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    My Wife, Dementia, and a Silent Christmas

    Dunno
    Dunno Member Posts: 74
    100 Care Reactions 25 Likes 10 Comments First Anniversary
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    in Caring For a Spouse or Partner


    My wife, always the model mother and grandmother, used to host these epic family feasts. Christmas, Easter, Thanksgiving, birthdays - our house was a constant whirlwind of delicious food, personal touches like overflowing Easter baskets, and thoughtful gifts for everyone. She poured her heart into making each celebration special.

    But dementia has changed everything....Now, on a good day she's a stage 5, on a bad day, a 6. Those festive extravaganzas are a distant memory, and I'm her 24/7 caregiver. We manage, but I'm bracing for a challenging year ahead.

    My main gripe?.... Not a single phone call or text wishing my wife a Merry Christmas from our children and grandchildren or friends. The whole family, except us, spent Christmas with our son just a street away.

    I've read enough about dementia to know the "Cavalry" doesn't always ride in. But still, good grief! This silence stings.

    Maybe I'm just rambling,...grieving,..clinging to the past. But this harsh reality is so different.

    Thanks for listening.

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    Comments

    • M1
      M1 Member Posts: 6,788
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      Welcome to the forum, your observations are completely valid and yes, it’s very painful. I think family and friends mostly withdraw because they don’t know what to do, and fear overrides. Honestly, I would encourage you to be very vocal about what you personally need: tell them what would help. If there’s a way to do it without sounding critical, you’ll probably get a better response. Not “I really resent that none of you wished your mother a Merry Christmas,” but more on the line of “It’s been pretty quiet, it would really make me feel better if you could call or come by this week.”

      this is a good group. I wish you well.

    • PookieBlue
      PookieBlue Member Posts: 202
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      Dunno, I’m so sorry people are like that. Your wife sounds like a terrific lady. This life is lonesomeMy DH can’t be left alone. On Wednesdays I go to a local support group for two hours. We meet at a memory care center and our PWD can stay for day care at the facility while we meet. They don’t charge us for that. I also pay for occasional additional day care. My support group is very helpful. Maybe you can find a day care situation like that. Most people don’t want to get caught up in our world of dementia. However, The folks in this forum can be very supportive and helpful. This journey has ups and downs and requires so many changes in ourselves. Make sure you find as much ‘me time’ as you can. Vent as much as you want. We understand.

    • Dunno
      Dunno Member Posts: 74
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      M1, I agree. I should have added that she doesn't seem to know or care.

      That You PookieBlue.

    • Dio
      Dio Member Posts: 774
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      I, too, felt angry/disappointed toward a couple nephews who didn't express care or reached out just to ask how we were doing throughout this journey. While they're not our children (we have none), we've treated them as if they're our own flesh and blood from their birth to present, with the younger one just turning 21. They're adults now, so I refused to make excuses for them. Simply put, I conveyed my disheartened and disappointed sentiments without attacking them. It was like a light bulb had been turned on for them and the turn around was swift. They said they had stayed away because they feared saying the wrong things and offending us. So I suppose many people truly don't know how to handle PWD. Regardless, I believe it's healthy to communicate how you feel to your children in a calm manner without resentment (as M1 also suggested). Wishing you a positive outcome.

    • Denise1847
      Denise1847 Member Posts: 879
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      My Wife, Dementia, and a Silent Christmas

      Dunno

      I am so sorry. I am always amazed at how thoughtless others can be. While I could make an excuse for them that they don't know how to handle the situation, it is just wrong. Sending you hugs.

    • Brokenhearted in Illinois
      Brokenhearted in Illinois Member Posts: 70
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      I am in total agreement. My family does not fully understand and can be very thoughtless. I agree - make a request - not a complaint. You will get what you want. Stay well.

    • upstateAnn
      upstateAnn Member Posts: 117
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      your family is cold. I am so sorry.

    • M1
      M1 Member Posts: 6,788
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      So glad you were able to have that talk. Hard on you too.....

    • PookieBlue
      PookieBlue Member Posts: 202
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      I hear you, dunno, but you are bearing the brunt of this disease.

    • trottingalong
      trottingalong Member Posts: 556
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      I’m so happy to read that you did have that talk. Don’t forget to let the family know that you also have feelings and it’s also lonely for you. My DH mother had Alzheimer’s. Her children (boys), really struggled seeing their mom deteriorate and so avoided going to their parents house. I was visiting my father in law one day and he told me how lonely he was now that everyone avoided dealing with mom. I made a point of telling my DH and his siblings. None of them had really thought about dad because he was so good at taking care of everything. After that, they did check in more often and helped their dad when needed. Now my DH has t Alzheimer’s. Being able to at least talk to our adult children does help.

