When my phone rings and I look down and see it’s the nursing home calling, I hold my breath.  You never know what you’re about to hear.  I appreciate that the first words are always, “Hi this is ____ from the nursing home, and this is not an emergency.”  Wheeeeeeeew.  I can exhale.

The voice on the other line said, “I have to tell you something funny your mom just said.  She had us all laughing.”  Mom was hanging out at the nurse’s station after dinner.

Someone asked her, “Kathy, is it true you used to be a judge?”

“Yes.” 

“Why did you want to be a judge, Kathy?”

“If you met my family you’d understand.”

“What does that mean, Kathy?”

“Trust me.  If you met my family you’d understand.”

I love it.  It’s so true.  My poor mom has been through so much.  And for all that she has put others through, I know she’s been through so much more.  And she has her spunk and resiliency.  That’s what I love most about her.  Her resiliency.

One of the difficulties of this transition is striking some balance between taking care of mom and taking care of myself.  Boundaries are another word I’ve heard for it.  And that makes a lot of sense.  You could easily fall into doing and giving and sacrificing more, more, more…till there is not much more of you to give, or not much of a recognizable you at all.  I watched my aunt struggle with that as she cared for my grandmother.

One of the earliest and most difficult decisions we made was to put mom into assisted living and nursing care.  It was really tough (and the subject for another post.)  We knew we could not adequately care for her.  It was the right decision, and I don’t regret it.

Yet, that’s only one thing off our minds (a big one, I recognize, but still only one.)  There are so many other pieces of caring for mom physically, emotionally, and mentally, that it could still be overwhelming.  And it was for a long time.  I’d wake up at 4AM panicking or worse yet obsessing about something I needed to do.  I’d feel enormous guilt that I was spending time doing something for just me or spending time with friends or family…because that was time I should be spending with mom.  I learned much later that the time I spent focusing on me, or with friends and family, was what helped me be BETTER ABLE to care for mom.

So I put some structure around it.

I can be a workaholic because I love what I do.  And it can be a great escape because I know how to do my job.  I don’t always know how to help my mom.  So rule #1 is to be more self-aware of my tendencies to dive into projects I know how to do in an effort to avoid spending time figuring out what I don’t know how to do.

That was helpful.  But I still felt guilty because there is a lot I don’t know how to do.  Rule #2 is to talk openly and honestly about my limitations, my concerns, my fears, and my needs.  Something amazing happened when I started to do this…people helped me.  They gave me advice.  They connected me with people they knew who could help me.  They pointed me to resources on the web and elsewhere.  They listened.  They offered me things I never even thought to ask for.  They found ways to support me.

And all of this was helpful but it still didn’t stop me from waking up at 4AM worrying.  These two rules didn’t provide guidance for how or what I should be doing.  That, I have realized is a personal decision.  Many people will have suggestions.  I have to decide what to do, how to do it, when to do it, and when not to do it.

My rule #3 is commit to one hour a day and one half-day per week to spend completely devoted to mom.  Sometimes it is more.  I try hard to never make it less.  And in this time I think about her, I worry about her, I talk to her on the phone, I shop for her, I pay her bills, I visit her, I sing songs with her, I play games with her, I try to understand her Medicare statements, I go to doctor’s appointments.  I decide what I need to do to help her right now, I do it, then I focus on the other things that need to be taken care of in my life.  And when I wake up at 4AM, I tell myself, this isn’t part of the hour, I make a note of what’s on my mind so I can worry about it later, and I go back to bed.

Rule #4 is forgive yourself when you break one of the other rules.  It happens.  Enough said.

I love this picture.  Back in September, my brother and sister-in-law took my mom to get milkshakes and go paddle boating.  By all accounts this would sound like a disastrous idea, but they had a blast.

Yet another example of the unpredictability of it all…

What you think will work, can go all wrong…

What you avoid doing because you’re worried it won’t work, can surprise you…

I have been so tired the past couple of weeks. I’m sleeping better and through the night (mad props to the Melatonin supplements I’ve tried) but I’m going to bed earlier, getting up earlier, and just generally feeling like my schedule is off.

It reminds me of the summer between my junior and senior year in college. My junior year I was struggling with Organic Chemistry and really heading high speed towards failing it. Rather than risk it (actually there was no risk, I was going to fail this course), I withdrew, which meant I had to take it in summer school.

This totally screwed my summer plans. I was going to work as a 4-H camp counselor for the third year in a row, hang out with all my friends driving around West Virginia, working during the week, and partying in Morgantown on the weekends.

Instead, I lived at home in Charleston and got a job as an orderly in a hospital working the overnight shift! It was AWFUL. But the pay was good and I got a nice salary differential for working nights.

Between calls to roll patients over, move patients from room to room, lift heavy things, and clean up some of the more bizarre things I’ve ever seen, I would sneak off to stairwells or storage closets to memorize chemical reaction notecards.

I would come off of a 12 hour shift and have just enough time to rush home, shower, and change clothes before my ride picked me up to drive the hour from my house in Charleston to my class in Huntington. My friend Jodie drove to class so I could sleep, and I’d pitch in and drive home…sometimes.

