I don’t know what it’s like to take care of a baby, but I imagine one of the joys of it is that it’s not as complicated as taking care of a teenager.  I mean it’s hard to necessarily know what a baby wants or needs because they can’t verbalize it.  Though, at the same time, their needs are very distilled.  Eat, drink, laugh, cry, poop, pee, sleep, get sick, get better.  With a teenager, the needs increase exponentially.

That’s what was on my mind Sunday when I spent the day with mom.  As she get sicker, there is an easiness to it because her needs are very distilled.  Eat, drink, laugh, sing, poop, pee, sleep, get sick, manage being sick.  And there is some comfort in that.  She is less verbal.  She parrots more than she initiates so it’s difficult to really know what’s wrong or what she’s thinking.  There is a relationship complexity that was lost and mourned, and it has been replaced with simplicity.  We do less, but we need less.  

Well, we gave it the old college try but once again the roommate situation hasn’t worked out.  I was optimistic that this time it might work.  There were hopeful signs that this could be the right time.  As the disease has progressed this last year, mom is slower and calmer in some ways.  She has fewer manic episodes.  And in general she talks less.  Well, that may not be true, she talks differently.  It’s true she doesn’t really initiate much conversation anymore, but she is still a talker.  And that was in the end, the demise of this current roommate experiment.

It doesn’t take long with mom to realize she talks to herself all day long.  She gives herself simple instructions out loud, “Get out of bed, Kathy,” “Turn off the lights, Kathy,” or “Let’s go to the cafeteria, Kathy.”  And she also hangs on one word at times, repeating it 10, 20, or 50 times if someone doesn’t intervene to tell her to calm down and stop repeating.  “Let’s go for a ride in the car, Kathy.  Ride.  Ride.  Ride.  Ride.  Ride.  Ride……”

Anyone can see how day in and day out of this could blisteringly annoy you.  And couple with it that my mom’s volume button seems to have broken on high, and it’s really bordering on maddening.  

I got a call from the nursing home the other day that they were moving the roommate into another room.  Evidently the nurse was two rooms down and could hear my mom and her roommate yelling at each other.  Mom was doing her instruct, repeat, instruct, repeat cycle and her roommate was screaming at her to shut up!  Which only made my mom talk louder: instruct, repeat, instruct, repeat at full volume.  The roommate tension was starting to affect others on her hall.  

The nurses and staff at the home are very sympathetic.  They realize that this is just the way her version of this disease manifests itself.  And for every Alzheimer’s and dementia patient on my mom’s wing, there is a different presentation of the disease, different symptoms, different behaviors, different treatments.  The only thing that doesn’t change is the enormous patience and devotion of the caregivers who work tirelessly to make an unfixable situation livable.  

Her doctor made some adjustments to one of her meds to see if there is an impact.  We will see in a few days.  

I recently went through a notebook from grad school and found the following scribbling.  I forgot I wrote it down.  The date has been torn and hard to read, but I know the month and the year.  I think about this memory about once a week.  It sometimes makes me sad.  It sometimes makes me feel overwhelmed.  However, it always makes me feel proud of us that my Mom is somewhere she is safe, where they like her, where she receives the medical attention she needs, and somewhere that gives us peace of mind.  We’ve come so far.

May 2008

Mom is standing in the kitchen; hands on the counter, head down, staring into the kitchen sink. She didn’t move or say anything when I walked in the front door and up the hallway.  She just stood there like she was lost in deep thought.  She didn’t move when I stood in the doorway and gently said her name.

“Mom,” I said it softly, again.  She kept staring into the kitchen sink.

“Hey, Mom, I’ve come to see you.”  I remember trying to make sure I kept my voice level, calm, quiet, and soft.

She turned her head in my direction very slowly.  The look on her face is burned in my memory.  She looked so pitiful. Her face looked so sunken, so sad, so broken, ashamed, and lost.

We just stared at each other like we were looking for the persons we remembered each other to be in our memories.

When I close my eyes and think of my mother she is early forties, dark curly hair, full face, smiling, eyes bright, and healthy.  I imagine she closes her eyes and I am child again, maybe a teenager.

We are not those people anymore.

She has aged decades due to her illness.  Living the life of a self-imposed prisoner of that house, watching it fall down around her.  Watching helplessly as it just wastes away, unable to make it change, unable to make herself change.

I am an old thirty.  I am a bit lost.  I don’t know how to care for a mentally ill parent.  I am trying to figure it out, and make it up as I go along.  I develop a routine.  Work with brother to make a plan.  Make a contingency plan.  Make a contingency plan for the contingency plan.  Do your best.  Lay awake in your bed worrying until the early hours of the morning.  Get up out of bed and do it all over again.  It has made me an old thirty.

We stare at each other across the kitchen.  Some of the tile on the floor between us is cracked.  Some had chipped and come up.  There is a three foot oval hole in the ceiling plaster above us.  I don’t know why.  I’m not sure if the stove works.  Two of the burners are gone.  She just leans against the counter.

We stare at each other.  Maybe we are both wondering how we got here.  How did life turn out to be like this?  Where did we take the wrong turn?

She looks so broken, so pitiful.  The sick woman who was my Mom for so long just stands there breathing in the dusty air.

My mother got tears in her eyes, and then she finally spoke.  Her voice was like a raspy whisper. “I don’t want to live like this, Joey.  I….I don’t know how to make this right.”

She turned her head back down.  She stared at the sink again.  My heart broke.  I cried, silently.

