The holidays are always a time to show gratitude to those we love, those who have supported and helped us, those who have given friendship freely and the family we sometimes seldom see. There are traditions to uphold, prayers to be said, decorations to be dug out and hung, gatherings to join, food to prepare (and enjoy), candles to light, services to attend, cards to send, shopping to do and the list goes on and on. How in the world can someone possibly do all of these things AND be a full time caregiver? Even a part time caregiver? It is hard enough on a mundane day in the middle of a mundane month, but throw in expectations and stress and the desire to keep traditions alive…it all can be too much.

Pick your battles. Be kind to yourself. Choose the things you must do and let the rest slide for another time. Friends and family will understand. And if they don’t, well, that is their problem not yours. Your ultimate goal is to remain the best caregiver for your loved one AND FOR YOURSELF that you can be. Don’t lose sight of this. Stay focused on what is truly important. Being present. Being who you will look back and respect and be proud of down the road.

I went years without sending out Christmas cards. I didn’t bake anything for a couple of years as well. One year I left presents at home while we drove 4 hours away to my parents. One year I bought presents for some and not for others and even duplicated a few. It happens. We survived. The kids are none the worse for wear. Jim was happy and content. His last Christmas I really don’t think he understood the whole opening and receiving a gift and I don’t think he realized it was that time of year. He would see the decorations in his facility and try to move them and many ended up in his room or hidden somewhere. The kids came and played music for the residents and we sang songs and clapped and were happy. Well, I pretended to be happy. All I could think about was how sad I was Jim was not home with us, participating in our family traditions we had worked so hard to cultivate through the years. I could only see how much weight he had lost and how aloof he seemed. I saw him struggle and needing help to unwrap gifts. I cried while seeing the kids wish him a Merry Christmas as we left him to spend his last Christmas with people who were strangers to him even though he now lived with them 24/7.

Of course we didn’t know it was his last Christmas. Every year since he was diagnosed I would wonder how many more we would have together. His last few I would wonder if it was his last one that year. I would sit next to our lit tree late in the evening, after everyone had gone to bed, and look at the beautiful lights and the ornaments that told a story of our life together. Our marriage, our family, our travels and our love. I would long to have him sitting next to me, as he had done so many times before and I felt lonely, desperate and hopeless. It became such a bittersweet time for me.

While he was alive, I was missing him. While he was alive, I was wondering when he was going to die. While he was alive, I was unable to truly take in the beauty of his life and our lives together and what it would be like when all of it was over. I knew enough to realize I needed to appreciate the time we still had left together. But it was impossible for me to not focus on what was to come and what wasn’t the same. Accepting what was in that moment and being able to appreciate still having his smile and his presence wasn’t happening. I tried. But I just couldn’t do it.

Now people tell me to be grateful for the years we had. Be happy we had such a great life together and we had the love that so many dream of. Be glad I have my memories.

But I am not. I am not happy or grateful or glad. I am without him and think back to what I should have or could have done differently. I recall my bouts of impatience and my inability to save him. I feel guilt for taking away his independence when I told him he couldn’t drive any more. I see his love for me each time I showed up to visit and how his face would light up. His unconditional love and trust. The power that holds over the rest of my life cannot be underestimated.

So, we face another holiday without him. Without his laughter and his help. Without his comfort and his stories. I miss shopping for him. Walking through a men’s department is painful. Instinctively thinking of things I want to get him and then realizing the reality is gut wrenching. We didn’t hang his stocking. We no longer have to buy the Peanut M & M’s and Peppermint Patties. His ornaments aren’t hanging on the tree. But he is missed. He is remembered. He is longed for. He is still with us.

9 thoughts on “Missing Holiday Love

  • Tamie White

    Karen,
    I lost my dear husband Jamie (46) on December 10. I can barely type the words much less accept the loss. Not yet. Not this time of year. Wishing you and the kids as much peace as the season can bring.

  • JoAnn

    As I read this I think of my fiancé Jacob I lost 2 years ago at 54 from early onset Alzheimer’s. I sit here and cry along with you. It is a very hard time of year. Well, every special occasion is. As you, I have the memories but it is not the same as having Jacob. I go on, I think of him everyday and I pray for everyone who is going through this with a loved one. Bless you all, be strong and take one day at a time. JoAnn

  • Daphne demaine

    This is the first Christmas without Ray. He died just over 10 months ago. Everyday I miss him. Last Christmas he was discharged from hospital on Christmas Eve. It wasn’t a great Christmas but at least we still had him with us. Now we don’t. I wish I had known

  • Tracy

    Thank you for sharing your story.
    My father is in a retirement residence and didn’t want to come to our home last weekend when we celebrated Christmas with my Mother (who also lives in there but in her own room), my partner and my children. My Mom has her own issues and you can only do what you do.
    We sent my Mom home with my Dad’s gifts. Mom didn’t give him his gifts to open, and then when she did, she just dropped them off to him and left. We had worked hard to have a lovely Christmas for everyone but I can’t help but feel we’ve let him down.
    We try to live with the philosophy of no regrets.
    I appreciate your story to remind me to revisit Christmas with my Dad and enjoy the time with him in our own way. Make our new memories and revisit and tell stories of past. We need to enjoy the time and not live in the when.
    Thank You!

  • Karen

    Wow! You have put I to words exactly what we have gone through as well. My Jim did not know who we were or what presents were on his last Christmas here on earth. It evokes so many negative memories that outshine the ones I should be remembering. Our children miss him, I miss him, everyone misses him. I am hoping that eventually we will be able to create some new memories going forward, always keeping Jim’s spirit in them. I hope you and your children can soon do the same. MERRY CHRISTMAS AND HAPPY NEW YEAR.

  • Laurie Davis

    This Christmas Season has a pall of dread over it. Down deep in my soul I feel it is my Dave’s last Christmas. It evokes a pain than makes me shudder. I’m barely going through the motions and so glad we don’t have to go through the Christmas commotion with our son & his family. It’s just the two of us. Quiet and I pray peaceful. God is near. So are the angels. Dave sees and talks to his Mother and I believe she is beckoning him to join her in Heaven. He reaches toward the ceiling as he sleeps. God is near. Give me grace, Lord, and bring Dave Peace. In Your timing.

  • Dawn

    I am fortunate to still have my husband with me. Christmas will never be the same. It is very emotional for all of us. Terry cried every time someone gave him a gift. He felt he had nothing to give in return. If he only knew how much he has given us already. I also wonder how many Christmas’s he has left. It so hard to watch him suffer. I am so blessed to be married to such a wonderful man. He is a wonderful father to our two daughters.

  • Jacqui

    Karen Thankyou so much. My husband was diagnosed just over a year ago I suspect its nearer 2 yrs since it started. I am finding it hard I get angry all the time frightened for our future but guilty for the anger as he looks so bewildered and asks “what have I done”. I know the changes are not his fault but still get angry at the world why why why us. I had hardly stopped crying over Christmas as feeling guilty Then I seen your post I am not alone you had the same feelings you said you should have handled it better I don’t think its possible I realise I have to try A lot harder thankyou . I have always relied on him as I am in a lot of bodily pain now I must be the one to be relied on. Its harder for us I think he seems quite happy muddling on. I send my hugs to you Thankyou for helping me

  • Arthur F Stewart

    Thank you for helping me grieve. ..it is time for you to grab life…enjoy…be there for your kids…Thank you for everything. ..

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