Dementia Journal, December 24, 2018

I’ve been in an upbeat mood this Christmas season, decorating our tree for the first time and buying a lot of Christmas-related items for Mom such as small Christmas bears and singing snowmen, and lots of little Christmasy things to put under our little tree. I have been so much more in the Christmas spirit this year then last year at this time when I was going through a bad bout of depression. I was trying to adjust to being newly retired, we had to put down our beloved cat of 19 years, and I had to let go one of our new home aides after a rather strange sequence of events. Everything just seemed to come together to muddy up my life.

This year I feel so much better and am being relentlessly optimistic and encouraging with Mom. She turned 95 recently and has been feeling rather good and sleeping real well. And she been so sweet. But as far as I can tell she now lives only in the present moment. She seemingly has no idea tomorrow is Christmas and has no recollection of the recent week-long visit by my sister and niece from Seattle. As long as I’ve been dealing with this, and as gradually as it’s been happening, I really can’t wrap myself around the idea of having no short term memory. Now she’s coming very close to not knowing who I am, although she always seems to. “Who are you?” She’ll ask. “Guess,” I’ll respond. Invariably she’s always said, “You’re my son.” The other day she paused in our question and answer routine and said she didn’t know who I was. A little prompting and she seemed to slip back into awareness of who I am. It’s still very disconcerting. You’d think I’d be used to it, and I am, but…I realize I’m not dealing with the mother I once knew whose radiant gaze and always, even now, beautiful smile, looks out from any number of photos I’ve taken of her over many decades. I always was the family photographer, and photography is my hobby and passion today. I really don’t know how I’d cope with my 24/7 caregiving life if I weren’t able to at least try to keep up with my photography. It’s amazing how much you can do with very limited free time if something is your passion.

Hanging over me though are some possible health issues I’ll have to deal with in the new year. And my lower back is starting to bother me more often because of frequently having to lift and assist Mom with every normal daily activity. That’s put a damper on my overall feeling of optimism, but I’m not going to let it get me down. I keep well-informed about health and wellness, just as I read a lot about Alzheimer’s and all other forms of dementia. The slow progression of Mom’s dementia has given me a lot of time to adjust, if adjust is really the right word. Maybe “cope” is netter but that’s not altogether accurate either. Caring for my mom year in and year out is my life now, especially in retirement the past year and a half. So, I have to cope and endure, but also I’m growing spiritually and emotionally. No matter how often I get to the point where I want to scream, I manage to get Mom to bed, the night becomes really quiet, and I gain strength in solitude to carry on. I’ve always been this way. Quiet and solitude have been my saving graces.

It gives me a great sense of accomplishment that I can even do this. The surreal aspect is that I must constantly transition between Mom’s world of the endless present and endless questions, to my world where time — past, present and future — is more normally oriented. In many ways I’m ideally suited to this, being a rather introspective loner. Night after night as I sit on the sofa with Mom responding to her endless and reality-distorted questions, I think of what I could be reading or writing about rather than going through the rituals of caregiving. Soon it will be time to get a Mom to bed. That will be preceded by brushing and flossing teeth, using the portable commode by her bed, getting her cleaned up, helping her get in bed, rubbing anti-itch cream on her, assuring her she’s not dying, getting her tucked into bed, and trying to ease her fears and anxiety. The morning routine is even more complicated as it involves taking her vitals and giving her an insulin injection. Sometimes I have caregivers to help me with the morning routine, but I’m on my own at night. This makes me procrastinate about the night routine because it involves so much lifting. If she slides onto the floor I can no longer lift her up by myself. She’s not a petite lady.

It’s 10:30 on Christmas Eve and we’re cozy in our den surrounded by the ornaments, decorations and good cheer of Christmas. It would be more comfortable if our downstairs heating unit hadn’t conked out after 23 years of faithful service. Fortunately it’s only going down to about 40 tonight and we have two small heaters to help us keep warm until the unit can be replaced. I’ve been listening to “Rain” by Brian Crain on Pandora.. So relaxing. Mom is relaxed, too. Thank goodness!

We’re thankful for our blessings, and I pray that the new year bring us renewed hope in this very turbulent world. and I pray that my health holds up.