1. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    @Dutchman - I dont think getting someone else to give you a hand (either family or professional) is abandoning your wife. Even if she had to move into a care home, the marriage vows do not stipulate that you have to live in the same building. Getting the best care for her is very much fulfilling your vow to look after her.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Hi canary and all.

    I’ve been thinking. My daughter keeps on at me about getting someone in to take over so that I can have some time to myself. A paid sitter. Quite right you may say as I deserve this. And from the outsiders point of view, being apart from the day to day living with it, it seems sensible. So why am I reluctant? I just feel the organisation of a sitter, the anxiety my wife would feel meeting a stranger and the not knowing while I’m out whether its going okay, just seems pointless. I suppose also I feel an overriding responsibility to her to be there.

    I’m told I should want my own happiness as well but that has somewhat dribbled away over the years so the best I can look forward to is peace and quiet sometimes. When the dementia just fills every part of your world it’s difficult to think straight. Thanks Canary for your insightful comments.
     
  3. Starbright

    Starbright Registered User

    Apr 8, 2018
    388
    Female
    I find it’s all about letting go @Dutchman isnt it ...we are so clued up to the whys and wherefores of caring for and in my case my husband that we think no one else will know how to take care of them....So we worry and then just carry on without help... its really hard but we are our own worst enemy or is that this vile illness.
    ((( have a hug))) A x
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    I find also, that when one is immersed in this disease - any action that might change things is really hard to make oneself undertake - we are so battered emotionally that decisions are hard and we stick to the status quo - I try not to but it is really hard.........
     
  5. Lladro

    Lladro Registered User

    May 1, 2019
    27
    I have always said that I don't hate, but I do hate the dementia that has altered our lives so dramatically. Hating the condition not the person is of course the right way to look at it, but even though I love my wife more than I have ever loved any person, I find myself not liking her very much - too often. I feel guilt for this feeling and I can't seem to get over these feelings. I have always quite liked myself (not in an arrogant way), but now I question how "good" a person I really am. Does this ever get any better????
     
  6. Justmary

    Justmary Registered User

    Jul 12, 2018
    32
    Female
    West Midlands
     
  7. Justmary

    Justmary Registered User

    Jul 12, 2018
    32
    Female
    West Midlands
    I agree. The dementia fills your head and doesn't let you think straight. I've had to adapt and make so many changes for so long that I just want things to stay put for a while. I also feel emotionally battered and drained.
     
  8. pevensey

    pevensey Registered User

    Feb 14, 2012
    80
    Gosh my OH is the same, he used to love watching his sports but seems to just like quiz shows and emmerdale, anyhow g else he will go to sleep. As soon as he sits down in armchair hes asleep in couple seconds. I think it's because he cant follow a storyline, he even goes to sleep watching emmerdale and that's his favourite
     
  9. pevensey

    pevensey Registered User

    Feb 14, 2012
    80
    But whatever he watches he always says This is a repeat, even if it's a live program
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Hi Rosebush . Below is a useful link that might be helpful for carer stress. Best wishes.
    https://dailycaring.com/4-ways-to-r...il&utm_term=0_57c250b62e-631c552eea-123250853
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    I so understand, Dutchman. There comes a point when any extra organisation is just too damn much. I've completely forgotten how to want my own happiness. What does wanting something even feel like? Could your daughter help with the organisation? When I first got paid care for Keith, I stayed with them for the first session, made it a kind of social and called her Keith's friend. That seemed to work and I was absolutely exhausted afterwards. So understaqnd what you are saying. Warmest, Geraldine
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    190
    Some say it’s good to keep a journal but mine is here. Like you I love my wife and I’m feeling that she’s the only one I’ve ever really loved. I’ve been married before and I feel we married because it was exciting and then we stayed for the children ...classic. I remarried and now I’m realising that all the normal times pre dementia I took her love for granted and oh I wish I could have loved her more back, made more of the time we had as a normal couple.

    She doesn’t know me as her husband now and the closeness and it’s love has gone. Like you I love her but hate her when she creates havoc in my life with her bizarre behaviour.

