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.