The next day she would be admitted into a mental illness ward of a hospital.  It would be her second time in four months.  She would be discharged 30 days later.  I would drive her from the hospital to an assisted living facility.  As per instructions from the doctor at the hospital we would not stop at her home on the way.    Two weeks later I would move to Charleston for the summer and begin cleaning the house so repairs could begin.

It’s been almost two months and I now realize I saw my Mom in her house, in the home I grew up, for the last time.  She won’t be allowed to go back there again.  I am so sad for her, for all of us.

The Fourth of July is my least favorite holiday, followed by Memorial Day and Veteren’s Day. Don’t get me wrong…I’m a very proud American. I also live in DC and those three holidays are the three holidays where we have an influx of tourists clogging up the metro and coming to a full stop while driving because they are lost. Not to mention the fourth of July is HOT in DC. Always over 95 degrees and always humid.

And my mom loved the Fourth of July. When we were younger we’d always go on a picnic with other family friends. When we were older my mom would pop popcorn, drag chairs to the driveway and have the neighbors over to watch the fireworks.

And no matter where she celebrated the Fourth, my mom would call me late in the night to wish me a Happy Independence Day and let me know she’d watched the fireworks over the US Capitol on the Capitol Fourth broadcast on PBS. She’d want to know where I was during the fireworks and how much fun I had.

Wherever you are, whatever fireworks you’re watching, Happy Independence Day from my mom Kathy and me!

Mom turned 63 last week! I can’t believe it. My brother and I celebrated with her in simple style…bouquet of flowers, rocking chairs, singing, fingernail painting, and lots of laughing.

Mom was always great with birthdays. When we were younger she cooked whatever we wanted for dinner and when we were older, we’d go out to dinner wherever we wanted. Mom would also wake up in the morning, blow up a dozen balloons, tie them together with ribbon, curl the ribbon with a pair of scissors and hang the bouquet on the porch light by our front steps. She wanted everyone that passed by the house to know that someone inside was having a birthday.

Three of my mom’s birthdays stand out in my mind. I remember her 40th. We had a surprise party for her. My job in the surprise was to decorate the house. I made signs, put up banners, and went through a hundred old pictures to find a collection to hang on the front door. The picture below of my mom walking through the front door to the surprise is an image I can see with my eyes closed. The other memorable part was her “Over the Hill” birthday cake which had black flowers on it. Everyone’s mouth turned some disgusting purple color so when we posed for a group picture it was full of purple tongues.

I remember her 50th. My mom and brother came to visit me in the Peace Corps in Samoa. She was so excited. It was her first trip out of the country. We took the ferry to the big island. We stayed in beach fales (=thatched huts). I snapped the first picture while she was putting on her makeup and staring at the ocean. She wanted a dozen pictures taken of her in that hut. She loved sleeping on the beach. That’s something we both could agree on. We drove to Falealupo-tai, the last place the sun would set before crossing the international dateline (before the moved the dateline a couple of years ago.) We took the second picture as the sun was setting on her 50th.

The last birthday that stands out is her 60th. By this time she had been in and out of hospitals trying to make an accurate diagnosis for what was going on. The only thing we knew at that point was that something was seriously wrong and getting worse. We had moved her into dependent care because she wasn’t eating or taking her meds. My brother and his wife were living in Africa and I was driving 3 1/2 hours each way, every other weekend to see her. Everyone was struggling. And in the chaos that was those couple of years, my dear friend Jodie and her family hosted an impromptu 60th birthday party for us. We crashed their Sunday family lunch and Jodie had made a birthday cake. We ate, laughed and sat on the porch swing. It was a perfect summer day.

We’ve had our share of big family birthdays, with either a huge trip or an expensive present to mark the day. And what it all comes back to for me is what my mom taught me about birthdays…simple is best. It’s about spending time with someone you love, eating food you love, and maybe a few balloons to let everyone who passes by know you’re having a special day.

My mom got a roommate this week. Now this is huge news because since we moved my mom into dependent care she has not been “roommate compatible.” Some of it has been a result of her helpful disposition, some of it her aggression, and no doubt large parts of it her illness.

She had one roommate that she insisted on helping in and out of bed, only to end up dropping her on the floor one day. She had another roommate whose family would bring her candy and sweets and my mom would take them and eat them. She had another roommate that was really loud. She would snore loudly when she slept and moan even louder when she was awake. They caught my mom shoving suckers in her mouth one day in an effort to get her to shut up.

So when we were looking for a new place to move mom in August, my brother and I were scared they would want to move her into a room with someone else, things would go as they had in the past. There would be a big incident, and unlike the old place, new place would be less tolerant and would tell us she couldn’t stay there. So we decided we wouldn’t say anything about her rocky roommate history and hope for the best. We really wanted this new place to work out, because it was perfect for mom and close to us, and well, we really didn’t have any other options.

They told us they had the perfect arrangement for mom. She would be sharing a room with Lynne, another resident with early onset Alzheimer’s, who loved to walk the halls and go to activities. They were sure this was going to be a good fit. My brother and I smiled and nodded enthusiastically as they explained the arrangement, then got in the car and rolled our eyes and said this is a disaster in the making.

It lasted four days. Four long, nail-biting days. My brother and I were waiting for the call, and when it came, they were so nice about it. They said mom had gotten up in the middle of the night, walked over to Lynne’s bed, pulled all the blankets and sheets off and said, “You’re going to have to leave now!” 🙂 They moved Lynne next door and mom has been in her own room for the last year and everyone has been fine.

So this week they moved a new roommate in. Mom has become so much more mellow since August. Her mood swings and her aggressive side aren’t there anymore. So hopefully it’s the right time for a roommate. We will wait and see. So far, so good.