The Great Cosmic Melon Baller

Saw mom last night and she was in rough shape.  Food stains on her clothes, nose running like a faucet, disoriented (more than usual), couldn't form words and kind of shaky.  She's developed a cold it seems and this is how it always is.  She gets wiped out, can't function and just loses herself.  So, after much cajoling I got her toileted and dressed for bed.  Mom tried to wash her hands but got confused when it came time to dry them.  The towel bar is right where its been for the last 2-1/2 years but she stood there with wet hands trying to dig in her sleeping pants for a kleenex that wasn't there.  I dried her hands gently with the towel and she thanked me.  Next I prompted her to start brushing her teeth and she began the process easy enough.  I went into her room to turn down the sheets and tidy up a bit and give her a little privacy.  I feel like she doesn't need anyone in the bathroom breathing down her neck, hurrying her along.  So I popped back in a couple minutes later and she was leaning way over the sink trying to drink from the faucet and getting water all over her face.  I asked if she wanted a cup and she nodded so I got one, filled it with tap water and gave it to her.  She thanked me again and five minutes later we were on our way to her bed.   Another ten minutes and I had her tucked in, kissed her on the forehead and assured her that I would be sleeping in the next room and that I would wake her in the morning.  I wouldn't let her sleep through breakfast.  Mom smiled and wheezed and her nose ran and she said "Nighty night" in her tiny lilting voice just the same way she always has since I was a child.

I left the room, told the nurses that mom had a cold and was tucked in bed and then I carried on out into the world. 

Dementia is a cruel disease.  I imagine this great cosmic melon baller swooping into my mom's brain and taking another scoop away every so often.  When I'm there to see it happen and to watch her forget another simple task I feel nothing but sorrow.

A Few Words About Feces

Everyone poops.  If you have a small child or a pet you know about dealing with another being's poop because you have to pick it up, throw it out or flush it on a daily basis.  No big deal.

However, dealing with another adult's poop seems to change the game a bit.  I say this because people suffering with dementia tend to forget the basic rules about poop:  

Don't shit your pants, if at all possible

And, if you do, don't touch it with your bare hands

Needless to say, both of these rules were broken this Sunday while mom and I were at Easter brunch.  It was one of those heartbreaking moments in my life with mom.  She couldn't help it, it's not her fault that the dementia has taken away big chunks of her brain.  So there we were, in a cramped public bathroom stall, dealing with poop.   And I dealt with it as a kindly yet authoritative nurse's aide.  I told mom to not touch the poop anymore, that I had it under control and that it was her job to sit on the toilet.  She resisted so I looked her in the eyes and said it's my job to take care of her right now and she needed to respect that.  Her shoulders lowered, she sat down and I sprung into action.  I had no wipes, no extra diaper and no washcloth but I got her taken care of with the swiftness of a professional.  We exited the bathroom and carried on with our day like nothing happened.

However, on the inside I was sort of breaking down.  But I deal with my son's and my dog's poop on a daily basis.  What's the big deal?  I toilet mom on a regular basis, poop and pee, no problem. Maybe part of it was that we were out in the world with no supplies, not in the relative safety and seclusion of her own private bathroom.  I think there's more to it than that, though.

After much rumination this is what I've come up with:

I think I'm struggling with unlearning what my culture has taught me. That I've been taught to ignore the inevitable reality of aging, dementia and dying and all the unsavory aspects that it entails, including poop.  That I haven't been given the coping skills to deal with these issues, that these nasty situations should be avoided at all costs and that it's shameful to shit your pants. 

And this is what I'm working on:

There's no shame in inappropriate pooping.  

Choosing to will these unsavory aspects of dementia out of existence is not an option.

So it sucks and it's not that bad, all at once.  And next time, I'll bring supplies.

You Just Love 'Em

The following entry is a bit I posted on the radio program's Speaking of Faith website.  I've also attached a link to the site at the bottom of the page.  At the SOF website there's more stories from caregivers, a discussion about dementia and some other relevant info.

I am my mother's caregiver. She lives in a secured dementia unit nearby and I've been caring for her for the last 2-1/2 years. I also have a 3-1/2 year old son so I am very aware of being part of the so-called "sandwich" generation. I find it very challenging to be split between two worlds. My son is learning about his surroundings at lightning speed while my mother is retreating inward and losing her grasp on reality bit by bit. She's forgetting how to use utensils, she can't toilet herself, and language is an increasingly frustrating thing for her. Fortunately, she is always in a good mood and happy to see me, even though she's not quite sure who I am. Sometimes I'm her sister, other times I am a kindly helper. She seems to know that I belong to her somehow but she's just not sure of the particulars. I never quiz her about it; asking her who I am just seems to put her on the spot and she gets embarrassed. I just accept what my role is for that visit and carry on. One of the surprises that I've discovered about her is that she has maintained her keen observations about raising children. She raised five of us and the wisdom she gained from that remains firmly intact.

Some of the best advice I've received as a parent has come from my mother. My son Henry and I were visiting her in the nursing home and Henry was hopping around the room eating my mom's cookies by the handful. I was busy toileting her in the adjacent bathroom so I had to be okay with that. It kept him busy and not too destructive. When Mom and I came out of the bathroom, Henry had spit out a huge mass of chocolate cookie on her brand new bedspread. She was curious about the gloppy mess, not upset, she just wanted to know what it was. I was trying to remain calm because the food spitting had become one of Henry's annoying specialties and it was currently working my last nerve.

So I tried to explain the situation: "Mom, I don't know why but Henry's been spitting food out for the last couple months and it drives me crazy and I can't reason with him because he's just so flipping willful. What do I do? It doesn't matter what I say, I just can't seem to stop him from doing it." I wasn't really expecting an answer, it just felt comforting to commiserate with another mom.

So I was floored when she simply said, "Oh, you just love him."

That was such a perfect response to a very frustrating situation. Mom wasn't judging me or making overly simple suggestions or blaming the child. She was telling me in simple terms that raising children is extremely challenging and that sometimes there's really not much to do about it but love that child and know that this will pass.

Becoming the caregiver for my mom when I was just learning how to become a mother to my own child has been very difficult on many levels. However, I know that she's helping me be a better person because I am learning about patience and compassion and just loving people for who they are.

http://speakingoffaith.publicradio.org/www_publicradio/applications/formbuilder/projects/your_story/story.php?name=alzheimers&response=594437