Managing dementia over the holidays is difficult

christmastreeI feel guilty as we are rolling into Christmas. When my Mom suddenly failed last month and we were advised that we should move her into hospice, I was thinking this would be my first Christmas without a parent. I was both sad and relieved by that idea.

My Moms quality of life is beyond low. She seems constantly agitated and bewildered by the events around her. She still does not understand how she ended up in wheelchair. She never seems to be comfortable. She’s also entirely dependent on someone else to help her do everything, which she bristles about. All I can do is make sure she is as comfortable as we can make her and advocate for her wishes.

Because I didn’t think she would be here, I didn’t order the little Christmas tree for her room she treasured last year. I hurt walking down the hallway filled with wreaths to arrive at her empty door. I fixed that on my next visit and we made a new wreath in the shape of a star for her door together.

The holidays are always difficult. There are new places and faces and a lot of activity. You strive to uphold the cheer of the family gathering, but often find you are managing around embarrassing moments.

We learned to avoid celebrating holidays on a day other than the real day – it just confused my parents when we celebrated Thanksgiving early one year. I have a few posts from the last few years on trying to manage through Christmas. I smile and grimace as I reread these older posts.

My one bit of advice is to simplify activities and enjoy the time and connections you can make with those you love the most. Consider writing them down. My guilt dissipates as I reread my posts knowing I’m doing the best I can. Wished. 

No one has a Christmas wreath up now!

wreathMy daughter has a snow day and the snow didn’t quite pan out, so we decide to go visit my Mom. When we arrive, my daughter finds the Christmas wreath hanging on the back of a chair and asks Nana why the wreath isn’t on her door.

My Mom barks out “No one has a Christmas wreath up now.” A silent “huh” plays in my head and I see the same expression on my daugther’s face. I tell my Mom that “We passed quite a few wreaths in the hallway.”

My Mom doesn’t resort to her prior habit demanding we “prove it“, but challenges me to “show me another wreath” in not a very pleasant tone. I open up her door and point to two wreaths within sight of my Mom’s door.

“Oh, then lets put it back up.”

A week ago her Christmas tree disappeared and we found it hidden behind a chair in her bedroom.

I now have been through it enough and recognize that my Mom is moving through periods where she doesn’t recognize that Christmas is coming. I imagine that she takes it down believing Christmas has passed. She now is unable to really grasp time and it’s passage. When she did this previously, I just thought it was poor memory. Now I recognize that she can’t conceptualize the difference between a week, month or year.

She’s trying so hard to keep it together. We can still sit and have a nice visit together and share a meal – and for that, I’m grateful. However, the deeper she moves into this disease, the harder I sense she’s fighting to manage. Watched.

What happened to your Christmas Tree?

smallxmastreeWhen I arrive to visit my Mom, I ask her if she finished decorating her Christmas tree. She gives me a puzzled look and asks “What Christmas tree?”

On a recent visit, my son and I helped “put up” a baby potted Christmas tree for her apartment. We added a string of lights that are battery-operated and got out the “jingle bells” to hang on the tree. My Mom asked if she could finish decorating the tree, so we moved on.

For the first few nights, I called my Mom to ask how the tree looked. I usually had to remind her how to turn on the lights and she would say the tree looked wonderful in her picture window.

Today, the tree can’t be found in her two room apartment. I take a tour of the community area’s to see if I can find it. I run into the woman who is the head nurse in Assisted Living. She tells me my Mom had a bad day yesterday. She said my Mom was bringing many of her things out into the community space and was agitated.

I start asking about other cues to my Mom’s health, and she shares that lately, my Mom is having more conflict with people in the community. Almost every time she leaves Assisted Living she creates a conflict. The residents in Independent Living are starting to move events she used to attend because she is making it unpleasant for the other residents.

When I return to the apartment, we do one final sweep and we find the Christmas tree in her bedroom behind a chair. She suggests we just leave it there. However, it’s a real tree and I’m surprised my Mom with a very green thumb doesn’t recognize it. We get it out and set it up on a plant stand. I just not sure how long it will last. Perplexed.

While I try to find reason to why my Mom hid the Christmas tree then didn’t want to pull it out from behind the chair, I remind myself that this disease makes no sense. Was my Mom hoping to leave it there so stuffing the tree behind a chair wouldn’t seem like a really odd thing to do? Probably. Should I feel guilty because I didn’t call her every night and ask about the tree? No! But I will. Deep inside you wonder if some shard of loneliness drove her to hide the tree. However, I continue to remind myself of all things I am doing to love her, support her and make her life as pleasant as I can … without loosing sight of my family and needs. Chanted.