And every day that summer, my mom would get up when she heard me get home from my shift, go down to the kitchen, and make muffins. Each morning she made some kind of homemade muffins. I couldn’t understand why she didn’t just make them the night before and sleep in. Now I realize it was probably because she knew how much I was struggling that summer with work and class and this was something she could do to support me. It was her time to check in, ask me about work, ask me about class, and make sure Jodie and I got out of there on time every day and didn’t skip breakfast. (I have always hated breakfast).

I remember her standing at the door, waiting for the muffin hand off, so I could run out the door and get on the road. I don’t know about Jodie, but to this day, muffins make me think of that summer and my mom waking up every day and never complaining about it.

(AND to this day, I eat anything except muffins. Carbs aside, a whole summer of muffins, people, is a LOT of muffins.)

I called my mom to talk before bedtime. I was asking her how the day was…”Fine.” I asked her if she ate all her dinner… “Yes.” I asked her if she was wearing her night time clothes or her daytime clothes… “Night time clothes.”

And then she said, “I’m loving it.” I said, “Mom, what are you loving?” She said, “Matt, I’m loving it.” I said, “I know mom, but what are you loving?” “I’m loving it, Matt. I’m loving it.”

Long pause…… “The McRib is back. I’m loving it. The McRib is back. I’m loving it.”

So, I was having a conversation with mom and she was reading someone’s McDonald’s cup that was left on the counter. I’m loving it.

One of the things that’s happened in the last year is that mom has increasingly been more confused about the time of day.  When I call her and ask what she’s doing at 7PM, she’ll be on her way to breakfast.  Or when I call in the middle of the afternoon she’ll be waiting for her 8PM meds.  I know that is part of the progression of the disease.  It also has to be in part because she sleeps bizarre hours.  Especially since we moved her to a new living facility in August, she’s sometimes sleeping huge parts of the day and up all night.

So it’s no surprise that after about 2 or 3 hours of me dragging her all around town running errands with me, she’s wiped out!  Here’s a great video from this weekend.  She decided she wanted a nap, then at the last minute got up to close the closet curtain and got sidetracked.  But I got her back and focused on nap time…

I took mom to see a new neurologist on Monday.  It was the beginning of a big week of thinking realistically about the future and looking honestly at the past.  First things first, I was so happy with the new neurology practice.  Everyone was so pleasant, AND patient as I tried to get mom to sit still while I filled out the paperwork.  I kept giving her things to count to occupy her long enough for me to think about the patient history questions:
“Mom, count the number of magazines.
“Now count the number of chairs.
“Now count the ceiling tiles.”

After that I told her the doctor was going to ask her some questions and so we practiced her birthday, her name, where she was born.  Then we counted some more.  THEN I had the brilliant idea to pull out addition flash cards on my iPhone and we did math drills for 15 minutes.  Mom and I could kick some First Grade ass I’m telling you.

The new doctor was as patient and caring as the front office staff.  She took the time to sit with me and ask lots of patient history questions.  Then she did several memory tests for cognition, speech, reading, writing, telling time, and counting.  Mom aced counting.  🙂  The other tests, well, hit and miss.  Reading, writing and simple conversation were good.  But in reality, conversations now with mom include a lot of parroting of what you say:

“Mom, did you eat breakfast?”
“Yes, Matt, I ate breakfast.”

“Mom, do you have to go to the bathroom.”
“Yes, Matt, I have to go to the bathroom.”

“Mom, are you a Russian spy.”
“Yes, Matt, I am a Russian spy.”

And telling time was tough.  The doctor asked her to draw a clock and she drew a big circle, and started numbering it.  She got to 12 by the time she was halfway around the circle so after a brief pause she just kept going to 26.  Then the doctor asked her to draw “Ten minutes after 11” on the clock.  She put a dot in the middle and drew a long line pointing to 11.  Now, with 11 currently located where 5 should be, even someone with all their faculties would find this an SAT worthy logic problem.  She stared at it so long I though she was just silently giving up.  Then she wrote in words along the one clock hand she’d drawn, “Ten minutes after eleven.”  Done, and handed the clipboard back to the doctor.

The doctor and I chatted about what she is and isn’t able to do now.  Then she gave me her diagnosis.  Mom’s dementia had progressed to the moderate stage, and it was likely Alzheimer’s.  Moderate stage means the middle of the disease.  Cognition is shrinking.  Her vocabulary is shrinking.  She’s forgetting people–though luckily not me or my brother yet.  She’s forgetting things–like which car is mine in the parking lot, so you can’t take your eye off of her or a stranger will get a surprise passenger.

It’s a funny thing about this disease.  I know my mom isn’t going to get better, but I try not to see that she is getting worse.  I think of reasons why she would be confused…well, I did just get a new car…well, she isn’t sleeping well anymore…well, it’s a full moon  (that’s my personal favorite.)   But really she’s getting worse.  Slowly, she’s forgetting more, she can’t do things she used to do, and she’s getting sicker.

So, I’ve been thinking about this all week.  We are in a new stage, a really urgent stage, because so much of my mom is already gone.  Certainly the person I knew isn’t there anymore.  And sometimes I’m scared I will forget some of that wonderful person that used to be there.  Enter blog purpose number one…when the funny, embarrassing, sweet, scary, ridiculous memories of my mom come into my head, write them down and remember them.

And even though that person is gone, there is still someone really wonderful still here.  My mom is still so sweet and funny and silly and passionate and still so full of life.  Enter blog purpose two…document the person she is and chronicle the ups and downs as we ride this middle stage out.

Here we go…

Continue reading →