Dementia’s journey

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

  1. kindred

    kindred Registered User

    Apr 8, 2018
    2,319
    I do sympathise, Peter, empty house can be so hard in many ways. You had no one to reassure you at the time you had to make the arrangements. You will be free of these thoughts, or they will not affect you so badly but of course it takes time and you are in limbo and the thoughts crowd in.
    It seems to me that there are certain stages, not inevitable, but pretty common, in our carer ordeal.
    Coming to terms with the diagnosis
    Staying in touch with life outside the home
    Getting increasingly isolated
    Coping with more and more challenging stuff
    A crisis of some kind bringing up the question of residential care
    Coping with our loved one in residential care
    Learning to cope with an empty house etc

    I so wish you had had support at the crisis time, it has left you with uncertainty and regret. In my case, the medical team at A and E, their first words to me were simply
    He's not coming home.
    And a best interests meeting almost immediately called said the same thing, equally firmly. You had to decide and react alone, and that is so hard. I believe you acted responsibly to a terribly tough situation. I wish you could accept this. You are a good man.
    all fellow feeling, Kindred, Geraldine
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    Thanks kindred . I want to reply more fully but at the moment I’m busily making beds ready for the onslaught of family. Reply to you soon
    Many blessings Peter
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    Dear Kindred, you are so so kind to take the trouble to reply to my post in such a considerate way. You are good at understanding how our emotions can effect us and you are excellent at taking the time to reassure me, put things into perspective and generally make me feel better in myself when I’m being completely negative .

    It was hard leaving the home tonight because she didn’t want me to leave and I’m always left with the fear that she’ll fret and be unhappy when I miss s day. I pray everyday that on the days I don’t visit she.is calm, not anxious and fairly contented. Of course I’ll never know because she cannot tell me. I just know that when I do go she looks pleased to see me

    I miss my darling so much.

    Thank you once again and loving kindness to you.
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    Went to the home and the word ‘palliative ‘ was used for the first time. Bridget isn’t eating enough and we all know the outcome of that . She refuses food and only occasionally drinks high calorie drinks.

    Its so hard having to watch this happening knowing that her time is limited if this carries on.
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,319
    Peter, I know this is so hard. The key will probably be her drinking some high calorie drinks and her nurses will be putting their focus on that, I think. These can maintain life and then sometimes people pick up again. I have seen this happen a number of times. I know how much you miss your darling one. All my sympathy and fellow feeling. I am on my knees with grief sometimes but we somehow find the strength to carry on. Your open posts give so much courage to others to say how they feel. Thank you.
    warmest wishes, Geraldine
     
  6. charlie10

    charlie10 Registered User

    Dec 20, 2018
    390
    Thinking of you @Dutchman....love and strength to both of you x
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    There are times when I think I’m doing ok and then something trips me up and I break down and cry ‘why us’ , why did this have to happen to us when you see other couples enjoying just getting old together, enjoying simple things.

    This time it’s when I cleared the garden this morning and we used to talk about plants and planning together to buy stuff. I walk back inside and it hits me, the loneliness of it all.

    Bridget never deserved this dementia and now she’s in a home which, to be honest, I’m beginning to dread going to sometimes. It all just reminds me of being apart and, although the home is caring and she’s well cared for, that’s where she’ll stay.

    I really mean to think hard in the new year of getting a pet to replace my cat who died two days after Bridget left. We’ll see.

    Thanks for reading my post . Peter.
     
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,609
    Female
    England
    It’s very hard @Dutchman, doing things alone when for so long you did it as a couple. I too found days when facing the care home and the realisation that that was my husband’s home hit me hard. Then I’d go and sit and think it’s my home too now, Home is where my husband is.

    I’m in the middle of what seems a never ending job of painting. A task we always did together where I would break off to make the drinks or a meal and my husband painted on. I’m painting alone now, a break for a drink or a meal stops the painting and then I don’t want to start again. Hence what should have been days is taking weeks and this happens with all the jobs around the house. The together part of life kind of breaks and it is hard, my husband was in nursing care for four years and it’s bed. A further three and a half since he died and that together no more is hard especially at this time of year.

    Please don’t beat yourself up, you matter just as much and everyone here understands your feelings.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    I go to a counsellor once a week who is a great help but I consider the forum and all the contacts I’ve made my counsellors as well. Being in the same situations (differences accepted) we all know the pure heartache and emotional trauma this creates. Love to you all. Peter
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    I have to get this out.

    Just come back from the home and as usual I feel unhappy about leaving.
    This time my wife says to me ‘can’t we go back to your house’ and ‘ being here, it’s not right’ . It just kills me hearing her say these things and I feel again she’s not happy there but what can I do ....nothing. I have to tell her a little lie so that I can leave.

    It’s all so desperately sad and sends my emotions into a spin. Problem is I suppose is that she doesn’t feel ill, just confused and that makes her anxious.
    I’ll give the home a ring tomorrow to see if she’s ok.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,093
    Kent
    It`s heartbreaking.

    Has your wife ever said the same when she was at home with you @Dutchman?
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    She had said about a year ago that she wanted to move out of the house nearer to our daughter. I was very upset at the time because she and I loved our home and she was at a stage where she just wanted to move. Got quite aggressive about it actually.

