Last Christmas?

Darkest Night: West Shore Unitarian Universalist Church

Tonight at our church's Darkest Night Service (where we recognize not only the longest night of the year but also the fact that for many people have grief, sadness, and loss over the holidays), I lit a candle for Mom. I knew this Christmas would be hard for me since Mom is now in hospice and this may be her last Christmas with us, but I did not realize how much it affected me until I lit the candle and said out loud "This is for my Mom because this might be her last Christmas."

I don't know if this is technically Mom's last Christmas and now that I think about it, I feel like last year might have really been the "last" one. Last year was the last Christmas she was able to talk to her grandchildren, bake cookies, or open a gift. That was the last Christmas that she spent doing many of the things she always loved to do.

Every Christmas we would make dozens of Christmas cookies, her most famous being sugar cut outs and gingerbread. Then all of the kids and grand kids would gather together on the Saturday before Christmas to decorate the cookies. Last year she was able to help me make at least one of her Christmas cookies but tonight I made the dough for the gingerbread in my house by myself. No mother to make sure I was doing it right and to share the memory of making these cookies together that I have had for my whole life. I am taking the cookies over to Mom and Dad's tomorrow with my husband and son to decorate with Mom like we have always done, but it won't be the same. She can not move her hands and arms to help decorate or even hold a cookie. I know the important thing is really the time we spend together, not exactly what we are doing, but it is still just sad.

Decorated Christmas Cookies (We love our sugar crystals!)

It is difficult to have lost your parent but also have them physically here. You know their spirit is still here and you can see it in their eyes at times but you can't have a conversation with them, create things together, or do really anything together that you used to do.

We of course will make this the best Christmas we can for Mom and bring to her things that she loves about the season. Her grandchildren decorated her house and Christmas tree for her. We will make cookies together in the best way we can. We will eat together, let her see her grand kids open gifts, and laugh with her. But I have to admit that in all the joy I feel of her being here and being able to spend time with her, I am still sad.

Blessings,

Rev. Katie

Dealing With "Dementia Loss"

Mom has progressed so quickly with her dementia in the past three months, and as the holidays are approaching I am thinking about how to handle the holidays with a loss. By loss I mean what I would call "dementia loss" which is not death of the body but loss of relationship with a person, loss of ability, and loss of communication. 

Last year she could make her famous Christmas cookies with me. Last year she could give advice on cooking the Thanksgiving turkey. Last year she could walk, talk, feed herself, and go to holiday events like our annual extended family trip to the West Side Market. This year is so different. We can't really chit chat about tips on making stuffing, or walk through the Market together and get the mincemeat for the pie. We will have to feed her her holiday dinner.

Making Christmas cookies with Mom last year. Christmas 2011.

Mom is still here in many ways and often I see glimpses of her personality again when she laughs at things we say or when she surprisingly comes out with great one line zingers when she looked like she was staring off into space. However, she is not here as well. While I feel blessed when she connects with us through smiles and simple words, we can no longer have conversations together. I can't ask her for advice on how to make a fantastic holiday like she always did. It is devastating to be with your own mother and never have an actual conversation. Every time I am cooking and mess something up, I go to the phone to call her, but then realize I can't. I try to embrace what we still have, but I do realize how much we have lost.

I try not to think of all of the things we have lost because that makes me too sad. I try instead to think of ways to still include Mom in what she always loved so she knows we care about her and want to help her do what she likes. 

Mom can not really move her arms and hands anymore so I can't make cookies with her this year. Instead I can make the cookies while she sits at the table and I can talk to her while I do it. She can not go to the West Side Market but at least our house is accessible enough so that she can come for a few hours of the party in her Broda chair. We can't decorate the Christmas tree together, but I can bring out the ornaments and talk to her about them as my son, husband, Dad, and I hang them on the tree.

This holiday season will be hard for us like it is for so many people who have their first holiday after a loss. You think of all the things your loved one would have done or would have participated in. You see the glaring holes that are left where your loved one used to be. The thing that is so hard about "dementia loss" is that you keep losing the person over and over again and there is not really any closure. This year is a significant loss and next year if we have lost Mom in body as well, then we have another holiday season of grief and loss on another level.

Blessings to you during the holiday season,

Rev. Katie