Dementia’s journey

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

  1. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    Im glad that shee is improving now that the infection has gone. It will take her a while to settle and for you to adjust. Im glad you had a pleasant time being with her. I hope that you can get back to being the two of you in the care home
    .
    This is classic ambiguous/anticipatory grief.
    I was wondering about a grief counsellor too. Sometimes it takes a while to find the right person to talk to.
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,094
    Male
    Bristol
    Sorry you are feeling so hopeless, Dutchman. I have been for counselling a couple of times, and first time round I did actually feel worse after the first few sessions, but felt it helped me over about 12 or 14 sessions. Over the summer I have had CBT which teaches a new way of looking at things, followed by another 6 sessions of telephone counselling. That seems to have finally started to help my depression and caring role.
    Sorry that is just a long version of asking you to be patient with yourself and your counsellor, but you are going through hard times and I hope patience and long term support will get you through it.
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    434
    Male
    Devon
    Hi everyone. It’s 8.00 and I’m lying in bed wondering what time I should go to the home to see my wife. Just over two weeks now she’s been there and they are confident she will settle in. Maybe or maybe not, who knows. There’s no alternative.

    I miss her presence here at home but I comforted myself by looking at previous posts of mine that showed a wife who was here in body only and I was upset when I felt so alone because of her dementia behaviour. It’s strange isn’t it that no matter how hard it gets we cling on to the person.

    Over the last two years or so I had so many upsets when I wanted so much for it to stop, for her to be reasonable and have a half normal life. But of course it never happened and instead I argued, got angry, slammed doors, swore ( a lot) , threatened, pleaded, lost my patience, tried to be nice and the list goes on. But dementia destroyed it all. No washing, no relationship, no company, no empathy for my feelings at all.

    I would ask while I’m here what do you say to your OH when they say to you ‘’ where do you go/ where do you live’ when I leave the home. I don’t want to say I go home. Any suggestions?
     
  4. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,338
    When I leave I usually tell Mum I'm just popping to the shops to get something nice, without referring to going home. It seems to work.
     
  5. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    255
    Central Scotland
    Because our House is in the same street as the Care Home, I usually say that I am off 'down the road' to do the washing, cut the grass, water the poly tunnel, etc. and that I will be back soon. I am careful to refer to it as 'our house' rather than 'our home'.

    I am trying to muster up the courage today to take OH out of the Care Home for a run in the car. I have been strongly advised by Care Home Staff NOT to take him to or past our house, so will drive off in the other direction.
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,512
    Such a lovely thoughtful idea.
    I remember someone saying once that when the left a child they always gave a scarf or something for the child to look after. Leaving a coat must have a similar effect.
     
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,539
    Ireland
    I shouldn't say it, but I'm going to! Well done, Mrs. Northumbrian K!
     
  8. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,539
    Ireland
    Dutchman, I'm so sorry for what you are going through. It's one of the toughest things.

    When my husband was in the nursing home, I made a point of never wearing a coat or carrying a bag when I went in. I left them in the car. That way, when it came to leaving, there was no visual clues that I was, actually, leaving. I would tell him simply that I had a couple of things to do, and say "I'll see you later." Time had no meaning for him anymore. At one stage, after I had major surgery, I didn't get to go in to visit for four or five days. I sent relatives in, to collect laundry and check on him. He never asked about me, or missed me at all. And when I did go back in, he greeted me exactly the same as he always did.
    He also came to believe that when I wasn't with him, I was busy around the nursing home. He thought I lived there too, because it had become "home". It's really hard, and I'm sure all of us have been tempted, once the daily stress and sheer exhausting work of caring at home is no longer there, to look back with slightly rose tinted glasses, and think that, really, things can't have been as bad as we think. That's why it's really useful to be able to look back over our posts and see our own words telling how horrific it was. In fact, after my husband settled in to the nursing home, we had a restored quality of relationship that hadn't been possible for years. We were able to just relax together, while someone else took on the actual work of care. This benefitted both of us, because all of his aggression was centred, generally, around personal care. I no longer needed to deal with that, so he became more relaxed around me.
    I wish you well. And I hope that you will allow yourself to get plenty of rest, and some restorative time doing other things between your visits to your wife's care home.
     
  9. SoAlone

    SoAlone Registered User

    May 19, 2016
    137
    Female
    Devon
    Lady A, my experience mirrors your words exactly. my OH has been in the Nursing home just over a year, and I must admit because he is so much calmer and our relationship restored to a large degree, I think why did I accept this position for him, and make plans just in my mind to give up work and have him home to care for him. Then he has a difficult episode for a few days and I go in to the same agitated, angry and confused person that left our home and it does remind me why he is there. If the staff were not available this would all be directed at me as before. The staff are wonderful people but can 'tag team' depending on who is in the firing line, calming him quicker. When it is just you, as we all know that isn't an option. Did me good to read your post, and restore reality. I took much of the early days for much needed rest, then followed a difficult time coming to terms with what is, and now I am beginning to rebuild a little. Love to all
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,842
    I time my visits so a meal or refreshment brake will naturally punctuate the end of the visit. When Dad offers to share his tea, I say I had a snack before I came.
    Shopping is another option a bit of food retail therapy can actually help unwind me after a visit; & it’s nice to take in a food item/ sweets/ plant / magazine for Dad the next visit.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,842
    I think this is grief you are experiencing, dementia is a bereavement of all that made our loved ones them. Glimpses can be seen sometimes but the physical being is a shell of the person we knew & still love.
    This whole process is outside of our life experience, no one unless they have experienced this cruel disease can truly empathise with you; & then each persons experience is unique.
    Your home is a tangible proof of your relationship & love. At this raw moment in time the recent memories are not the happiest of your married life. This will ease in time I promise, your wife would want you to enjoy the things you worked together to achieve & find comfort in knowing that the home you created together is as loved now as it was in its creation.
     
