Married 40 years, but I don’t feel like celebrating

Discussion in 'I have a partner with dementia' started by Sad Staffs, Jul 21, 2018.

  1. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Today is particularly hard, it’s our ruby wedding anniversary. We are lucky, we can still go out to lunch and do this sort of thing. But the hard bit is knowing that things are so different now, and it seems that only I can see how very different he is. Family and friends just say how well he looks and he holds a conversation with them and they look at me as if it is me that has got dementia and that I’m making it up. It makes me question myself, but I know that he isn’t the same person he was just a few short months ago.

    Will it ever get easier? I know it won’t, and I am so frightened as to what the future might hold. We have no real family or friends to help, or to give me a break. And in any case, they all think he is fine, so why do I need a break.

    Because today is a special day, married 40 years is something we should be proud of, we did go out for a lovely lunch together. I made an effort to get us both dressed and ready. I was desperate for him to tell me I looked nice. But that just doesn’t happen like it used to. It’s like he doesn’t really see me anymore, all I’m there for is to look after him and make sure everything runs smoothly as and when he demands it. It’s sometimes like I don’t exist.

    Thank you for reading this... just writing it down helps me, but I don’t think I will ever accept where we are and how we are. How can I? I don’t want to be where I am. I want to be where we were 40, 30, 10 years ago. But, I have some wonderful memories. Trouble is, my memories make me cry because I want to be back with them.... and that will never happen.
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh I so identify with this. Our ruby wedding will be in 2 years time, but it is the same. Already I just dont exist in his mind anymore. Im there as a housekeeper, lodger, cook, nurse and taxi driver. The only time he talks to me is when he wants something, but - yes - to others he appears as if there is very little wrong and is his old charming self. Its lonely, isnt it?
  3. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    It helps knowing I’m not alone.. thank you x
  4. marionq

    marionq Registered User

    Apr 24, 2013
    Forget birthdays, anniversaries and Christmas Day. They dont exist as important days anymore and if you care about them you will just be hurt. Most PWD operate on a very narrow level of routine and simplicity. To ask them to notice you or what the occasion is can only invite pain.

    I am having one of those days when I ask myself if my input really matters and to be honest any decent carer could do the same and as long as they provided warmth and comfort I don’t matter. I am trying to plan a different approach where I can release myself from emotional involvement. Haven’t quite got it worked out but I’m working on it.

    As a PS. When it was our Golden Wedfing Anniversary I just ignored it as he wouldn’t have understood it or cared. We have been married 53 years.

    BLONDY Registered User

    Oct 29, 2011
    2000 MILES AWAY
    My heart aches for you, yes everyone sees a different person as they are not as close to him as you are, it took me a long time to get my brother to realise that something was wrong with mum. Many people stick their head in the sand and do not want to see the truth, they do not want to be accountable. That however does not help anyone. Enjoy your special day put on your best dress, order your favourite food. Dementia comes and goes some moments they are here with you in the present not locked into their own muddied world. Have your special Day and enjoy it, you both need to celebrate 40 years, congratulations
    Kind Regards
  6. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    That’s something to celebrate...40 years, and I’m sorry it’s such a painful day for you. It’s hard, when you see other people enjoying what you no longer have. As my friend used to have to look for the currants in the bun. I have had an awful week, culminating in me packing my husband’s last bits of prescious furniture yesterday and thinking he would never sit at his own table again. And then I thought, but we could have been packing this, because he had died. There’s always a currant in the bun, sometimes you just have to look very hard for it.
  7. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    Hi Sad Staffs,
    I'm so sorry you're feeling sad on such a special day but I'm glad you were at least able to have lunch together.
    You're welcome here where others know exactly how you're feeling. (My PWD is my aunt, not my husband.)
    It's not fair - it really isn't, because life isn't fair - and you're allowed to be angry and/or sad about that.
    There's not much to be done about people who don't understand - they'll either fade away or stick around and eventually understand as things get worse.
    I wish you some better days and peaceful moments.
  8. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Thank you.. luckily I like currants, so I will take your good advice and look for the currant when it all feels a bit too tough
    I’m sorry you have had such an awful week... I’m not at that stage with my OH yet, but knowing that other people go through such sad times and cope will help me. Thinking of you x
  9. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Thank you, I just wish that it didn’t hurt so much, everything hurts. I just wish I could develop a thick skin. It all seems to have happened so fast... and where does it end? And, I don’t want it to end, I just want what I can never have again.
  10. kindred

    kindred Registered User

    Apr 8, 2018
    I know sweetheart, I know. Me too and we have been together 53 years as we met as students at Uni. BUt you have been and are beloved by your husband and that will never go. the awful pain will get less, I promise you. KIndred.
  11. Bee.quilt

