WWF

Checked in on mom last night and there she was, watching wrestling on a tv much bigger than mine. There were others in the tv arena, all more or less watching the box as well. I wonder what people with dementia think about wrestling. It's such a bizarre 'sport', sort of beyond explanation. The outfits, the announcers, the prancing about and posturing. And, of course, I couldn't get a straight answer out of Mosey about her feelings toward WWF or anything else, for that matter. She was a bit dreamy last night.

I do remember watching wrestling on tv as a kid and she would shame me into turning it off, saying there are better things to do than watch 'crap on tv'. So I imagined that her former self thanked me last night when I guided her away from wrestling and into her quiet little room. I kissed her good night, said I was going to take the trash out and that I'd be right back. She asked why I was taking my purse out to the trash and, since I didn't have a good answer, I laughed and said I didn't know. She seemed to think that was a good enough answer so she let me go without another question. Sleep tight, Mosey.

Side Effects

A recent visit with Henry in tow proved to be predictably nuts.  First, there was the dearth of candy in mom's designated snack tin.  It's the first thing Henry puts his tractor beam on when we get to her room.  So H and I prepare to go on safari to the Walker Gift Shop to stock up on sweet supplies.  We leave mom tucked away doing an incredibly slow moving activity with her fellow friends in dementia.  I wave at her across the room, she gives me a broad smile of recognition, then she gets distracted by some other sensory input and tunnels back into the immediacy that is dementia.

We buy the goods after many dramatic efforts from Henry to get me to buy some crappy toy or other.  We careen back to the unit, eating candy along the way with only a couple side trips: one to the bingo corral and one where Henry spreads eagle on the carpeted hallway just to feel the power of stopping the slow moving foot traffic.  

Bingo is a hard thing to explain to a four year old.  He watched and kept asking what all the old people were doing.  

"B-29"  

"It's a game", I say.

"G-10"

"Why?"

"Some people think it's fun", I try again.

"O-31"

"What are they doing?"

I start walking away, out of answers.  Remarkably, he follows and holds my hand and I shower him with praise for doing so.  

Back in the unit and waiting for lunch.  Mom is planted at the table with her friends and we take a seat.  One of her table mates is a lovely woman, the northern Minnesota version of my mother.  Pleasant, pithy and quick to smile.  She's pretty lucid too which is a rare commodity on the dementia unit.  Mom is pretty quiet in groups now so talking with her is tough at the lunch table.  I bring out some magazines for the ladies to peruse before mealtime and to get them to engage a little.  It's something to talk about when topics are hard to come by.  Mom is happy enough to track on Henry so I ask her table mate, M, if she likes to cook.  M looks at me, her eyes sparkle and she lands this beautiful morsel:

"It irks me that I have so many side effects from the stroke and none of them prevent me from cooking."

I laugh and laugh.  Henry laughs and so does mom though I don't think either of them heard or understood M's witty remark.  But we laugh together anyway and we carry on.

 

Vulnerable Adults

My mom was born on the summer solstice 87 years ago.  

After searching the unit for her I call my sister thinking she's got her out in the world for her birthday.  Indeed, they've been out all day, to church, out for a walk and finally over at her apartment.   My sister's been cooking and my mom's been sitting and snacking and obsessing over piles of paper strewn about the floor.  Mom still likes order even in her scrambled state. 

So I go and mom is there looking out the window and she sees me and my now visible baby bump, smiles and says my name.  And she tells me I'm pregnant and she touches my belly and I tell her it's a boy and we'll call him Joe, named after her.  

My mom has a plate of cubed beets that she's been slowly working on and I settle in near her.  I eat a few beets from her plate and the sisters talk.  Slowly, mom meticulously stabs three cubes on a fork and holds the plate to me.  At first I refuse then I see her look of determination so I thank her and eat the beets.  Another few minutes and mom has loaded up the fork again, holding the plate and admonishing me.  I eat three more beets and smile at the birthday girl, glad that I'm pregnant so she could enjoy my belly too.  She looks at it a lot and puts her gentle old hand on it, slowly moving it around waiting for an elusive kick or nudge that doesn't come.  I think that Baby Joe sits a little more still in her presence, getting his first lessons in patience and compassion from the master herself.  

