Miracles?

I had a conversation today with an old friend of Casper's. The friend, like many, truly cares about Casper and calls for updates frequently. By the end of the call I was barely able to listen. Part of the problem was me, and I fully admit it. I have a naughty sense of humor and am prone to speak when I would be better off zipping my lip and keeping my flippant thought to myself. I should probably wear a rubber band on my wrist as a reminder as a matter of fact. My evil twin stops me from stopping myself... you know, reactions are kind of fun to watch and even diagnose at times.

 

For this friend I know better. The diagnosis is confirmed, and if I let my bad twin out when she is discussing her religious beliefs or political wisdom it is never pretty. I am not fond of explosions, either. Laughter is my style (I hope), not temper tantrums. (That doesn't apply to November during election years). Where was I going?

 

So after I describe the last 36 hours in Casper's world- memory loss, trouble swallowing pills, not following commands, not being able to use a straw, mood swings...it's been a helluva 36 hours, said friend uses one of the phrases I dislike most in this world. It ranks right up there with "God never gives you more than you can handle." (That one makes me feel like a pawn in a Monopoly game, and I'm "It" and being screwed with for fun by the man upstairs. Like he has time for that!).

The phrase? "I'm praying for that miracle. She's gonna get better. God just hasn't figured it out yet." I don't know about you, but I despise that phrase. Truly. And I'm not alone in that feeling. When I facilitate the support group for dementia families it's a universally despised phrase. Hospice families as well. Caregivers don't want to hear about someone else's plan for a miracle in general. And caregivers of advanced dementia patients are way too tired to think about what that would look like.

I am not denigrating anyone's beliefs. I actually subscribe to the power of prayer to sustain families and patients as they face terminal illness. But a miracle? Medical science can grow organs now- organs that respond to blood flow and nerves. How do we regenerate a brain that has atrophied and melted? How do we restore a personality? A smile? Memories that have been wiped clean as the folds of the brain are made smooth under attack from Alzheimer's or Lewy Bodies running rampant across the brain? There are actually no research projects in the works on LBD right now. And, by the way, the NIH has no funding while Congress keeps the country shut down but enjoys their private gym. The NIH is the coordinator of research in the US for the most part.

The next statement was she was going to bring Holy Water over and would be lighting candles daily for Casper. Again, blessed be the beliefs of those who share them. But while you are lighting candles we are trying to keep Casper from choking on her own saliva. While you are planning some elaborate trip to find holy water, we are trying to prevent her from peeing on the floor because there are days she can't recognize a bathroom. While I was having the third conversation to make the friend feel better today I was trying to make Casper understand that I was home three times today and it was Tuesday and her sister Tammy is in North Carolina. As a caregiver I don't need holy water- my brother in law Jay and I need Casper to be safe in her own bed, and to be able to understand that she's not safe walking to the bathroom alone. Candles don't help when Casper is fighting the idea of a bed bath because she's too weak to get up for a shower- in fact she was too weak today to lift herself off the bed until late afternoon. This morning I had to give her all of her pills one at a time with a syringe to get water into her. Tonight she paid a huge price for sleeping for most of the last 36  hours without eating or drinking. I didn't need holy water- I needed help in the bathroom with her.

 

Miracles with dementia (and lots of other diseases) come in small packages. With Linda they came in the time she roused from a near coma to look me in the eye and tell me she loved me, and always would, and that our life together was worth everything to her. A miracle came again later as she died in my arms, without the huge struggle that usually accompanies death from pulmonary fibrosis. When my grandmother died the miracle came when the cousins could bond and laugh together (without being heard or seen) as our aunt received messages from our grandma's toes (don't ask- we are a unique tribe.). With dementia miracles come in equally small pieces: a few hours strung together where all is "normal"; your loved one knowing who you are after not knowing you the day before; Casper being willing to take her meds and not thinking I am trying to poison her; tonight when she could use a straw again; a real night's sleep; pain under control; a meal prepared and laundry done.

 

In dementia land caregivers do not expect their loved ones to turn around and regain the use of their brain. That precious organ that makes us who we are is atrophying and melting. It cannot recover. Stopping the disease progression where it is would be cruel. In our world miracles are moments of peace and quiet. Dreams of better times. Happy memories. Moments where we are reconnected and the disease is not running our planet. And friends who understand that we appreciate the good wishes, thoughts, prayers (we say them too) but that we also wish we could bring peace to our loved ones and a reality check to those who spend their time on the phone, not visiting and giving our loved ones a sense of friendship in person- a living memory of who they really were and are.