    Bee.quilt Registered User

    Dec 29, 2017
    On Wednesday we will have been married for 59 years. OH hadn’t acknowledged birthdays, Christmas, or any family event for many years before his diagnosis. I have resorted to giving myself as exciting day as I can. This year I shall taxi into town for some retail therapy, (even though I’ll be taking most of it back next week) I’ve sent a massive order for paperbacks to amazon and will get him to pay the bill when it comes. What else can I do? I shall FaceTime my grandchildren, have salmon and little potatoes for tea, and drink most of a bottle of prosecco. There. That will do it for me. Of course the snag is, things are bound to go wrong—grumpy OH, house painter turning up a day early...dream on. Sorry but you need to get a bit selfish Sad Staffs, it’s a hard road we’re on. Carpe diem, petal.
  12. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    I met my OH when I was 15 in 1965 and married in 1970(48years ago) I can't remember the last time we celebrated anything, on fathers day the children and grandchildren came round with cards and gifts but he hadn't a clue who they were, he doesn't think he's married or has any children, God knows who he thinks I am, so we just carry on and hope for the best. Memory clinic on Tuesday (dreading it) Lxx
  13. G&D

    G&D Registered User

    Jul 18, 2018
    #13 G&D, Jul 21, 2018
    Last edited: Jul 22, 2018
    I’m reading all of these comments and feeling sorry for you all but, at the same time, feeling jealous that you had so many good times and happy memories. .
    Ray and I got together in July 1986, in November 1988 he had a severe brain haemorrhage (he was just 38, I was 35) and I’ve been caring for him ever since. His speech is bad, his right arm is paralysed and the leg is bad too. We don’t see anyone, well I do but he won’t go anywhere.
    This diagnosis has knocked me for 6 as I know he’s just going to get worse now but(& this sounds awful) it could be are years.
    I’m now 65 but I’m realising that the whole of the rest of my ‘active’ life could be spent in this situation and that scares me!
    We do now have carers and nurses but I would love the opportunity to spend some time on m6 own in my house,
  14. marionq

    marionq Registered User

    Apr 24, 2013
    G&D I am going to assume you live in the UK. Without a few hours to myself my husband would now be in a care home or I would be a physical and mental wreck. Two or three years into diagnosis I was on the verge of a breakdown and he was at peak wandering day and night. I was offered a place in a care home for him.

    He started on Trazodone which calmed him down and this meant he would stay in a daycentre without trying to escape. He started with one day and one escape and then another day and then eventually four days a week. The medication and the daycare have been good for us both. On the remaining three days it is still a strain but I get through it knowing I have four days when I get a break. In fact a friend said to me yesterday she didn't know how I remained so "sparky"!

    You must have time to yourself. Look at the possibility of respite or daycare. Dont ask him just go ahead and find out what is available and make the arrangements. You need to be proactive to save yourself.

    We are now six years after diagnosis and this could go on for another ten.
  15. PalSal

    PalSal Registered User

    Hi there...Am...yes that sounds sad glad you found a currant.
  16. PalSal

    PalSal Registered User

    Got that, I often just sit and have coffee when the carer comes to walk my OH. I miss being alone in my own house. Just to be still.
  17. PalSal

    PalSal Registered User

  18. Manc70

    Manc70 Registered User

    May 30, 2018
    S. Yorkshire
    First of all Sad Staffs congratulations on your Ruby Anniversary and all the lovely memories you must have made in those precious years. I identify with so much of what you have said and recognise your pain. That yearning to be back at those times when life was good and you desperately want to be at least acknowledged by him or be told you look nice, feel he is proud of you for something you have done. Like you I also have that he can be with other people and seem fairly like his old self which takes so much out of him that minutes into us being back on our own he either has to go to lie down and sleep or sits in a silent mood. Forgive me for going on a bit, we have been married 46 years and like us all I am finding it very very hard.

    The sad fact is there is no other way for our own sanity than to come to terms with the way it is - I know I’m not alone when I say there are times when I am truly desperate and feel I won’t be able to cope. Then I feel strong and determined to make the best of it before feeling totally helpless again. I see so much strength and wisdom from the people who post on TP and can only hope for some of it, I know I get a lot from coming on here either just to read some of the threads or get some of this written down and out of my head even though it sometimes turns into a ramble.

    My heart does go out to you and I am sending you my best wishes, I’m sure you will have the strength to find a way through this. It is painful but I think of our wonderful memories and have my cry, I sometimes feel I will never stop, but I do and it is a release for a little while. Take care
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Oh, this is so sad. I know writing it down helps, but it also makes things worse - for me - anyway, as the starkness of what has happened is there in print.....

    I know exactly how you feel, I think we all do. Nothing will change it, it is what it is - be brave.
  20. Rosie4u

    Rosie4u Registered User

    Jun 22, 2017
    South Manchester
    We celebrated our 30th anniversary last year by going to our favourite hotel where we always go. That day was the first day he didnt recognise me and got upset at being in a hotel with a woman.

    This birthday he was oblivious to the cards and visits I had on my birthday which was probably more hurtful and wasn't a bit bothered about it.
    Although its hard- this year I shall not celebrate my anniversary but for my birthday next year will do something nice for myself. Its not what I want but its the currant in the bun.

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