Then it's time to go, mom ambles down the dark hallway, inches her way down a flight of steps and the two of us settle on a bench outside to wait for my sister to get her car from the garage. And it starts to rain hard and fast and straight down and we look at each other and smile pitiful smiles.  She lifts her jacket up a bit in a symbolic gesture, looking at me and motioning me to duck in out of the rain.  The shelter she's created with her jacket is enough to protect maybe a small child, not me.  So I dash to my car and retrieve a blanket and as I trot back I see her silhouette hunched and patient in the rain and I feel incredibly sad that I can't really protect her from this.  I throw the blanket over our heads and she says that's nice.  Another couple minutes and her chariot has arrived.  Mom inches down another set of steps in the rain, she's in the car and they're off.  I drive home in the downpour, worrying that she'll get pneumonia again.  I arrive home to a child unwilling to let his parents have a conversation about the day's events and the inevitable sadness that comes when I see mom so vulnerable. 

And I realize that I'm a vulnerable adult, too, magnified by the surging hormones.  I'm more sensitive and raw these days and I consider it a byproduct of the pregnancy.  My child throws a toy, a rock, a truck at me.  K and I systematically take toys away from him for his behavior and he screams, settles down and throws another object at me.  K removes him for a couple time-outs, more toy removal, more tantrums and yet we, the parents, hold it together for an hour or so, trying to stay patient, knowing that he's four and selfish and is just trying to control his universe.  A common trait for humans.  I finally just start to cook dinner, never really finishing our conversation.  Then I get very hungry, lay on the couch and start to cry.  Dinner is nowhere near completion.  The boys go out to get me a slice of cheese pizza while I sit in a quiet house and wonder when mom will get sick again, when my boy will learn compassion, whether Baby Joe will get to meet his namesake.

Hello, Mom. You seem so small and far away.

Off the oxygen and forgetting how to walk.  I'm now unable to toilet mom when Henry's around because she's too wobbly and he's too unpredictable.   I started getting her up out of her comfy chair on our last visit and H darted to the door, starting to go out into the zombie-filled unit.  I actually raised my voice to him saying, "Close the door, Henry, right now" and locked my 'mean mommy' eyes on him for emphasis.  He shut the door and waited.  Once H was no longer a flight risk I focused on coaching mom to stand.  She needs a lot of help now.  I count to three, my forearm under her armpit and I lift and she struggles.  First one hand on the walker then I coach her into putting her other hand on the walker.  This can take some time.  She seems nervous about moving so her motions are slow and unsteady.  I can see her hand gripping the chair arm, waiting for direction from an unreliable brain.  After her hands are on the walker grips then I tell her to stand up straight and strong.  I ask her how her legs feel and if she feels confident enough to move and once she says yes, we start our journey around the bed, past the bathroom and out her door.  By the time we are twenty paces down the way, with frequent stops and gentle reminders about putting one foot in front of the other, she is winded and weary.  I get her settled into a chair between her friends and she looks at me like she just climbed a mountain.  I get real close to her, look her in the eyes and ask her how she feels. Mom starts searching for words in that look I've learned to recognize so I ask, "Do you feel pain or do you feel weak?"  She looks right back at me and says quietly, "I feel weak."  I pat her leg and hold her hand and say I'm sorry.  Another couple moments of silence and I tell her that Henry and I have to go now and we'll be back soon.  We drift away, Henry running ahead and me lagging behind, looking back and waving good bye.  Mom waves back and smiles and so do I.

Oops! I nearly killed my mother.

