Does anyone else feel like this.

Discussion in 'I have a partner with dementia' started by Francy, Sep 15, 2019.

  1. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    I've been absent from the site for a while. I have been trying to come to terms with my husband's Alzheimer’s. I've had some counselling which helped and JH is on Donepezil which took about four months to really make a difference. I don't know what is going on now but he is so argumentative and agitated especially in the evening, having tantrums. This is how I feel, it's like I've seen someone drowning and I've jumped in to save him, he can't swim and I'm desperate to keep him from going under, but he's struggling and pulling me down and we're both drowning together. No matter how hard I try, it's never enough. I'm tired.
    Francy
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hi @Francy That description of a drowning pulling his rescuer down with him is very apt.

    It sounds to me as though he is sundowning (a period of increased confusion and agitation - usually in the evening and night). You can get medication to help the agitation. Go and see your GP and ask for a referral to the Community Psychiatric Team for assessment.
    You wont be able to help him if you drown too.
     
  3. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    I had thought it might be sundowning, just not sure because it's being argumentative. I have managed to try and make outings for us using the community bus service, but he has taken a dislike to one of the drivers and won't go out if he's driving and I just don't know who the driver is until they appear, so the arguments start. I tell him that's OK he can stay at home, but he won't on his own and won't have anyone in to sit with him, so he has doesn't want me to go out. I've just started an exercise class to help my arthritis, which is really painful, and this is what he's not happy about, I'm being selfish going out once a week for an hour. I'm trying to make a life for myself and for JH, trying to make the most out of what we have left. I know I'm not alone in this, many of you feel the same, being at home all day every day with someone who is sullen, miserable, detached and doesn't speak much is difficult, so I'm trying to make things better for us both but keep bitting a brick wall, and that's why I feel like we're both drowning.
     
  4. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    234
    Because he is ill doesnt mean you have to serve his every whim Francy. Go to your exercise class! Tell him the doctor has told you that you need to go! But also you need to get out without him, even if it means paying for a sitter to come in, or putting him in daycare once a week. Its no wonder you feel you are drowning if you get no 'me time'. PWDs are very demanding to be with
     
  5. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    That’s such a good analogy, that’s exactly how it feels, my OH is always worse at this time, I dread it
    It starts about 9pm, asking the same questions every night, am l his wife, do we live here, how long have we lived here, over and over again! still at it now and we came to bed an hour ago!
     
  6. Lirene

    Lirene Registered User

    Sep 15, 2019
    103
    Mum has Alzheimer’s she is 96 my husband has advanced Parkinson’s and dementia he’s 80. I can’t do right for wrong with either one! My husband is in hospital after broken hip 3 months ago and now with a Periprosthetic hip fracture. He shouts at me in the ward. Everyone says just ignore what he says but unless you are going through it you have no idea how hard and upsetting words can be.
     
  7. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
     
  8. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    I totally understand and get it. My husband can be so cruel to me at times, even though I know it's not him it's the illness, I still feel like I've been physically punched in the stomach, words can injure just as bad. I spend much of my time fighting off the depressed feelings I'm left with. I feel your pain, it's difficult to ignore no matter how hard we try, it can still get through our defences. I seriously had no idea of any of this until I started to live with it, so you're right, you need to live with it to truly understand. I'm sorry for you have double the pain, the only thing can offer is a virtual hug and I do give lovely big strong hugs, so this one's for you, take care XXXX.
     
  9. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    Thanks you Roseleigh, I have told him the doctor said I need to do this, not a lie, in his head he doesn't see it that way. I don't know you're in pain, I don’t feel that pain, how would I know, I can't feel it and so it goes on. I'm soon to have a carers assessment and I think things may change then. It's so sad but JH just doesn't want me to be away from him, I'm his safe person, but I can't go on like this. I really do feel like I'm drowning, suffocating, he's destroying me and my lovely husband who once was would never have done that, he can no longer see past his own needs and wants, therefor I too must put myself first in this instance. I feel like giving in, I usually do, but no not this time. It's a Tai Chi class and a small group they are a lovely group and it has really lifted my spirits and helped my pain. I take JH with me l as he won't stay at home on his own. He has decision to make stay or go. Thank you for caring XXXX
     
  10. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    Hi Fishgirl, yes I'm getting to dread the evenings, it just comes from nowhere, usually starts at teatime, then he'll be quiet for a while when he watches TV and then starts again and he's horrible to me. I can't wait to get to bed to get away from him. He watches TV on his own, always did and he's safe and OK. I need to lie down as my back is bad and very painful. I dread when I can no longer do this. XXXX
     
  11. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    234
    Goodness do you still share a bedroom? I wouldnt consider that any longer. I need to read in bed, play on my phone. Time for you to move out I think.
     
  12. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    I'm with you there, my bed room is my sanctuary, I can wait to get there at night, it's an island of escape and I to watch TV, it's the only time I get to watch what I want and be on my own and in the morning I can relax, meditate with a cooling eye masque on and prepare for what lies ahead. Would recommend own bedroom to everyone, it may be the place to have to yourself except the toilet.
     
  13. Lirene

    Lirene Registered User

    Sep 15, 2019
    103
    Thank you so much xx
     
  14. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    Oh no no no!:) We don’t still share a bedroom, I moved into the front bedroom about 2yrs ago! Like you say it’s my sanctuary , but he still keeps coming in bombarding me with questions until I loose patience and make him get into bed, like he’s a little child! So sad isn’t it.:(
     
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    504
    Female
    Basingstoke, Hampshire
    We're in a two bedroom flat but the second bedroom is too small to include a bed now that I have a desk and my craft stuff in there. I just hope I can manage things as they are as I couldn't bare having to get rid of my crafting and my desk. It's my sanctuary.
     
  16. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    234
    I get the same in the morning. He is happy to go to bed at night but wakes ridiculously early , 5.00, 6.00, knocking on my door, or talking outside, or barging in, also toddler like behaviour.
     
  17. Justmary

    Justmary Registered User

    Jul 12, 2018
    63
    Female
    West Midlands
    I'm still in the main bedroom with my husband, but I had started to feel quite uncomfortable being in the same bed, so I've changed the double bed for two singles. It feels better. I am quite lucky (ha ha) in that he takes himself up to bed around 9pm, and that gives me the whole evening for "me" time. My tv, a glass of wine, chocolate and of course, TP. I never want the evenings to end!
     
  18. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    Hello Jenniferjean, I totally under that. I had to give up my crafting not due to lack of space more lack of me time, my time is spent mostly caring for JH, very demand at times and I do get out to walk for a little while, weather permitting. Also we used to do the craft fairs, which we both loved but obviously that had to stop to,we both miss that very much, there was a lovely community feel to it. You must keep up with your crafts as long as you can, it is great for escapism, it is wonderful do something creative, I hope you can enjoy for as long as possible. XXXX
     
  19. Francy

    Francy Registered User

    Dec 3, 2018
    70
    Female
    Co Down
    Hello Justmary, sound to me like the next best thing, long may it continue, enjoy what you can, while you can. XXXX
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,626
    It’s odd isn’t it that the nearest & dearest get the worst bits, yet the infrequent visitors are raised to god like status!
     

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