    Whether she is experiencing similar feelings I just don’t know. Anyway I phoned the home later and they said she was fine . I can do no more.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    I’m so upset because she wouldn’t let me do anything for her tonight, no changing, no washing and I feel redundant. Physically strongly not compliant. The staff say she’s been aggressive verbally and she not eating enough. Plus she says I want to go home and I’m just about coping with the depression of all this.

    Oh ,and another thing, spent yesterday with my exbrother and sister in law who are completely useless at any empathy with my situation and feelings and spent the morning telling me about their stupid new kitchen and colour of their hallway . Could wait to escape.

    Just had to get this written down to get it out. Thanks Peter
     
  14. marshal

    marshal Registered User

    Sep 6, 2017
    58
    Female
    Hi Peter, I am still going through just the same as you. I am totally broken. Today I even broke down while in the care home, I can usually get outside before the tears. Just putting it down on here has set me off again.Oh heck ,must pull my self together my granddaughter is calling round soon. I wish my Love could settle and not be so unhappy but I fear this will never happen. He has clarity of his situation a lot of the time and he is desperate to get away from this "dreadful place" as he calls it. I am sorry to say he is constantly fighting off all staff that try to give personal care. He is still under the care of the mental health team and due a visit on Monday. I hope this assessment will show the need for some help for him.Maybe a change of meds . As for empathy from others , I have tried to avoid certain people as I have just not got the patience to listen to daily comings and goings, my life is consumed with sadness at the moment. Must try harder !
     
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    You’re right in that we don’t have the emotional space to include people who just don’t get it. It’s almost like,well, you’ve placed them in the home, now that’s out of the way and we can all get on with normal things like talking about our new car, holiday, our wonderful Christmas arrangements. I mean they don’t have a clue!

    I worry all the time about my wife and how she is, feeling, whether she’s depressed. I managed to get to the car before I cried and how I got home I don’t know. The Admiral Nurse has assured me I’m doing all the right things, that I mustn’t worry or feel I’m not doing enough. I know there’s no way I could have her here at home I would soon be ill myself with trying to cope with her dementia .

    A change of meds for your loved one is something positive as my wife has been on medication and certainty calmed down quite a bit. I wish you well with your on going crazyness of the dementia world of ours
     
  16. kindred

    kindred Registered User

    Apr 8, 2018
    2,319
    I know, about others. I just smile and nod and wonder at the cruelty of others to folk like me who are newly bereaved. mind you, I got the same kind of thing before Keith died. All sympathy to you. It is a crazy world and I felt all the time, and still do now, that I have got some kind of illness which makes me dizzy and removed from life. No one seems to notice, thank God, so I plough on.
    I know you worry all the time about your beloved wife, Peter. How could you not? This is such torment. I see it so clearly on the faces of the families who visit at the nursing home where I volunteer.
    All sympathy and thoughts to you. You are good man. Geraldine
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    I’m hanging on to the last feelings of affection from my wife I’ve realised but when I go to see her she hardly knows me now. I’m losing the only woman I’ve loved and she drifting away.

    Sometimes I get rational about it and I’m kind of ok but at the moment I’m scared about the near future and even her losing the need to hold my hand when we sit next to each other. All this increases my loneliness and I’m kind of jealous in a way that the home has more contact with her than I do. Does that sound weird?

    Suppose she doesn’t want to know me at all and treats me like a stranger and then latches on to someone else. They’d be no point in me going anymore. I’ve put her in a place where she’s building the remaining part of her life separate from me.

    It’s all too much for one person to cope with and too much without actual physical help from others in the family. I’m isolated here, on my own dealing with the pressure of these specific dementia type problems. Sometimes I even wish I didn’t have to go anymore. Is that bad of me?
     
  18. Lirene

    Lirene Registered User

    Sep 15, 2019
    167
    No it is not bad of you at all. I too go through these feelings every day, and sometimes I have to confess I get sick with fear about what my husband may say or do or accuse me of. Sick with fear of that absolute look of hate I get when I walk in or the turn away of the head when I go to kiss him. But yet, I must go for the one time in perhaps a hundred when I get a slight smile or a small touch of a hug when I go to hug or the slight hint of a kiss. If I didn’t go, I may just miss the time I get one of these things and get a second with the man I will love forevermore xx
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    478
    Male
    Devon
    Thanks to all my understanding friends on the forum. Bless you.

    Bit better now but I will be visiting this afternoon. Another dose of a sinking heart, sadness and helplessness. Sometimes I wonder if I’ve progressed at all with handling my grief. One step forward two back it seems.

    I fully understand that urgent need to have some affection, any affection while we can. When my wife smiles it lifts my day.

    Keep posting and perhaps we can get through this together.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,540
    East of England
    Definitely! You are an inspiration for keeping on in the face of your grief. I read your thread and I am amazed by your resilience to keep going and hope you see your way through to calmer waters without constantly picking at the sore of your ‘lost’ wife. On reflection perhaps you need that at the moment, you suffering too in sympathy with her. But I hope you can find some tranquil moments in some way.
     

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