Here’s our Thanksgiving message we recorded for my brother Joey while he’s enjoying the holiday with his inlaws.  Happy Thanksgiving to Joey and to everyone from me and my copilot.

I had a coordinated care meeting for mom today, the first one I’ve had since we moved her to the new rehab and nursing facility in August. It seems she is settling in fine. She’s her usual social self when she wants to be, and she goes to her room, shuts the door and watches tv or sleeps when she wants to. What more can you ask for?

She still likes to go in to other people’s rooms and steal their drinks, or walk around the cafeteria and grab a milk or juice that an unsuspecting resident leaves unattended. They are going to try getting her a water bottle that she can wear and have with her at all times. Something that straps to her belt or something. I didn’t quite understand the mechanics of it, but they are hoping that helps.  My prediction is that there is going to be an upcoming post about this water bottle not working.

They wanted to hear what my concerns were.  I had the normal ones…how is she adjusting to the new med; is she eating; is she sleeping?  And then I had what is probably a really strange concern…I was worried that I wasn’t supplying her with enough clothes. Here’s why, when I went the last two weekends there were lots of second-hand clothes in her closet. My first thought was she’s gone and stolen some poor woman’s floral mumu dress and some man’s firetruck red blazer and put them in her closet. (It would not be the first time.) Then I looked at the clothes, and there was an iron-on label with her name on them. The only thing I could figure out is that the staff thought mom didn’t have enough clothes and instead of telling me, they were giving her charity clothes. Now, I am not above taking help when I need it…I may not ask for it enough, but that’s another story…but buying her clothes is something I can do, and quite frankly is one of the more enjoyable parts of this journey. It’s something concrete that I know I can do that helps!  And when you are going through this, you want all the hands-on, easy fix things you can get.  Makes you feel like you have some power over this thing you have no power over at all.

It turns out they weren’t charity clothes, well not in the sense I was thinking. People donate lots of clothes to nursing homes. It makes sense, I just never thought of it.  Anyway, my mom, one of the biggest busy bodies I know, likes to insert herself into the big reveals when the staff is going through the donated clothes, and she likes to call dibs on the stuff she wants. Hence, the mysterious dress and red men’s blazer. They were donated clothes that as the staff was pulling them out of the boxes to go to the laundry, mom was laying claim to…presumably when she should have been at exercise class or bingo.

So, mom gets to grab the clothes before anyone sees them.  The staff gets a no cost way of making her happy.  And I still get to go on my Old Navy shopping sprees. Everybody is a winner.

In this really helpful post, mom and I discuss the upcoming Thanksgiving holiday.

Unprompted, mom told me that Thanksgiving was Thursday…which is huge for someone who confuses dinner and breakfast on a regular basis.  I asked her how she knew it was this Thursday.  She said, “The people around here told me it is Thursday.  The people around here talk a lot.  A lot.”

So I decided to interview mom about Thanksgiving.  In addition to a helpful reminder that it is this Thursday, she also discusses how to make an apple pie, and what hot drink best accompanies it.

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.