the tears started and won't stop

Discussion in 'I have a partner with dementia' started by tuffydawn, Nov 1, 2018.

  1. PalSal

    PalSal Registered User

    Some days life can be very lonely, and that evil green monster jealousy steps up. I want to be happy for my friends whose lives allow them to enjoy each other to old age. That is not my story. I must make the most of the life I have been given, by not giving up. I want to continue to engage in life and the pleasures I most enjoy, music, the visual arts, family and good food. (I have really given up travel...for the most part)
    I am so grateful you have all been writing about missing your OH's, when they are not with you. I am trying to nourish that thought. As I often think my life would be better without him, but thanks to these posts I see how much I would miss him in spite of all the daily life problems he presents. He is still here with me and I am glad to see him in the morning and when I get in bed at night.
    Yesterday, he flooded the bathroom, luckily he was showering it was my fault....I wasnt helping...he seemed to think he could do it...(some days he can) Life on lifes terms.
    Always glad to read TP
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,889
    Female
    Scotland
    @Justmary it is surprising how insensitive people can be. I have a lovely sister who lost her husband to vascular dementia and you would think that would make her understand my situation with my husband's Alzheimers? Not a bit of it. She is very gregarious for an 85 year old with a bad heart and has a social life a young person would envy. On many occasions when she phones she is so busy telling me all that she does she forgets to ask how I am or my husband is.

    We really have to develop a thick skin don't we?
     
  3. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    I think Christmas is a particularly difficult time for many of us.
    We have been a very insular couple so haven’t really needed anyone else. We have family and friends that we care a lot about of course, but we have only really wanted each other. Now it has come back to bite us! Well, me really, as I now feel I can’t ask anyone to sit with my husband while I have a couple of hours break.
    So, Christmas isn’t happening this year.
    For the first time there will be no tree and no fairy lights and garlands. I might cook a turkey crown, but it will be frozen veg!
    You see..... this will be the first Christmas I will cook dinner. My husband has always cooked Christmas dinner for the two of us.
    I’ve always helped, but usually with a glass of sherry in hand and that brings on red cheeks and too much giggling, which always irritated my husband as I don’t drink alcohol.
    So it is bah humbug in this house this Christmas...
    I am of course sobbing as I write this as I feel so lonely and sad for myself.
    I have always been a happy person, always loved Christmas, but what is the point? I’m slowly mentally disappearing.
    I’m such a misery these days and get almost all my comfort from the lovely people on here who do understand, so thank you xx
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border

    It is a huge effort to do the things you used to do when you are so mentally battered by all that is going on around you. Try setting yourself just one little Christmas task as the day gets nearer - perhaps a Christmas wreath on the door - takes little effort and shows the world a brave face.

    Then maybe a tiny little tree....... I, too, absolutely loved Christmas, especially as my birthday is just before - but, what is the point? I have asked myself that. For the last three Christmasses my OH has come up with some sort of health drama that has at least once been life threatening. That is not to mention his behaviours with dementia - I too wondered why bother with Christmas.

    This year I have a big birthday with a zero on the end - blow it !! I am inviting family and friends from far and near - it might be a disaster, but I am giving it my best shot. May be Christmas 4 will work out.

    Then on The Day it will just be me and him - no conversation and him annoyed because the TV progs are different.

    Hey Ho!!

    Wreath on door.... may be a titchy little tree??? and a little treat for yourself, something you will enjoy, could be a 'sweet treat' or a special Christmas Pud, or a new perfume, or even an advent calendar - I will stand at our door, and listen to the church bells calling for midnight service - won't go- can't go - but will hear the bells.

    My dear, promise that you will make just a little Christmas for yourself - lots of people living alone are lonely at Christmas, and most of us here are alone, even though they live with someone...........
     
