Dementia’s journey

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

  1. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    I too feel this loneliness and despair, OH has been in respite care for past 4 weeks but looks like it may become permanent. He has had a rapid decline and his previous poor mobility has now gone so I would not be able to manage him at home. My purpose has gone, I hardly do anything at home and now live in semi chaos! I too don't see much point to anything so just drag myself through the rituals of every day hoping it will get better. It's funny how we crave for time and freedom but without our partners it doesn't mean much. I go in every day to see him and take him out in a wheelchair if the weather is ok. The care home seems ok, but I wish it was better, but that's another story and it may be teething problems/shortage of carers or just poor management, i will have to bide my time and keep my eyes open. I don't see anyone other than at the care home, I have no desire to mix or 'enjoy' myself. I know deep down this phase will pass and am hanging on to that thought. Hugs to you all out there in this similar position it is so tough.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    I’m so sorry you feel like this. I think sometimes that I’m the only one going through this and then you post on here showing me the same experiences .

    Like you I find it very difficult to get motivated about anything. Just getting out bed and going to the shops is an extreme effort. At home I touch very little, all the little objects, pictures, souvenirs mean nothing without her here.
    It’s extremely hard to accept that my wife won’t be coming home so what are we we supposed to do. I’m on antidepressants and hoping they’ll work soon but generally I feel awful all the time.

    Like you other people’s company is supposed to help but doesn’t. I cannot go anywhere where my wife and I visited before because it reminds of her absence. Our house is not a home anymore.

    I’m going into the care home in about 30 minutes and look forward to seeing my wife but the way she has become breaks my heart. No speech, a vacant look all the time, a shadow of the women she once was. I can’t imagine my life without her but she has gone and can’t come back

    My tenderest thoughts to you . Dutchman
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Dear Padmag and Dutchman,
    all thoughts and empathy to you. It is beyond hard, I know. Folk used to tell me to go out and do something I wanted to do while Keith was in the nursing home. But what? I didn't feel I wanted to do anything. I have plenty of company if I want it, but in the end I just wanted to be left alone with my thoughts.
    I've had to try very hard to fall in love with my home again now that Keith has died. And he loved this little house so much, it's full of colour and his wildlife photographs. I have teddies all over the place from our son's childhood and that helps a bit. I talk to them.
    I try to find a purpose in being socially useful, and that's what I've been doing all my life anyway. But our beloveds are our purpose. I do understand and am with you every inch of the way.
    Death brings with it a mountain of awful paperwork and I am still grappling with that, but now and then, just for a second, I can sense lightness and sometimes, I can even laugh. So there is a way forward. What is sitting on my shoulder now is a feeling that I am somehow to blame for Keith's death, not trying hard enough … and I feel ashamed.
    My goodness the human heart is complex. Our wonderful loyalty is our best quality. with love, Kindred.xxx
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Went to home today about 16.00 just before tea time and had a chance to do personal care for my wife and get her changed into her nightwear....all on my own!! While doing all this I felt a sense of purpose and all the horrible stress feelings disappeared for a while. It just goes to show that I want to care for my wife but I couldn’t do it 24/7 with no help. I tried and failed for a long time. In the end I had to give up and my wife was on a downward spiral of self neglect and apathy with the dementia

    We had tea together and then I came home. Always feel guilty about leaving but I have no choice.

    Please try not to blame yourself for what happened. We can be beat ourselves up all the time, I know, I do. We do our best at the time, that’s all we can do

    With love , Dutchman
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    How lovely to hear you sounding in a better place
    X
     
  6. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    249
    Central Scotland
    I've been 'confined to barracks' with a ghastly cold for the last 2 days, but have used the time to catch up on many 'caring' tasks. I have made an appointment with my lawyer to change my will, appointing my Daughters as joint executors instead of their Dad because he quite obviously is no longer capable of this task should I die first. Also been labelling some winter weight clothes to take into the care home for him, sorting out some more photos for the album we are building up together when I visit on rainy days and knitting a warm wooly hat for him to wear when we walk in the gardens on dry days. I have also copied another of his CDs of one of the Bands he played in.