  12. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    277
    How about saying youre going shopping?
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    Hello @Dutchman.

    Before my husband went into residential care and was at home with me, many a time if I went to the toilet or into the kitchen, he would think I`d been out, away from the house.

    With this in mind I had no worries leaving him after a visit in his care home.

    Like LadyA I never took my outdoor clothes into the sitting roon=m when I visited so he wasn`t upset when I left.

    I told him I had shopping to do or washing to bring in or any of the usual things I did when he was at home with me.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    434
    Male
    Devon
    I’ve had a terrible day today. We went out this morning to a local cafe with a home staff member but my wife eats nothing. Go back to the home ok.
    I then have to go out to sort out stuff and said I’d be back tea time which I do . My wife is now begging me to take her home, the staff are getting frustrated because she won’t eat anything, I can’t leave she’s holding my hand tight and to cap it all one of the residents who is overhearing me talking to my wife calls me a dirty *******. I know this women has probably dementia but there’s only so much I can take so I report this to the home manager and leave very upset.

    I cannot cope with this and I don’t see any alternatives that will keep me from a complete nervous breakdown apart from my wife dying and that’s an end to it. Sure I’d miss her but she’s gone already plus the stress of the other residents in the home. I wouldn’t like to be living there so why would expect my wife to be happy to be there.
     
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    434
    Male
    Devon
    ve had a terrible day today. We went out this morning to a local cafe with a home staff member but my wife eats nothing. Go back to the home ok.
    I then have to go out to sort out stuff and said I’d be back tea time which I do . My wife is now begging me to take her home, the staff are getting frustrated because she won’t eat anything, I can’t leave she’s holding my hand tight and to cap it all one of the residents who is overhearing me talking to my wife calls me a dirty *******. I know this women has probably dementia but there’s only so much I can take so I report this to the home manager and leave very upset.

    I cannot cope with this and I don’t see any alternatives that will keep me from a complete nervous breakdown apart from my wife dying and that’s an end to it. Sure I’d miss her but she’s gone already plus the stress of the other residents in the home. I wouldn’t like to be living there so why would expect my wife to be happy to be there.
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,094
    Male
    Bristol
    Sorry you had such a horrible day, Dutchman. I don't really know what to say, but could not read and run, so sending you strength and support in hard times.
     
  17. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,307
    Nottinghamshire
    I'm sorry you had such a bad visit today Dutchman. I sincerely hope that your next one is better.

    I had an upsetting incident in my dad's carehome where one of the residents made her opinion of my dad known very forcibly. It only happened once though as the staff tended to keep her away after that. Hopefully the staff at your wife's home will do the same for you.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    Its bound to be a bit up and down at the moment - its early days
    I used to avoid visiting mum at tea time because many of the residents (mum included) were sundowning and could get a bit antsy. Mum never seemed to notice, though. I seem to remember you posting when she was still at home that when it got to the evening she was begging/demanding you to let her go home.
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    Yes It sounds like sundowning to me @Dutchman. What an awful experience for you. It`s bad enough at home but when others become involved it makes it even more upsetting.

    I always visited in the morning before lunch or in the afternoon after lunch. It was easy for me to leave at lunchtime or just before teatime.

    I know this is no comfort to you. We have all learnt by experience and sometimes we can't benefit from the experiences of others but go thought them ourselves.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,842
    It’s traumatic when having a positive experience is then marred by an unpleasant one. You say you visit twice a day, can I ask you why? You need to let your wife get into a routine & the carers help her to do this. Visiting twice a day could possibly be distressing her rather than being a positive experience, & it’s tearing you apart. Afternoon visits are fraught with sundowning, it’s not a positive experience for anyone.
    You wrote previously about wanting the torture to end, & everyone has those emotions; but surely this is a time for you to recharge your batteries as well.
    At the moment your emotions are raw & life has been about caring for your wife. People with dementia often mirror other people’s, could it be possible that your distress is being picked up by your wife?
    Also I don’t know if it’s a sensory overload visiting twice a day, not only for your wife but for you.
    I know this is not what you want to hear but you need to let the care home care for your wife. Meanwhile you need to take that opportunity to rest, grieve & look back at the desperation you felt & how far you have come.

    I have seen when visiting Dad at the care home residents saying exactly the same thing to their relatives. Watching those relatives become wracked with guilt & doubt the decisions that led them to placing a loved one in the care home.
    Once the distraught relative leaves, the person with dementia settles. The carers have years of experience at Dads home in dealing with a wide variety of situations & deal with it daily. Meanwhile I’ve found the distraught relative in tears in the car park.

    You unconditionally love your wife, so you need to set a routine for her & yourself that gives her a chance to settle into a routine at the care home.

    Think about making an appointment to see your GP & talk through all that you feel. You sound so desperately distressed & emotionally drained (that I can appreciate having had 2 breakdowns myself) - the act of talking face to face with a medical professional will help focus these thoughts & emotions.

    Please be kind to yourself
     

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