Dementia Journal, December 24, 2018

Oldlamplighter

Dementia Journal, December 24, 2018

Oldlamplighter
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 brings us renewed hope in this very turbulent world and that my health holds up.

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Following is the second entry from my Dementia  Journal archive from earlier this year.  I interspersed Dementia Journal entries with other writing of mine, on the Website of  a writing community I’ve been privileged to be a part of for the past five years. I may continue adding entries from that archive following each newest entry.

Dementia Journal, April 23, 2018

Dementia brings a severe loss of memory and awareness of one’s surroundings. Mom will often gets some question in her mind she urgently wants answered. She will repeat it over and over and each time we repeat the same answer.

To help preserve my sanity and that of the caregivers, I’ve written up a series of answers to the most common questions on half sheets of plain paper. When the questions persist we put a stack of these answers on the TV tray in front of her where she sits. Sometimes she will read these answers over and over for nearly an hour. Mom can still read, although somewhat haltingly. She’s a devout Christian and always has been. Her mother, a devout Methodist, instilled this in her. She reads her devotionals, often out loud to us and often in a voice very weak and hoarse from asking questions and talking for two or more hours at a time, often with very little pause in between.

“This is your house. You have lived here for over 23 years.”

“You are home in C____”

Mom will often ask, “Where am I?” “Am I home?”
How long have we lived here?” “Is this our first night in this house?”

I’m tempted to say, “No, Mom, you’ve been here more than 7,000 nights.” (2,400 + for me since I’ve lived here with her since 2010). In another life, I had my own place about 3 miles from here and lived there for 15 years.

Sometimes she can’t be persuaded this is where she lives. The other night she looked all around the den and said, “This is one of the nicest hotel rooms I’ve ever been in.”

She also talks about going back to the small city about 100 miles from here where she grew up. One morning she said something like this, as I recall, “When is the train coming? We don’t want to be late.”

Fairly often she will start endlessly asking about her children. “Who are they?” “Where are they?” “Do they come to see me?”

“You have three children. F_ lives here with you.  N__ lives at the beach.  J____ lives in Seattle.”

“Where are R_ and  B__” (two of her three sisters, all of whom passed away quite some years ago). She will also ask what happened to them.

“B__ and R_ died a long time ago and are in Heaven with God.”

“Where’s Mama and Daddy?”

“Your Mama and Daddy are in Heaven with God.”

“Where is N____?” This could be either my brother or my father who died in 1992. Both have the same name.

“Dad died a long time ago. He had cancer and you took care of him.”

When she’s really confused, she’ll say, “Why didn’t anyone tell me? Did I go to the service?”

Mom’s been sleeping a lot, most of the day and all night now. I am thankful for that. But when she wakes up she is often disoriented and says she feels terrible.

“Am I dying?”

“I’m dying.”

The other night she was so convinced of this she had a panic attack. “I’m dying and you don’t believe me,” she said, her voice rising in fear. “Please pray for me. Dear God, please help me.”

After about a half hour she’s exhausted and sleeping peacefully, her head on a pillow on the sofa. Of course she remembers nothing of these episodes. But I sure do. They cumulatively take a toll on me, as you can imagine. I told my sister the other night that I certainly hope I will know if can she is indeed very near. But lately I’m not so sure.

We’ve written these words to read when she gets extremely anxious and thinks she’s dying. When we check her vitals, most days they are all very good. To the best of my knowledge she’s okay. But she’s 94. She fears the unknown. Wouldn’t you?

“You are doing well. Everything is ok. You are not dying. You are fine. We love you.”

One of the caregivers wrote this for her:

“God keep me safe. Protect me. Comfort me. God give me peace”

Amen.

Postscript: it’s late on a Monday afternoon on April 23. It’s been raining all day, but we really needed this rain. The day’s only caregiver/home health aid called in sick. I just took out the garbage and the recyclables. That was the first time I had been out all day. Mom’s been mostly talking and asking the same questions since about 3. But she’s been so sweet and calm. She just asked, “Who brought me those flowers?” “I did, Mom.”

“Thank you, F___, for the beauty you bring into this house.” That made my day.