the care home unless someone invades his personal space. When I visit, I am the trigger for the "going home" mantra, but he doesn't mean our home, as he says he has to see his mum or brother - both deceased. I have had a dreadful cold the last few days so haven't visited, but have phoned the care home and they say he is fine. He is probably more settled when I don't see him.

    As he was a builder, he sees the care home as something he built and is still working on, as I think he dreams he does work there and its real to him when he wakes up. At least its stopped him being in so much torment.

    I feel so bad that him being in care was the only solution to this - I really hope your husband and AnnMac's MIL can be sorted by the right medication, as the torment of your loved ones wanting to be somewhere or with someone which is no longer possible, or which don't exist, is heartbreaking to witness and impossible to deal with.
  16. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013

    Maybe I'm just getting more used to the need to be inventive and on the go all the time. After seeing husband frightened and suspicious that everyone, including me, were conspiring to do him serious harm, I decided to stop the Diazepam...and haven't seen that sort of anxiety since. Double Zopiclone last night helped get us a peaceful night.

    Some of our respite failed too, so I'm mightily grateful for today, a whole 24 hours without any Dementia to deal with.

    So, what did I do? Well, I just got back from seeing a play called The Father, all about........DEMENTIA! It was brilliant, and if anyone gets the chance to see it, I do recommend it. It depicted Dementia from the point of view of the sufferer, and my friend and I, both with husbands suffering Dementia, found ourselves wanting to protest when a Carer kept saying all the wrong things. Presumably that was the idea.
  17. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Have stopped the Diazepam completely, as it seemed to me my husband was more afraid and often in a frightening rage only after that medication started. Both things uncharacteristic.

    The Consultant asked me to keep him updated, which I did, and he agreed that stopping Diazepam made sense, and to increase the sleeping tablets, Zopiclone.

    My husband had started referring to taking his own life. And returned to that subject more and more frequently, until last evening he seemed in earnest, calmly begging me to help him end it all...He couldn't be distracted, so eventually I picked up the phone, and rang the GP, who actually rang back, and promised to come round. Which he did, and although they just talked, I think my husband finally realised he was making a mistake.
    By some miracle, our son rang while the doctor was here, suggesting he and his wife come over today, and stay overnight. I'm so relieved.

    There's some suggestion of possibly starting another antidepressant, but I'm reluctant to keep experimenting, when all he needs really, is one to one care, non stop.
  18. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Anne, I'm pleased to hear that your son and his wife are coming over.....please take yourself out for a wee while.
    I know that Diazapam can foster delusions, so removing that might help.
    And sadly, you are going to have to pester everyone for respite....

    Oh I wish I could help....x.x
  19. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    The GP said he'd ring today after he's read up about yet another antidepressant.

    The lovely friend who helps us by regularly taking over from me has done some prodding, because he thinks we need more from the Consultant than a different antidepressant......

    The family rallied the troops at the weekend, and we had a lovely day on Saturday, just a quiet day enjoying the sun in the garden, absolutely no shopping or cooking for me, and my husband being comforted by having all his closest family here. Some stayed the night, and Sunday was also peaceful and pleasant. They managed to help him cheer up a little, and he even played some boule. But soon he was worried and distressed again, and continued to be more and more anxious until an extra sleeping pill finally worked.

    I can see the family are worried about us both. I've arranged for a local Care home to come and assess him for some respite, and have explained that he needs one to one care. Fingers crossed, as he was sent home after an hour and a half when we last attempted respite care.
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I do hope your local home has more compassion Anne and is skilled in dementia care. If the presence of close family can help your husband have a more peaceful day so could the staff at a good care home.

    I realised once my husband was in permanent residential care, the task of primary carer was too big for me, as I was so worn down I was unable to meet his needs. The care home staff on shifts and able to get some normality in their lives gave him a much better quality of life and he thrived.

    It was the most unexpected part of residential care ever and such a bonus for both of us.

    Your family is worried about you both for a reason.

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