My mom nearly choked to death last week on a teaspoon of water that I gave her through a bendy straw and a tiny plastic cup.  Of course, Henry was there blithely playing with his cache of toys that the staff gives to him every time he visits.  And there I was giving mom a sip of water that she asked for.  She was in bed and upright and slowly sipped and swallowed her first drink of water.  The next drink and her mouth opened in that horrifying way, her tongue out and her face turning beet red.  I struggled to get her sitting even more upright, hit the emergency call button and ran out the door looking for a nurse.  One was right there, I told her what was happening and she sprinted in and I started crying and Henry kept playing.  We thumped on her back, she was beginning to turn ashen and blue, then she took a breath.  The fear and panic left her face within a minute, she had already forgotten  what happened.  She settled back down and Henry commented, "Grandma was choking" without too much concern.  A couple nurses were milling around the room, everyone was trying to remain calm and I just cried as I looked at my mom and held her hand.  When she noticed that I was crying she looked at me like every mother looks at their grieving child, with worry and concern and she leaned in a little to provide some comfort. Which, of course, made me cry some more at the irony of it all.

Oxygen and other Annoying Elements

I'm getting crabby that my mom's room is becoming cluttered with apparatus.  There is a giant, lumbering oxygen tank on wheels, a nebulizer with excessive tubing dominating her dresser, too many towels and mountains of mouth swabs in her bathroom.  A portable oxygen tank has taken over her walker basket   The feng shui is all wrecked now and I am beginning to hate oxygen, portable or otherwise.  

Bright and Beautiful

Almost as an afterthought, I picked some tulips out of my backyard to bring to mom today.  Lots of yellow ones, a few purples and reds.  They sat, without water, on the passenger seat in my car as I delivered some metal project across town.  By the time I got them in a vase with fresh water and on mom's dresser they were getting wilted.  The desert-like conditions at the nursing home will surely do them in by Thursday.

Something struck me about cutting nearly all the tulips out of my yard so that they will die in a vase in a hot room a few miles away.  I looked out my back window this afternoon and saw the shaggy bunches of ugly tulip leaves without their bright flowers to justify their existence.

As mom continues to dwindle and I struggle to deal with it all I found something so peaceful about taking my few treasured tulips and bringing them to her.  

Here mom, I've grown something bright and beautiful just for you.

Walking Feet

Since my last post mom developed pneumonia and an upper respiratory infection.  She's on oxygen now and nearly landed in the hospital.  I met the nurse practitioner at 10a today with Henry in tow.  I brought an enormous amount of snacks, toys, a book or two and beverages because I had no idea what the day would hold. Fortunately mom rallied after 3 days but she's still not great.  

Today, our job was to give her fluids and keep her moving.  Henry was going about 100 miles an hour and mom was -2 mph.  I hadn't felt this schizophrenic in a long while. I watched H tear down the halls, reminding him to use his 'walking feet', a term I despise and only use under duress.  Meanwhile mom was huffing and shuffling and struggling with her oxygen tube and looking pretty weak.  After a couple laps around the unit the three of us settled in the front dining room in view of a beautiful bird cage.  It's large with little finches flitting around and chirping.  It's a favorite spot for us.  I got some juice for mom and Henry and we sat and looked at the birds and chatted peacefully.  I knew it was too good to be true.

The zombies started moving in once they tracked on H.  One kept demanding to find a place to sit even though there were chairs everywhere and the staff kept directing her.  She would get up after 45 seconds then try to sit on the arm of another identical chair and get even angrier.  Another man, gentle enough, kept pushing chairs in and smoothing them out in a slow deliberate fashion.  A baby crazy woman locked in on Henry while she was cradling her own baby doll.  Trouble was brewing.  So, with swift determination I got mom to stand, shaky as she was, got her hands on the walker and she had a supreme moment of centeredness and strength.  Then the baby crazy lady started chasing Henry around a table and the eternally chairless woman started growling at mom.  I saw all the momentum slip away as mom fell back into her chair.  I scooped up my boy and walked away leaving mom beached and wheezing in her chair.  I told the nurse that the zombies started circling like sharks and we had to leave before someone broke a hip.  She smiled and laughed and got mom back to her room within ten minutes for the steamy nebulizer mask and a deep shot of antibiotics in the butt. Henry witnessed it all: the shot, the nebulizer(we all joked that grandma was a dragon), the oxygen tubes and the zombies. And mommy just trying to stay glued together with scotch tape and spit.

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

It's a Luau!

