Dementia’s journey

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

  1. Lirene

    Lirene Registered User

    Sep 15, 2019
    108
    There is actually a volunteer scheme called cinnamon trust which needs help from people for dog walking whilst their owners are in hospital are elderly or have other problems. They are looking for volunteers all over the country.
    www.cinnamontrust.org.uk
    Good luck xx
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Going for my first session of Counselling for Carers this week. I let you know how I get on
     
  3. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    838
    Male
    Newcastle
    #463 northumbrian_k, Nov 4, 2019
    Last edited: Nov 4, 2019
    If you are considering getting a dog at some future point @Dutchman I would recommend adopting a retired racing greyhound. However, it may be too early for you to be taking on additional responsibility.
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    I’m not really in the right place in my mind to consider a big responsibility like a dog. I have to be absolutely sure for both our sakes. A greyhound is however a good choice I understand.

    just when I thought I was getting over my being on my own I had this overwhelming feeling that my wife was walking up our garden path and would wave at me as she used to. Grief plays ugly tricks on the mind and I couldn’t contain my tears. What a way to spend the rest of my life full of longing for things to be different.

    All these suggestions to alleviate my sadness are good and kind but my motivation for the simplistic thing is much reduced. The hardest thing is actually getting up in the morning!
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Just come back from my counselling session which went well. I just want the negativity to move to a more positive place. I’m uneasy about seeing my wife at the home today(as usual it’s upsetting ). Emotionally it’s draining as she seems to not respond to me.

    One my new worries is that I’m losing her contact and as I’m encouraged to now make a life for myself I don’t want her to be my second choice if you understand. She’s the most important person I have but I miss the closeness we once had and, whether I like it or not, I’ve got to live with that new relationship.
     
  6. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    All around the house are her touches, the things we bought together, the decisions on paint colour, her books on her favourite singers and so so much more. I’ve never touched or gone near any of it, I just can’t bring myself to do that as I know she’ll never see them again.

    I don’t mind admitting that I take myself back to bed sometimes in the afternoon as it’s warm, safe and cosy. It’s probably not mentally healthy but I’ve nothing to fill the time otherwise. I sometimes go out in the evening but after visiting my wife at the home I’m emotionally upset and depressed. The medication has made a difference but it doesn’t alter the fact that I’m on my own and after 29 years of companionship, even with the dementia, it’s extremely hard to cope with the difference.

    I pray that over time I will feel better but I can understand why some people just give up.
     
  7. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    872
    Would you consider some volunteering?There are many organisations which rely on volunteers,it could fill a few of the the empty hours
     
  8. marshal

    marshal Registered User

    Sep 6, 2017
    53
    Female
    denton
    I can understand how your homely familiar things make you feel sad. I too look at hubby, s favorite things and my heart sinks. He is having a hard time adjusting in his care home and it is tearing me apart. Today I attended a funding meeting and it all seems so final. I got home a couple of hours ago and just sat in the quiet, I have not even taken my coat off, I just find it all overwhelming and so much out of my control.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    It’s been 11 weeks now since Bridget went to the home and my heart sinks every time I go to see her and when I leave to go home. I feel the same as you that we’re trying to deal with impossible situations and with no solutions.
    In all the time she’s been away I haven’t touched anything of hers, I can’t go into our main bedroom and cannot look at any of our photos. I can’t drive to our favourite locations, in fact my world has shrunk. I wish people like you and me could meet and hug and cry and try to comfort, as best we could, each other. Bless you
     
  10. marshal

    marshal Registered User

    Sep 6, 2017
    53
    Female
    denton
    I have only been up an hour or so.No inclination to do anything. I am desperate to move on from this state of mind. I really do not have any motivation . Like you the thought of visiting our regular places or calling in our usual cafe's has no appeal to me, I just want to avoid them completely. At the meeting yesterday I managed to keep composed and control my emotions for almost all the time. Right at the tail end of the meeting the tears started to well up and I had a dreadful feeling of betrayal because I had been discussing all my loves problems and difficulties covertly and behind his back.That I know does not make sense as he is completely unaware of his situation or surroundings or indeed any of his actions. Our LO's must endure this awful condition with our help, support and comfort. I wish with all my heart that I could do more , BUT I CAN'T. My thoughts are with you.Take care.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    The only thing that has made a difference for me is medication. I’m on x 2 Prozac, x1 Diazapam and need tablets for sleeping.

