A Dementia Christmas

 

Shelley’s daughter, Courtney, flew in from New Hampshire to visit her Texas family. Mackenzie, her adorable daughter, came with her.

I had been telling Shelley for weeks they were coming. Did Shelley understand? I don’t know, but she has moments of clarity, so perhaps she did.

I’d say, “Courtney and the baby are coming.”

At times, she’d reply, “Bebe bebe.” This woman used to be exceptionally verbal and outgoing. She can make appropriate comments at times.

When the day came, I believe she recognized Courtney, but she didn’t seem to register the baby,

I don’t think Shelley understands Christmas, either. The facility has decorations, and I bought her a Christmas sweater, but dementia or Alzheimer’s has a way of robbing people of memories and perception.

Because of dementia, this could be Shelley’s last Christmas, but no one knows.  Shelley was diagnosed with dementia/Alzheimer’s in 2014, so we are about to enter the tenth year. Young adults with early-onset dementia usually live eight to ten years. That’s what statistics indicate, but Shelley’s dementia seems to defy the odds and data.

Shelley is a Christian, and I know she will transfer her spirit to heaven at some point.  When she does, she will be Shelley again, the Shelley before dementia/Alzheimer’s robbed her here of body and mind here on Earth.  Her daughter says, “She will be free one day.”  And indeed she will be freed from this body that doesn’t cooperate and a mind that can’t comprehend.

Helpful Hints for Caregivers.

1.    Talk to the dementia patient as if they understand everything. Sometimes they do.

2.    Sing to them. Even if you warble and are off-key, people with Alzheimer’s like music.  I always sing “You Are My Sunshine.” I started singing it once in the main room, and many of the residents joined me in the song. I continued and sang other songs with them. My dad did not have Alzheimer’s, but he suffered a stroke and lived in a facility. After a visit, I told him goodbye. As I left, he started singing his favorite hymn. “When They Ring Those Golden Bells.” I stopped in the hallway and listened. He had a beautiful bass voice, and the song carried throughout the building. When he finished, several patients yelled, “Sing it again!” And he did.

Music is important.

3.    Even if the staff gets perturbed with you for asking questions, keep asking. I am Shelley’s voice. I’ve heard caregivers say, “I don’t want to make the staff mad.”  Hey! I don’t want them angry either, but if your loved one isn’t getting the proper care, you must speak up.

4.    If you are too shy, find someone to help you. I’ve had several caregivers come to me with problems they face with staff. I often suggest they call the ombudsman, or their state office for human services.

5.    What to do when the blues of caregiving come your way? I don’t know the answer to that one. This long goodbye of Alzheimer’s is a heartbreaking journey.