    Has anyone been able to find out what’s it like inside a dementia mind, been able to describe it so we can imagine it for ourselves. When my wife’s asleep I hope it’s a time of calm compared to the awful anxiety and stress when she’s awake.
     
  14. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    We keep a scrabble notebook of our games and who wins......

    At the end of the year 5 years ago....... OH 246 games to my 124
    3 OH 200 games to my 160

    so far this year OH 90 games to my 138

    This alone tells me the story. And yes, what is it like for them? He keeps saying he taught me too well, I know I have not improved.......

    Like you @Dutchman - I look at him and want just a touch, a smile, something that tells me our love is still there ( I have never been able to work out why he did not ask me to marry him - we are both free to marry - but it could be the dementia, and now its too late..)
     
  15. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    206
    Central Scotland
    But that is the problem - whatever you do or don't do things WILL change and as we know they will change for the worse, not better. When things are relatively stable we don't want to rock the boat by introducing new routines or new people but we know that it is much better to do this in an orderly fashion, than to have it thrust upon us at a time of crisis, when neither We nor the PWD is in a fit state to cope or make decisions.

    We are waiting for a place in a close by Care Home for OH and just knowing that this decision has been made calmly and Will happen (fingers crossed) in the next month or so, has enabled me to cope with the day to day traumas, because an end to the 24/7 responsibility is in sight.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    190

    Today I arranged for a neighbour to sit with her for an hour while had to go out . As soon as I’m out of sight she wants to wander looking for me even though I’m not her nearest and dearest anymore but important enough to want to be around. I get back and she now want to go off in the car looking for her husband again. No I say ( it’s me) so she sulks. She now in bed. I’ve tried to get her to brush her teeth with an electric toothbrush and she doesn’t push the button. Can’t she says. It’s impossible she says. I demonstrate and she gets angry and shouts. I get angry back and shout. If I could and if it was possible I’d divorce her tomorrow and hang the consequences.

    Had a visit yesterday from a women from the Mental Health team as an intro to a regular visit. Nice enough but full of moans about her work load, people leaving, not enough staff. I mean, I’m not bothered, just support me!

    I believe I’ve come to realise today that this burden is too much for me and I’ve seriously underestimated my capacity to carry it. No one I know would do any better and there are some who wouldn’t even pick it up. I feel sometimes that I’m now living with a complete stranger and come to realise that whatever response I have to her actions should be without any guilt or remorse as I’m only doing the best I can in extreme and challenging circumstances. They ( authorities) should give us medals and a kiss on both cheeks.
     
  17. PalSal

    PalSal Registered User

    @Dutchman You are so right!!! It is a difficult job and you are just doing the best you can. Bless you. What a pain for you that you must listen to the person who is suppose to be helping you complain about her workload....terrible. You should not have to supply her with support. Really sorry to hear about that...actually I find that like of thing so frustrating. I find it here too from people who are being paid to assist and they either don't know how , do not have the budget or just direct me to a website...thanks a lot ....for nothing! But luckily there are a few very helpful people who make up for the rest.
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,189
    East of England
    This sounds like I was a few weeks ago. It sounds as if you need some respite, which may be difficult for you to have but we are all stronger than we think and you are a devoted person for what you are doing in the face of intolerable circumstances. I did manage to have a couple of weeks respite and I am able to carry on, while realising that the burden won’t go away. Is there any chance of a respite break, before you do break yourself?
     
  19. wmb

    wmb Registered User

    Sep 2, 2015
    1
    That’s my escape too my craft room , but a few months ago my first love childhood sweetheart contacted me his wife too has dementia, is it wrong that he visits me once a week for a few hours while his wife and my husband are in day Care , we just sit talk and watch tv at present
     
  20. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,254
    Female
    South of the Border
    Tricky one ! You will know for yourself, but perhaps because you are asking the question, you already know - and it's not for me to judge.
    But maybe we have to grab some contentment - I am not even going so far as to say happiness......
    good luck, anyway..
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.