Dementia’s journey

Discussion in 'I have a partner with dementia' started by Dutchman, Aug 31, 2019.

  1. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    i
    I found out today that my wife has got thrush in her mouth so that why shes off her food. Seems that giving antibiotics for UTIs also gets rid of the good stuff in the mouth and lets the bacteria in. Medicine being given today.

    I’m all over the place sometimes with this awfulness of this situation. It affects all I think and do. I sometimes dread going to see her because of the unhappiness she shows in her face and that upsets me.

    I have these thoughts that I can’t express to anyone apart from the forum. I think that perhaps life would be less upsetting if she passed away. Her life can’t be that happy in the home and as my wife she stopped being my friend, lover, companion and my everything some time ago. But, my goodness, I would miss her and can’t imagine ever getting over that.

    We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress
    I always thought this would happen to other people, not us.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,111
    Kent
    I don't know what to say to you @Dutchman. You sound in such a really dreadful place .

    I was as devastated as you when my husband went into residential care but I knew I wasn't managing and so it was something I faced with a heavy heart.

    He did settle. I told him the doctor wanted to build his strength up because he was becoming so frail. It gave him hope even though it was false hope and it made it easier for me

    Eventually I learnt to live with our situation . It was one of the hardest lessons of my life

    I hope the day will come when you can come to some sort of acceptance. Your wife is very poorly and needs the best care possible. You have enabled her to have this even though it has left you heartbroken.
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,324
    Yes, you describe that circle so profoundly, Dutchman. It is agony and all thoughts and sympathy to you. Your thoughts are perfectly normal, of course they are. This situation is prolonging the agony. Please think of your visits to her as investments in the future, however strange this sounds (and you know I have been through this recently myself), so that you can know you saw her as much as you could, however she was.
    with love, you are a good man. Geraldine
     
  4. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    I too am going through a very similar situation with my husband. It would be better for him if he passed away suddenly, and for his release I pray. It is the most heart breaking time of my life watching the mental torture my husband is suffering.
    My heart goes out to you xx
     
  5. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    535
    Scotland
    "We’re stuck aren’t we in this circle of guilt, sadness, helplessness and stress"

    I, too, am in this situation with hubby in care home - I had no idea it was possible to experience this level of sadness and loss. I am in tears on my way home every time I leave him.

    Lilac xxxx
     
  6. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    You know what does it for me? It’s the look of abandonment in my wife’s eyes as I go to leave. You could fill a bath with the tears I’ve cried over her looking at me when I leave. I cry but then I tell myself what will that accomplish apart from feeling sorry for myself and that reinforces the feeling that I have selfish emotions.

    I find you can never come out of this whirlwind of dementia without feeling damaged in some way. At least this time at night (22.55) I’m at peace knowing that she is also going to bed and I feel close. I just wish I could cuddle up and put my arm around her and protect her from this cruel world.
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    I don’t mind admitting it but apart from a bit of shopping I’ve spent most of my day in bed. Got a bit of a cold so felt sorry for myself. I’m out tonight for a few hours.

    I’ve also spent most of the day trying to come to terms with the fact that I haven’t been in to see my wife today. Went in yesterday but I get so upset when I see her and so upset when I leave her that I wanted a rest from these emotions. The whole business of my wife being in the home has turned my life upside down and I have feelings of neglecting her, even though many tell me I deserve a break for my own wellbeing.

    Without his forum I don’t know how I would have through so far. The Admiral Nurses have been a lifeline too. Bless you all for your kindness and support.
     
  8. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    You will always love and care for your wife and others may love and care for a while.
    Rest your mind for a second, a minute -she’s loved and being loved.
    Rest your mind for a second, a minute - you’re loved and being loved.
    Rest your mind for a second, a minute -
    you’ll always love her - as she will you.
    Rest your mind for a second, a minute -
    you’ll always think of her - as she will you.
    Rest your mind for a second, a minute - you will always be part of each other’s soul, for this is love - one soul together.
    Prayers xx
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,324
    And bless you for talking so openly about your feelings and enabling us to do so too. Warmest, kindred.
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    I went in to the home this evening to change her, clean her, get her ready for bed and she put up a bit of resistance. Bit of the old determination coming back. While it made more difficult for me to undress and dress a moving woman it showed me again how difficult it would be if this was constant all day back at our house. I attempted a cuddle and she pushed past me. She cannot comprehend now wanting to be close and loving. I stayed about 45 mins as it upsets me too much.
     
  11. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    I am so very sorry. It is very difficult to come to terms with our loved ones not wanting to be loved or returning the love we feel for them. Both my husband and mother have dementia and often turn away when I go to kiss them, it is heartbreaking and a very cruel side to this disease. We, who are on the outside, are left floundering trying to carry on as best we can whilst our hearts are in pieces. Prayers xx
     
  12. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    899
    Male
    Newcastle
    It is difficult. I was warned by staff that my wife was in an aggressive mood yesterday and she certainly was. After less than 20 minutes I beat a retreat with my sister as my wife had told us both that she did not like us. It looked likely that I was going to get thumped so we left as we were only making things worse. But I will not let it get to me as it was dementia not my wife that was talking. I just have to hope for a better reception next time.
     
  13. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    Yes, I agree that just being there makes it worse. My husband was actually in a reasonable mood today however, his much darker side suddenly appeared and I was, as usual, directly in the firing line. I also beat a hasty retreat but will be there again tomorrow under fire. Will visit mum first, so possible double trouble. Love and hugsxx
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    Hi Lilac

    In some respects
    I’m actually not in a good place this morning. Found it difficult to get up and now I’m sitting downstairs feeling very sad and lonely. My wife is away and I’m here and it just doesn’t seem fair that neither of us deserve to be apart. I don’t cry quite so much any more but there’s this deeper feeling of absolute separation that will be with me for the rest of my life.
     
  15. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    I am so sorry, I know you are in a truly heartbreaking situation. Please try and go for a walk, long or short, each day especially if you are near a park, river or sea shore. Take time to breathe, listen to the sounds. It may take a while, but let nature listen to the thoughts racing round in your head and try to help the hurt in your heart and soul. We are all with you in your journey, walking side by side each day.
    Bless you and praying for you xx
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    479
    Male
    Devon
    Has anyone struggled with the temptation to get a dog. Not for just company but a reason to get up in the morning ( I find this the most difficult decision of the day).

    I’ve tried an adult cat but after being scratched and it climbing bookcases it was returned. Never had a dog so advice would be welcomed.
     
  17. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    My dog has been an enormous help for me. I talk to him, take him out and about and nearly everyone stops to speak when you have a dog. The emotional attachment is a wonderful thing, he senses when I am upset and tearful and comes to give me so much comfort. Dogs are such wonderful companions but worth every second of our love xx
     
  18. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    553
    Female
    South East
    I have just been watching in the Doghouse (rehoming programme) . There are so many lovely dogs out there just needing love and time . They are wonderful support and yes give you a reason to get up and are always happy to see you , but they are a tie, have you read @AL60 ’s thread ? He got a dog and it’s been great for him and taking in to visit his wife . I am a big dog lover /owner so I would say yes but please give it plenty of thought .
     
  19. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    898
    Is there a chance of walking a dog?The Dog's Trust accept volunteers,there might be a charity near you.I have never had a dog but I know there are more demanding in terms of time(and everything else!)than cats.My advice would be not to rush into iy
     
  20. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    That’s such a good idea to try dog walking, pet sitting etc for a little while. Why not put an advert in a shop window near where you live - you never know !!
    Love and hugs xx
     

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