  5. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you @maryjoan
    Although it has been just the two of us, and that is the way we wanted it, I never felt alone. But life is so different now. I know you will understand.
    I have talked about Christmas with my husband, all he wants is to have the wreath on the door. So that will happen, and we will have holly in abundance.
    One problem is that all our decorations, some of which hold wonderful memories of our life and holidays, are in the loft. I can’t, and never have gone up there in 32 years. Last year my husband put the boxes up there, but it was scary as his mobility was so poor. Since then things have gone downhill rapidly, so it is just not feasible. Will never happen again.
    But hopefully we will have each other. And for that I’m so very grateful.
    It’s going to be hard, so much is different. I have lost my best friend who was my comfort blanket, I have to go in to hospital in January, I have to find a care home to care for my husband for 2 weeks. I’ve never done anything like this.
    And I dread what is to come in 2019.
    I’m sorry if this post is miserable. I’ve just reread it and I still get shocked that this is now our life. But I still have him, sometimes it is better than others.
    Thank you for your post... take care, love Bx
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    No, not miserable, B, just how you feel and that is understandable.
    I try not to plan too much. Last year we just had a very small tree with a few old but memorable decorations including two tatty birds, bought when we were as poor as church mice. I could ill afford them but it was an act of defiance against a run of ill fortune.

    I prefer the trimmings as I dislike meat, one year on our own I stuffed a chicken breast, rolled in bacon. sliced it looked festive. I majored on the trimmings.
    This year, still too many weeks, too many medical appointments.
    I have put a few little treats aside as I order. We are partial to choc hearts only available this time of year. We have a few special CDs for Christmas too. So it will sound and taste different.
    My husband's diet is restricted, so that limits us. I will buy in some good fish etc
    No present for me, so I have splashed out on a jumper with two cranes, it looks festive enough but I can where it after.
    I am not asking what my husband wants I will just do a few things for him.
    There is a preciousness in it all, we live on a knife edge, I am sure you feel that too.
    Take care B, little and often. I have said every day is Christmas now, so if we need something we live in the Moment. Give your self a big hug from me. Xxx
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    Love to you for this, see you on here on Christmas Day! Never quiet alone on TP. X
     
  8. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Dear @AliceA ... it warms my heart that I get such warm, helpful and caring responses, thank you.

    I can’t put food treats aside.... I would eat them! I’m hopeless, no willpower!
    This year I doubt we will bother with buying each other cards, let alone presents. My husband can’t go anywhere on his own, he can’t buy online as he can’t operate his computer now (something that is a blessing as I worry what he might do with his credit card).
    When it was our wedding anniversary and my birthday I asked him if he would like to get me a card. I drove him to Sainsbury’s, but I know he really struggled. The cards he bought were so unlike what he has always bought. It just brought home to me that he doesn’t think in the same way, something is missing, and the cards he bought upset me. I’m not sure what will happen this year.

    I bet you will look gorgeous in your new jumper. Surely worth a picture ....?
    You are right about preciousness and living on a knife edge. Nothing is ever easy anymore, everything is a challenge. It upsets me that people, especially those that are supposed to care about us, have no idea what we are going through. But the last thing I would want is for anyone to feel sorry for us. We are stronger than that.
    Take care, and thank you for your hug....
    with much love to you, B xx
     
  9. mickeyplum

    mickeyplum Registered User

    Feb 22, 2018
    100
    I know how you feel about celebrating your anniversary. Our 60th Anniversary was last year and in the months before that I was determined to do nothing as it would mean nothing to my husband. Under family pressure I finally agreed to 'Afternoon Tea' for family at a lovely cafe. I was so glad we did that.
    My husband enjoyed it in his own way and promptly forget about it afterwards even when he saw the photos. But hey, a happy marriage is always worth celebrating for what it's been for all the previous years. Even if your husband doesn't realise what it's all about, you can be proud of what you've shared together over the years. So Congratulations to both of you from me!
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    Well, I did try the chocolate cashews! There are now in such and awkward place I hope I will not be tempted!
    I have told my husband that love is enough so we do not need presents.
    We said anytime presents are better. Not that he can shop or use the computer now.
    Quite a change of character as I loved surprises! I was always the first awake ahead of the children.
    I used to really enjoy the Christmas preparation at one time but how things change.

    I am getting used to buying myself the occasional treat, I bought a scarf the other week, to brighten up my easy care clothes. He did get some money out of his pot, as he wanted to buy it for me. I will really treasure this.
    Rare events mean so much more.

    This pot makes him feel enabled, it is seldom used. It is all about dignity isn't it. When we did go out he paid for coffee, such a struggle though, it twisted my heart. With love back, it is so good to get support here. Alice


    P.S This will make you smile, just had a caller telling me people as old as us go skydiving etc, that we should walk more. I really struggled today to get prepared for next weeks appointments! Good job I see the funny side!
     