    I’m not suggesting you do the same but I was desperate and realised I had no choice. I’m also on a 12 week course of Counselling for carers. I get by each day and spend far too much time in bed. Our lives have changed completely and I have realised that anything you do to get you through each day is ok. No one can criticise anything you do because they are not experiencing anything like what we are. Being kind to yourself means you’re in charge of how you do this.
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    All the thoughts of guilt, regrets and abandonment are with me all the time. Give the Admiral Nurse a call at Dementia UK and they really are a help they are experts in all of this and great listeners. They are available most days and most times. They even put mind mind at rest when I thought I’d been somehow responsible for my wife’s vascular dementia. I’m afraid we beat ourselves up too much
     
  13. Philbo

    Philbo Registered User

    Feb 28, 2017
    708
    Male
    Kent
    Stay positive @Dutchman and @marshal

    I am almost 7 weeks into this phase of the "dementia journey", following my wife's move into a nursing home. We are both only 68 (birthdays just before and after Christmas), and she is certainly the youngest in the home, which doesn't help my sense of injustice (how it must feel for those on this forum who are dealing with even younger loved ones, I can't imagine?).

    I guess we all deal with situations such as this in different ways, both in how it affects us and the availability (or not) of suitable support. I too have contacted the National Dementia Helpline in the past, though with this latest development, I have tended to rely on our group of great friends we made at the start of the "journey" in our local pub.

    I do share Dutchman's sentiments that it would be lovely to be able to sit down with others in the same situation. At least through TP, we are able to give each other some virtual support.

    Best wishes
    Phil
     
  14. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    65
    I agree with the above member, you really need to let your go and your family know what you are going through. They would probably be very upset if yiu didn’t tell them.
     
  15. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    65
    You need to tell them how you feel not making excuses for them. Speak honestly about it all.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Newish development is that she’s not eating much food and they can’t force her. I’m just wondering if she’s giving up and if so how can I alter matters.

    I’m going to see her tomorrow and she if I can persuade her to eat something. I’d hate to see her just waste away and I know that dementia can affect the appetite enormously. It’s just one worry after another.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    The home will be monitoring food intake, &will be providing protein drinks etc.
    Dementia progresses, you can’t stop that progression.
    Be the loving companion & make no demands, just sitting beside your wife & if she lets you hold her hand. No conversation is required.

    PWD respond to the calm presence of a loved one, if you are distressed the PWD mirrors that often.
     
  18. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    838
    Male
    Newcastle
    I agree with @DesperateofDevon. After doing all of the caring for so long I found it difficult to step back and let the care home staff take over the practical things. But I realised that, with the professionals taking over the heavy work, I had a different type of caring role for my wife, one that was centred on the relationship between us. After so long as a couple, sitting in companionable silence comes naturally. Sometimes my wife want me to hold her hand, kiss her cheek or give her a hug. Sometimes she does not. I try not to let that affect my smile.

    I have had more glimpses of my wife before dementia - smiles, laughs and affection - in the few months that she has been in her care home than in the previous 3 years. She has settled as well as she ever will given the progressive nature of her disease. I can't predict or change what happens next but I can live in the moment, adjusting to each new phase as it comes along and trying to never lose sight of the person that still lies behind the disease. I don't know if any of this is helpful @Dutchman. You do need to strive for a level of acceptance and peace in your own way. You are there for your wife in her time of need and no-one could ask more. Take some comfort from that.
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    So many thanks for your reply desparateofdevon. We get so finely tuned to any little alteration in our PWD condition. No matter how much I try to divert my attention on to something else of course I’m concerned all the time about her welfare.

    Any thoughts about what your plans are for Christmas. I’m going to the home Christmas Day and Boxing Day but we’ll see how much she can manage. My family are coming to visit as well so it won’t be all down to me..Bless you for your repeated support. I feel I have real good friends on this forum and wouldn’t have got this far without you.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    ah Christmas my husband asked me about that only yesterday.
    My reply- “ I am going from Day to Day at the moment. Christmas is a long way away in my mind & decisions can be made closer to the day”

    honestly, the care homes put on a lot at Christmas & like small children it can get a little over stimulating!

    possible plans-
    Visit mum & cook Christmas dinner.
    visit Dad on Christmas Day on return journey from cooking Mum dinner!

    not possible to have Mum to stay as her needs are so great now!
    Daughter working Christmas Day & Boxing Day at local restaurant so it’s not really happening again for me this year!

    my Christmas revolves around caring & fitting everyone in.

    what is like to do - dog walk on the beach early - smoked salmon bagels & a glass of champagne!
     

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