On Sunday mom and I went to a Luau themed brunch at Walker Place, the unsubsidized condos for retired folks adjacent to the health center.  It's an easy way to take mom out to lunch without shoveling her into a car and dealing with the outside world.  Mom loves it, they have real china and cloth napkins and thoughtful servers that know the score with dementia and restaurants. Generally not the best mix.  We met another mother/daughter team and headed down to the Luau.  

As we age, food becomes a problem.  Mom's issue with food is that she loves, loves, loves it and can saddle up to a table and eat for hours.  A meal typically takes 2 hours.  Three meals a day and snacks means she's ingesting for about 7 hours a day.  As a result, she's getting a little rotund.  Mom's lunch date and fellow partner in crime on the dementia unit has a different problem.  K doesn't eat enough so mealtimes are very crucial.  She eats with her one good hand, using her fingers as best she can.  She is generally grumpy about being spoon fed.  Many residents on the unit revert to eating with their hands eventually.  I've noticed mom is starting to more and more these days.  

So the daughters go up to the buffet and choose our meals for our mothers.  I opt for fish, rice, fruit, salad and vegetables for mom.  Small portions.  K's plate is lots a bacon, sausage and other semi-portable high calorie foods.  The ladies commence eating and an hour and a half later there's a mountain of food on the floor, napkins thrown in a corner and mashed up cake that nearly got hurled by the ever demure K.  We have absconded with most of the place settings on the adjacent tables just to keep the peace at our own table.  Mom's coffee is too hot, K's coffee cup is too empty, according to my mom, and she frantically reaches across the table to try to fill that cup.  Then K yells out something to a passerby and my mom comments a little too loudly that some guy is really fat.  All in all, a pretty successful meal.  Crisis management is a good skill to have and we leave with most of our dignity intact.

Another time I took my mom out to brunch with Kurt, his mother and Henry.  I left my mom at the table for a minute as we were all getting ready to go.  When I got back to the table, there's mom drinking breast milk (!) out of Henry's bottle.  I tried to explain calmly (while freaking out on the inside) that bottles are for babies.  Mom simply replied with a gleeful smile, "I'm a baby, too!"

How does one respond to that?

Can you start a fire?

Another resident was on my case when all I wanted to do was sit with Mosey for a bit and chat about the day's events.  She cornered me with her walker in my mom's room and said, "I bet you know how to start a fire...you look like you're up to no good."  

I volleyed back, "Well, I do know how to start a fire but why do you need one?"  

She replied, "Oh, I'm not telling you because you're up to something, I can tell."  

She didn't have her wig on which was a bit of a shock because she's nearly bald, making her look like a short, fat Scrooge.  I muscled my way out of the room and she followed me down the hall, making more accusations.  I figured she wasn't herself without the wig.

Mom is steady as ever, ignoring the chatter, drinking her milk and slowly reading cards from old friends and family.  That's her favorite pastime, to pore over cards and letters, savoring the window to a world that is elusive and shadowy at best.  She thanked me for my help and gave me a kindly smile.

I'm gonna call the cops

That's a phrase no one wants to hear, ever.  Not in your home, not at the mall, not in your car and not in a nursing home.  Needless to say, one of the residents was threatening passers by with this mantra and she managed to get everyone worked up.  This is the same woman that stopped me last week about putting together a hockey team.  I wholeheartedly agreed with the idea and said I would start by looking for a coach.  She thanked me for my enthusiasm and said we could get a team together in no time.  When you live on an astral plane where time doesn't exist she was essentially correct.  In no time at all a team would be formed, we would play some awesome geriatric hockey and then congratulate ourselves on the amazing feat.

So when she was making cop threats this week I was  a little stunned.  I didn't even mention hockey this time and tried not to make eye contact even though I returned an embroidered hankie to her.  I said, "I found your handkerchief."  And she responded, "Of course it's mine, it has my name on it.  Anyone could tell you that."  She glared at me the way the old glare at the young; a withering look saying without saying that I'm a pansy and I'm lazy and I didn't live through the depression and real wars and starvation and cold cold winters where people died if they walked outside which they had to do because they worked, unlike me.

She got her meds early last night so calling the cops got put on the back burner.