    Although he is in a care home, there is still lots for me to do - managing finances, notifying relevant people/agencies of his change of address, etc. getting him to sign Birthday cards for the Grandbairns, taking him small bunches of flowers or fruit from the garden. Although the Home will not accept my home made jam or tablet, for general consumption, there is nothing to stop me taking in a couple of home baked scones with home made jam just for OH.

    When I go in to visit, I check his toiletries and pull up pants so that I can replenish supplies as needed, usually have to track down his hearing aids, take him to the toilet if needed, trim his eyebrows so that he does not resemble Dennis Healy and join in any singongs or activities that are happening (I am now recognised by some of the other residents who are happy to see me). Last visit I replaced the batteries in his breathing cat. He was amazed and grateful that I had restored it to life.

    Please don't think that you are redundant Dutchman, There is loads that you can do to make your wife's life just a little bit better and in the process give yourself a purpose.
     
  7. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    I think as has been said before it's a sort of grieving process and we have to go through it and feel the pain so we can even think of moving forward. Thank you for your kind words. I find if anyone sympathises
     
  8. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    I find if anyone sympathises in person I can just crumple so I also avoid neighbours and tend to skulk out of the back door straight into the car when I go out. I do have some experience in that previous to my OH I had a partner who died unexpectedly and suddenly, instantly. It was a horrendous shock but because I had to support myself and 2 children I had to keep going and working to provide. Unfortunately for me I dampened it down so much that a year later it caught up and floored me and I had to start the grieving process, I'm afraid there is no short cut, that is why in our situation I think the process is now. Try to think that nothing stays the same for ever, life changes with time, and hopefully a contentment will somehow happen with time. Dutchman your brain will learn to accept eventually, just hang on in there day by day. Sorry rambling putting my thoughts down, hope it helps.
     
  9. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    Thanks Kindred so glad you are feeling some lightness. You really are a star volunteering in the care home you sound like a lively character that the residents take to and look forward to seeing you. I find that I 'chat' to quite a few residents but am not outgoing enough to entertain them. I think they could do with more one to one not necessarily entertaining but some attention. I find the carers are very busy doing the practical stuff and there is a void where there could be more interaction. I think you make someone's day far nicer for just being there.
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    I’m going round in circles here. I’ve just been the doctors for some more sleeping pills and advice about Prozac. It takes about 4 to 6 weeks she say for the Prozac to make you feel better.
    I get home and something set me off and I’m sobbing because I want my wife back. It’s been 5 weeks now in the home and she’s the youngest there. She calm and compliant, has a shower, gets changed for bed and sleeps for 12 hours. She’s on Respirdon which is changing her compliance I’m sure.

    I want her home desperately. I could do the jobs of the home I’m sure with some carers coming in. The Admiral nurse says I could do what some do and try it out occasionally but what if I get her here and she doesn’t want to go back to the home. The admiral nurse says I ought to wait till the Prozac starts to work and i feel better.

    I don’t know what to do for the best. I just know I’m going crazy here without her.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,735
    Kent
    I think this is good advice.

    Are you prepared to risk bringing your wife home, find she reverts to how she was before residential care and have to start all over again?

    So many of us would have liked to have tried this but I for one was frightened to take the chance. If it failed it would have been devastating to both my husband and myself.
     
  12. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    509
    Female
    High Peak
    Hello @Dutchman , I can't help noticing what a good experience it was for you to do some personal care for your wife again.

    Could you perhaps talk to the care home staff and arrange with them to do something similar each time you visit? It seems to make you feel more connected and reassures you that she is still under your care too, even if the care home do some of the difficult stuff.

    Just a thought. It might make your visits feel more worthwhile and meaningful.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    I’ve just come back from an organised walk arranged my my neighbour. About 10 of us. Trouble is that because I’m really struggling with emotions of my wife in a care home and my loneliness, I can’t really engage fully with other people stories. They all seem to have partners somewhere else and no one really knows what to say when I tell them about me.

    There’s also a part of me feels that I shouldn’t be doing any of this because I’m not doing it with my wife. Almost like a betrayal. I feel all the time that I’m just not coping with any of it at all. Like there’s no alternative to feeling miserable.
    I’m going to the home later and I’m always apprehensive about what I’ll find with my wife. I always, always feel sorry for her.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    I Spoke with an Admiral Nurse today. She said that in her experience this time now, the early stages of separation, me here my wife in a care home, is the most difficult and the most cruel.