    • garyb53
      garyb53 Member Posts: 1
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      Dunno, my wife is similar to your wife in that she always had big parties for the holidays. She always made special cookies each year (About 10 dozen) to share with all of the kids. This year she told me she just can't do it anymore. The stress, the memory issues, all make it hard for her to cope and continue with some of those traditions. Because she can't then that leads to the stresses of I'm not good enough anymore, etc.

      Along with the cognitive decline she has had bouts of delirium that last a few hours to as long as a week when she was hospitalized. It makes it all very difficult. On top of that the kids and family shy away from her because they don't know how to deal with it either. So I'm the sole caregiver who now cancels any off site activities to stay home with my wife. It is very stressful and I'm now looking for a caregiver that can come in a few hours a week to give me some relief.

      Good luck with your wife and with your health.

    • AnderK
      AnderK Member Posts: 125
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      I am sorry for your isolation. I agree with those who commented that people, even those closest, don't know what to do, and really have no idea of the impact and toll this all takes on the caregiver. I have been told I need to ask for specific things from my partner's siblings. I understand that I do, but it comes back to the category of "one more thing I have to manage ". But manage we must.

      My heart is with you.

    • harshedbuzz
      harshedbuzz Member Posts: 4,956
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      @Dunno

      I am so sorry. I'm glad your son came and you were able to talk. I get that it's hard to watch someone you love slip away. But like a lot of things, adults do them anyway.

      Please make your needs known; it sounds like however wonderful your wife is, she didn't quite finish raising her children to be thoughtful adults. My own mother was similar in modeling giving behavior but not fully instilling it. By virtue of birth order and distance she had never been in the role of caregiver for her parents or any of her older siblings so I was blissfully ignorant of the dynamics. I had to pick that up out in the world as an adult.

      HB

    • Denise1847
      Denise1847 Member Posts: 879
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      garyb53

      Just a thought here. Could you perhaps send a group text to the family members telling them you are really struggling and would they be willing to take turns giving you a break? I suggest a text because it is an easier communication for all who struggle with talking about it and it will give time for the family to think through the situation.

    • eaglemom
      eaglemom Member Posts: 721
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      The isolation from the disease hurts. I'm sorry that you weren't included in the family event, its wrong of them to not include the both of you. Every excuse will be made, but the bottom line is you were hurt. I'm very sorry that happened. Sadly it happens frequently. Your best bet is to be the best caregiver you can be and move forward.

      eagle

    • Joydean
      Joydean Member Posts: 1,501
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      Glad to hear you and your son were able to talk together. Any open conversations will be helpful for you and him. You got to hear his feelings and hopefully he heard yours. Just as we all have to watch our LO disappearing in front of us it hurts, they can’t take seeing their fantastic mom disappearing. Just my opinion but by not being with their mother and showing their love for her they will never be able to forgive their self. Life is not always easy, and your wife did not ask to have this disease! Best of luck to you and your family!

    • Dunno
      Dunno Member Posts: 74
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      yes, watching my wife decline is incredibly painful, and I can only imagine how it must be for my family to witness her disappearing. thank you for your insight.

    • DCCEPEK
      DCCEPEK Member Posts: 95
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      My Wife, Dementia, and a Silent Christmas

      Dunno

      Same here my MIL Ladder stage 6. Our house was quiet. No children, grands or great.

      It hurts but why should they suffer for decisions we make. Man generations change so much. My husband and I know that we're doing as our heart leads. As times move forward you'll see it's better no one is around it's too stimulating. Keep reading and take care of yourself.

    • Mimi50
      Mimi50 Member Posts: 144
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      My Wife, Dementia, and a Silent Christmas

      Dunno

      I am so sorry. You both need that love and support. Our son is 26 years old and we have 2 year old granddaughter. So we went to his house.

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    Commonly Used Abbreviations


    DH = Dear Husband
    DW= Dear Wife, Darling Wife
    LO = Loved One
    ES = Early Stage
    EO = Early Onset
    FTD = Frontotemporal Dementia
    VD = Vascular Dementia
    MC = Memory Care
    AL = Assisted Living
    POA = Power of Attorney
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