1. Lladro

    Lladro Registered User

    May 1, 2019
    74
    An extract from my diary, written tonight - which someday I will read back to myself and cringe:

    Well we had a real humdinger again today. It started at around 6pm and finished at 10.20pm. She would not let go of wanting to go home, wanting to call “her husband” to collect her from “this place” “Why am I holding her hostage” and “am I going to throw her out onto the street” etc etc

    I lost it big time. I shouted and bawled at her. We had banging doors. I had a major headache. She just would not give in until eventually she got into bed and fell asleep. I really really hate myself for the person that I have become. I am ashamed to say that I resent her. All this **** about not being their fault is clearly written by someone who has not gone through the reality of the constant nightmare that is bloody Alzheimers. It may not be their fault and they may well have a brain failure - but they are the human being stood in front of you who you have loved for 30 years and now resent. They are the one who is saying these things. I am the one who has turned into a bloody horrible person. I am sleeping downstairs tonight - I can’t bring myself to lie down beside her, even though I know its not her fault and tomorrow she probably won’t remember what happened. I am so sick of this.

    Tomorrow I will feel differently, I will gather my strength and then it will all start again. As long as I live I will never, ever, understand this.
    I feel so down and just want to cry - but I CAN’T EVEN DO THAT


    Sorry folks - clearly feeling sorry for myself and need to get over it
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,735
    Kent
    All I can say @Lladro is I know how it is. It was a nightly occurrence in our house and the most difficult period of my life.

    My husband`s `real wife` was waiting for him. His stuff was packed into supermarket plastic bags, which were all he could find, and when he fell asleep exhausted, I unpacked the bags and put everything away so he`d have no recollection in the morning.

    It was exhausting for both of us.
     
  3. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    209
    Male
    South Northwest
    It's little comfort but the stage you're at is probably the hardest stage to deal with. And most of us have done exactly what you've done... vented steam. Probably more times than we'd dare admit. Some folk with dementia would test the powers of a care home full of staff, let alone a loving family home staffed by one.

    For the two years or so that my mother was routinely in 'going home even if I have to break this effing window' mode I had limited success with a few things.

    1) We're going first thing in the morning, I promise. I've got a taxi booked/it's too late now/I can't afford the prices at this time of night/the Police have warned people not to go out tonight because of a storm, etc.

    2) Ok, we'll leave right now... and we'd walk, and walk and walk until toilet stress got the better of her and she's agree to come 'to the nearest toilet'. I had to stop going out at night though because if things went noisily wrong it wasn't fair on other people trying to sleep. If I was a driver I'd have driven her round in circles until she fell asleep or calmed down... motion would usually calm her for a while at least. Tried it on buses a few times, but public transport and someone with dementia in frustrated mode isn't a good mix.

    3) Lorazepam! Gawd bless the chemical kosh and all who fail on her. Half a milligram buried in a biscuit, or piece of fudge, even if chewed up, would usually calm her down enough for some kind of sanity to return within 20 mins or so. If that failed, another half milligram in another snack... if the snack will be eaten of course.

    Maybe some of that will help. But now I've written it I realise there's part of me that would welcome that version of my mother back now. At least she was connected to the past she wanted to return to then. Now... now it's bed time. Hope yours -- and everyone else's -- is peaceful.

    One thing I will quickly add though is that I've recently been testing some ridiculously expensive premium CBD oil (£200 for 10ml of the concentrated form) on my mother. I give her two drops morning and night in a hollowed piece of fudge to disguise the strong taste. After two periods of use, with discontinuation in between, I'm prepared to make a tentative claim that she is observably more cheerful and relaxed when on it. It's not a miraculous change, but it's better than the continual restless grumpiness which is her natural demented state.

    I'm reluctant to post much about it yet because I want a longer period of evidence, and she may be a bit more unsteady on her feet when on it, which isn't at all desirable. But she seems wobblier on her feet in general these past few months, so it's hard to be sure. I think folk in your position deserve a little hope though. I'd have killed for something which helped my Mum (and therefore me!) back in her miserable, raging years.
     
  4. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Thank you both for your kind words - It really does help and I am very grateful to you.
    Some good advice too.
    This morning arrived and I was really "down" - however, picked myself up, we went out for the day - she is happy for the moment bless her little cotton socks and I don't have a headache - Yet!
     
  5. Vic10

    Vic10 Registered User

    Feb 18, 2017
    70
    I’m sorry, I have no advise but my heart goes out to you. Hoping you have many more better days. xx
     
  6. Lirene

    Lirene Registered User

    Sep 15, 2019
    108
    My husband is testing the hospital staff to the limit. They keep saying ‘don’t know how you’ve managed for so long, without help’. You do it because you have to, there is no one else without you they would be absolutely lost.
    It is so very heartbreaking, my thoughts and prayers are for you both xx
     
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    I had a long talk with The Samaritans the other day - never thought I would have to ring them, always saw myself as someone who could cope...... at the time I did not think ringing them was doing me any good - but, I have felt better in my mind since I did.........
     