    I’m sitting here thinking that my wife is suffering but the nurse explained that that’s what you experience from your perspective. From my wife’s experience she feels safe and cared for. With all my heart I hope what the nurse has explained is right.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Please believe these lovely professionals with years of experience.
    Can you honestly say that you are physically & mentally able to provide care 24/7 7 days a week 365 days a year ?
    Are you able to provide the identical care & support provided by the care home? Carers will briefly come in & out but it will be you who is left with the confusion of these people going, you who won’t ever properly sleep again for fear that in your exhaustion you might miss your wife putting herself at risk.

    Can you do the jobs of lets say 6 people (minimum) a day, my friend you like so many have to come to terms that no one person can in certain circumstances can do the impossible.
    Putting your wife’s best interests first is heartbreaking for you, I can see your pain in your words on a daily basis.

    Living your life to the best of your abilities & honouring the values you & your wife hold dear is not betraying her; this is the ultimate action of honouring the person before dementia took control.

    It’s normal to feel this overwhelming grief, but your wife will instinctively pick up on your emotions. You love your wife & family you’ve had together, now you need to focus on not letting dementia take this & your years together away from you.

    Dementia takes so much, please don’t let it take more...

    Be the best version of yourself that you can be.
    Honour the love for your wife
    You will find precious memories ahead, but only with acceptance that you did your best; & you did that & above. Sometimes what’s in our loved ones best interests isn’t in ours, & sadly that fact can’t be changed.
     
  16. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    I agree with the Admiral Nurse we can only view our OH from our perspective. In reality their brains are much reduced and they are very limited in their capacity. My OH is happy and doesn't acknowledge when I arrive or leave. His world is very small and he is easily distracted by everyday goings on in the care home. Try to accept that the brain has changed along with their outlook, I know it's easy to say but I know the pain, just try to accept that they are contented in their world.I know the loneliness is painful but it is necessary to feel this I think so we can move forward albeit very slowly. One day at a time.
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Today I went to a meal given by a Memory Cafe organiser for a number of carers at her house. Lovely meal, lovely people but, my mind is elsewhere and I cannot relate to their conversations so I feel I’m letting them down a bit. Perhaps it’s a bit early for me for this level of socialisation.

    Other carers at this meal have really made big efforts to care for their OH at home with equipment, multiple carers coming in, restructuring their houses. I’ve done nothing like that and I wonder if I could’ve done more to keep her here with me. Then I think, after I’ve done some personal care and changed her at the home, I couldn’t do this 24/7.

    I really am trying and I know I can’t hide away for ever but I find social situations stressful as all I can think about is my wife and my future life.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Today I went to a meal given by a Memory Cafe organiser for a number of carers at her house. Lovely meal, lovely people but, my mind is elsewhere and I cannot relate to their conversations so I feel I’m letting them down a bit. Perhaps it’s a bit early for me for this level of socialisation.

    Other carers at this meal have really made big efforts to care for their OH at home with equipment, multiple carers coming in, restructuring their houses. I’ve done nothing like that and I wonder if I could’ve done more to keep her here with me. Then I think, after I’ve done some personal care and changed her at the home, I couldn’t do this 24/7.

    I really am trying and I know I can’t hide away for ever but I find social situations stressful as all I can think about is my wife and my future life.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Carers during the day, equipment etc would not have been able to keep her safe because the biggest problems were that she didnt recognise either you or her home and there is no equipment that can help that.
    You know this is the case @Dutchman - cut yourself some slack
     
  20. padmag

    padmag Registered User

    May 8, 2012
    258
    nottingham
    I agree with Canary. Dutchman, you really sound like you're on a rollercoaster of distress. I try to find something everyday however small that makes me smile even in this situation - it doesn't last long I know but gives me hope that life won't be this grim for ever, in fact nothing stays the same forever. Yesterday Richard managed a small walk to the music room in the CH and he started swaying to the music which was lovely to see. I still feel sad and come home alone, but it's good to break the cycle, and give your own brain a rest. Sorry if it sounds patronising just trying to help.
     

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