It was Easter Sunday. A little less than a year after my Mother had been diagnosed with Lewy Body Dementia, at the age of 61. There were about 10 members of the family gathered around my Aunt’s dining room table. The mood was slightly less jovial than in previous years. It was a little, but not much quieter. It was all due to the fact that we had an extra at our table. Dementia was our plus one.
Instead of rushing in and out of the kitchen, initiating and taking part in the multiple conversations of the day, laughing or rolling her eyes at my Grandfather’s (her father’s) jokes, she just sat in her chair. It was at one point during the meal, when things were banging around in the adjacent kitchen, and two to three sets of people were having different conversations, and music was playing, and the dog was barking, that I realized this was entirely too much for her. She was shutting down. I followed her gaze and realized she was staring into space. She hadn’t taken a bite of food. She just wasn’t there. It was her way to cope, I learned later, with too much stimulation. It was too hard to follow, too hard to focus, so she went inside herself, and shut down.
The holidays are upon us. This time of celebration may not be as festive because of your unfortunate plus one. If you have a loved one with Alzheimer’s or another form of dementia, let me gift you some tips that may help. We’ll do it through the word GIVING.
G: Gather earlier. People with dementia tire easily. If you typically have a holiday dinner, make it a lunch. Your person will probably be more alert earlier in the day.
I: Involve your loved one in the process. She may not be able to whip the sweet potatoes and add the proper amount of butter and brown sugar, but she can probably put the marshmallows on top. She/he may not be able to set the table by putting the fork, spoon, cup, or napkin in the proper place, but in reality, does it matter if someone has two spoons? You can fix it later. She/he helped. It makes her feel good. Will she put the ornament where there are no others? Maybe instead she can hold the box on her lap and you can reminisce about the old ornaments. Their short term memories may be gone, but many of the longer term memories remain.
V: Visit one on one or two on one with your loved one with Dementia. It is a disease that affects processing. So one person looking her/him in the eye, asking a simple question or making a relatively simple statement, and waiting for a reaction, will be easier for them to process. Again, talk about the old times, sing old songs. Music is an amazing way to connect with those with memory issues.
I: Identify distractions. When the television is on, three children and running around the room, two brothers are having a spirited argument, and the lights on the tree are blinking, your loved one is going to want to go to another room and take a nap. It’s too much stimulation for someone who has trouble processing one thing. Reduce the distractions, make the environment calmer. This is the time to adjust your expectations and make new traditions. Your holiday isn’t being ruined, it’s changing. There is a plus one here now, you need to try to make them comfortable. (blinking lights cause confusion, perhaps it would be a good idea to switch to white lights that don’t blink.)
N: Never neglect yourself. Caregiving is hard. It’s the hardest job ever, I contend. This disease is an emotional roller coaster. Have others bring side dishes. Buy fewer presents. Attend fewer events. Breathe. Cry. Take a nap. Get a massage. Take time to pat yourself on the back, because you are doing the best you can.
G: Give Thanks…for the time you have with your friends and family. For the moments you have with your loved one with dementia. Revel in those special times, and let them fill you up. You person with dementia is in there, I promise, just keep giving them love. They feel it.
This Thanksgiving will be our second without Mom. She died at 65, after just four years with Lewy Body. Our plus one is gone. I promise to sit at the table with my family, and be happy to be in their presence. And I know Mom with be with us.
Hang in there. #ENDALZ