  11. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Hello @PalSal
    I just read your post and so many of your comments resonate with me.
    We are not supposed to be jealous... but why not? We have had so much snatched away from us. I am happy for people still going on holiday, going out with friends and family, but I’m also envious that we can’t do these things anymore. We struggle to have lunch out locally. I’m constantly on edge because of his incontinence. He panics all the time in case his pads leak. I have yet to find a pad that will last longer than 3 hours, and that’s pushing my luck! Then if something doesn’t suit him he will get angry, raises his voice, I get embarrassed... tough isn’t it!
    Yes, I still have my husband with me, I feel guilty because I sometimes think life would be so much easier without him. Then I’m ashamed. How can I possibly think that?
    So I feel like you, I want him, I need him, I love him, I don’t want to lose him. But.... it would be good to have peace, quiet, and me time, just occasionally.
    We are so confused. We are carers whether we like it or not. We didn’t ask for this life, so we are entitled to sometimes, just sometimes, feel bitter, angry, jealous, envious... without feeling guilty.
    You are not on your own, I’m there with you. Love Bx
     
  12. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    Congratulations to you from me, 1957 was a good year! We did not plan for the day, but did accept a quiet lunch with a daughter. We had been drip fed, without mention of our 60th, family commitments. They had been planning to get people together for a year. I had the last laugh though as two days before I ended in A&E causing ripples of panic as what to do! So with plasters and feeling shaky we did get there, with some very strange photos. This year just us two but enough. X
     
  13. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Ok @AliceA ... skydiving. One day. That is what we will do.
    We will prove them all wrong, we will do it. I’ll provide the tramadol for our painful joints.
    How lovely about your new scarf, treasure it, it is very special.
    I’m looking into those chocolate cashews. But to be honest I just love cashews.... and chocolate.... and cashews.... and chocolate.
    Hope you get the gist. Bxx
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    At least the scarf will fit if tempted! It is long and wide. X
     
  15. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Big enough for both of us. :) ...... Bx
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
  17. mickeyplum

    mickeyplum Registered User

    Feb 22, 2018
    100
    Congratulations to you too. Would any of us have imagined 60 years ago what life would be like now? I don't think I gave a thought to anything further than the following week. Still it's good we've lasted this long.
    For the past 2 years I've bought my own birthday card and anniversary card then given it to my husband to sign on the day. He puts his love and kisses on it.
    When I open it it's like when Mr Bean keeps opening the same Christmas card that he puts in his own letter-box every year. Like him, I'm full of surprise and joy at the sight of it and lovngly put it on display.
    As for presents - we havedn't bought each other anything for years. Nothing to do with dementia, just that we've never needed anything.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    We are trying to give stuff away rather than accumulate. We need very little, we do very little.
    60 years ago we had very little. So have come full circle in many ways.
    Even just being together brings a similar sense of joy but without the energy of youth!
    If I had a wish granted, it would be more energy to for my new role.
    The 'in sickness and health' vow seemed easier in early twenties.

    When we look at the diverse group of people we now call our family it seems unbelievable.
    Just two people, a whirlwind romance, the chances we have taken in our lives.
    60 plus years ago we could never have imagined this.

    I think physically it is difficult for older Carers but I really feel for younger couples who have had plans dashed.
    Emotionally the pain is the same but we did enjoy the adventure of the early retirement years.

    I love the image of Mr.Bean! X
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,254
    Oh my darling one. With you all way. I didn't do Christmas last year (keith still at home) because I was just too exhausted, even to do cards or anything other than put a little model robin on the table. Strangely I found that just being an observer of Christmas was interesting and rewarding in itself. I know, I would not have believed it either ...
    With you all the way darling, with you.
    with love and best, Geraldinexx
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    Geraldine, you are right we have to do what we feel we need at the time. It can vary so.
    Last year, we watched the Service on TV. It was from the Church where my brother in law married 80 years earlier. My husband remembered being given a horse shoe to give to the couple. It was a lovely service, we knew the area well. It brought back memororid too.
    It was as if we had been given a very special gift. Sometimes there are gifts out there waiting. Never plan too much.
    Xxx
     

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