  8. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    250
    LLadro my husband is very much at a similar point to your wife , I never know when he is going to 'flip' or how long the psychotic mode will last (he hallucinates as well as being horriblly rude to me, as your wife is to you). I like you have lost it many times and started shouting back. I am now trying a somewhat different tactic of withdrawing. I leave the room or if he follows I get on with something. I remind him that I am not going to talk to him if he is rude and abusive. I try some distraction such as would he like a cup of tea and listen to some music but if he says NO (rudely) I just say fine it doesnt matter. If he keeps on I go out , a walk, shopping, and leave him to stew (I am lucky he never leaves the house alone or that wouldnt be possible). On return Ill offer a cup of tea as if nothing's happened. Its usually accepted politely at that point. If a meal is due I dont allow him to eat with me unless he stops shouting and being rude, but after I offer him the opportunity to eat alone.
    So far it seems to be helping, and at least it helps me feel I am in control and have a way to manage this rather than feeling like a victim. Its rather as one treats a toddler I know.
     
  9. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Hi Andrew-MCP, thank you so much for taking the time to write your post. It made me smile and laugh as well as gave me some ideas! Each time that I feel really down, I come onto this forum and some stranger helps me, in some small way, pretty much every time I venture onto the keyboard. Thank you
     
  10. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Hi Roseleigh, thank you so very much for your post. It helps to know that there are others in a similar boat and its always interesting to read how other people find ways of dealing with situations . I find that if I threaten to go out of the door (which I have on a few occasions, even putting my coat and shoes on ), then my wife will automatically become almost hysterical and not want me to leave her alone. So this tactic does not work for me and when things escalate , I am between a rock and a hard place because I can't go and its hell to stay. I am trying to keep my voice calm and answer in a gentle way, however I only seem to be able to keep this up for a period of time before my button is pressed and I become the shouting man. I'm not really aggressive by nature, but I still can't believe how much I shout when I recollect it afterwards and its an awful feeling. When you mention treating them as a toddler - this rings a bell with me as that is exactly how it seems sometimes . Will keep trying. Thank you again x
     
  11. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Hi Maryjoan, Thank you for sharing that with me - I had never really thought about that. Maybe its an option when I feel close to the edge of reason.
     
  12. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Thank you Vic10, I am counting the rainbows - not the thunderstorms - Tricky, but important x
     
  13. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Thank you Lirene, Its so nice to have a complete stranger say that to you - It really does help and makes the heart feel good. xx
     
  14. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    It is hard to treat a 6'2" tall man as a toddler - but I am learning to - I feel so certain that if we, the carers, can change our mind set we can cope better - but it is horrendously difficult to do.
    I am trying so hard to convince myself that I am a housekeeper here - there is no love, no affection, just a rather large man who looks like my erstwhile lover, but is not. I keep house, I care for him, and my wages are a roof over my head ( we rent)
    Is he like a toddler, am I the housekeeper? I am getting there slowly - it's taken 3 years up till now, I will see if I ever get there.........
     
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    514
    Female
    Basingstoke, Hampshire
    It is hard but we have to. On Thursday we have a community bus take us to a supermarket. On our way from supermarket to bus I'm having to urge him to keep going as he slowly plods along with his walker. If I don't he'll just come to a halt and stand looking around at what's going on. I heard a woman say "oh the poor little love, he's doing his best. You take your time love".
    Well I'm not being a bully, I'm doing exactly what a mother with a toddler would do if on a timed schedule. I bet she wouldn't have said anything if he had been a toddler.
     
  16. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    I know, it's so sad, I don't go to the supermarket any more - I get Tesco's to deliver, but one becomes in danger of being institutionalised in ones own home.......
     
  17. Avis

    Avis Registered User

    Nov 2, 2019
    42
    Hello LLadro. My husband is not quite at that point yet but he can barely walk, is incontinent, impotent, has breathing and swallowing problems and his dementia is on and off like a kid playing with a light switch. By afternoon he doesn't know where he is, can't find his way around the house, wants to go home, sees people and things that aren't there and gets quite bizarre. I feel guilty when I yell at him after I have tried to get him to do something, or not to do something, and after many tries he just goes ahead anyway. He smears feces all over the toilet and denies that he has done it among other things. I get really frustrated. A good night's sleep is rare and I am very tired. So I understand where you are coming from. It can be hell. My nephew looked after his wife for 18 years but ended up putting her into an Aged Care home for both their safety. If it gets too bad see if you can get your wife into respite and give yourself a break. It sounds like you need it. (((((hugs)))))
     
  18. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    514
    Female
    Basingstoke, Hampshire
    I agree that's why I like to take the community bus as it gets me out. Most of my shopping I do get delivered, but it is nice to mix with others on the bus. They all understand how things are with my husband, but it just takes one unknown person to say something that they know nothing about to wind me up.
     
  19. Lladro

    Lladro Registered User

    May 1, 2019
    74
    Hi Avis, oh my word, it sounds like you have an awful time of it. I really feel for you. Thank you so much for taking the time to try and help me. Loads of hugs back ((((((hugs-loads of)))))))
     

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