So first writing, now reading. It’s really amazing how differently mom is doing after one month of having a momsitter three times per week.

The typical menu of activities includes walking, reading, and puzzles. They also do whatever activity may be happening in the activity room: exercise, crafts, BINGO. It’s no surprise to anyone who reads this blog that anything involving music and especially singing is a hit.

And one of the best parts of what’s happening with the momsitter is what’s happening when the momsitter is not around. Mom is sitting independently and reading.

When I went on Sunday morning she was sitting and reading a Maya Angelou book we’d given her a decade ago for Mother’s Day and she’d always kept in her bedroom on her nightstand. The nurse told me she’d been sitting and reading it for almost two hours that day, every word and every page. By the time I get there she is on the last few pages. Who knows what of it she comprehends or what of it seems familiar having read it several times. I’m so happy she remembers how to read and has the patience and attention to sit and read for now.

She will sit and read the captions in a photography book from start to finish. She’s even been reading the recipes from cookbooks; reading the very detailed description of ingredients and the descriptions of techniques. My mom always did love to read and try cooking new things.

I think we will add a second momsitter for two additional days per week, so someone will be there five days per week for three hours each day. Three hours of time where someone is singularly focused on spending time with mom and doing things she loves and will stimulate her.

I have to laugh at the ongoing discussions we have about the myriad of meds she’s on. We are preoccupied with the how to tweak the meds to get her to behave differently. It’s an impossible riddle…raise this med but lower this med. Observe any behavioral results? None? Then change the med, or the dosage, or both.

In the end what’s caused her to behave differently in the shortest amount of time has been having another person to spend time with her, learn her, love her, and help her as needed.

There is a lesson in there about all the best efforts to control behavior by meds… it isn’t fully successful without care, respect, generosity, acceptance, patience, and love.

I’d say this momsitter experiment is a success.

I don’t like to let people help me with the hard stuff. I get that from my mom and from my dad. We ask for help with the small tasks. For the hard stuff, we ask for help only after we’ve struggled silently with it, and it has consumed our minds or upset our bodies. I share my mom’s “nervous stomach.” We both would worry silently until it manifested into sharp, doubling over stomachaches. I share my dad’s chronic 4am wake up calls, where our brains turn on and won’t shut off. Usually it’s an endless doomsday loop of things we can’t possibly do anything about while laying on our backs in bed in the middle of the night, yet we are unable to stop the mental movie from playing.

I’m trying to get better.

There is a woman named Barb who works at the home where my mom lives. Her job is to take the residents to their medical and dental appointments. She drives a big, white, oversized, wheelchair-accessible van with the name of the home proudly displayed across the side. Barb is an explosion of energy. She moves patients in the deep heat of mid-summer, and she transports patients in the slushy, snowy days of mid-winter. All of those residents with their different ailments, different needs, different abilities, Barb knows them all and she accommodates them. It’s her job and she is very good at it.

I have it in my head that I need to take my mom to all her appointments. It’s only been in the last year I have been better about working with my brother and sister-in-law to have a plan for the three of us to take mom to all her appointments. Still I’ll agonize over an upcoming doctor’s appointment, trying to rework and rework my schedule to be able to take her. When I can’t, I call my brother and, less and less reluctantly these days, ask him for help. When neither of us can, I call Barb, and apologetically ask for her help. From the other end of the phone, Barb’s cheerfulness is disarming. Of course she will! And she usually has a little story to tell me about my mom before she hangs up.

I couldn’t make a doctor’s appointment this week and Barb took mom. Today in the mail, was the following note from one of the people who works in the front office of the home. I assume Barb showed her this when she returned from mom’s appointment. And I was reminded that sometimes when you ask for help, something happens that is bigger than you could have accomplished on your own.

I need to ask for help with the big, important stuff. I’m working on it.

When I got the notification to renew my blog for another year, I couldn’t believe a year had gone by so quickly. I started this blog as a concrete space to remember things that were slipping away…my memories of my mom as she was, and the honest ups and downs of what is happening week to week. It began more than anything as a therapy for me. A place to organize my ideas and feelings and make that into something.

And it’s grown in bits to be much more. It’s a window into our lives for friends and family to be a part. It’s connected me to kindred spirits I’ve never met, but have known a similar struggle. I’ve heard from so many people who never knew my mom, but through the blog she has become someone real to them; someone that reminds them of a person they loved and cared about.

So I’ve signed on for another year. And though this started as the story of our journey, one of the most amazing things for me is that it’s become bigger than the story of us…it’s connected me to the story of all of us. The story of how we all love, and how we struggle to hold on to the wonderful for as long as we can.

Thank you for reading!

I thought my mom had forgotten how to write. I still have my mom’s handwriting in my brain. It’s big and loopy cursive writing. I remember how much I used to like it as a kid. Much better than my dad’s handwriting, which no one could ever read, including him. If I try, I can imitate it, that’s how well I remember it. And on more than one occasion, when I’m filling out a medical form or a legal form for her, I will notice I unconsciously start writing like her.

It’s been years, literally, since I have seen her sit down to write anything. The woman who made our kitchen table her personal office and nucleus of all list making, hadn’t produced anything in my presence but shaky signatures for the last few years.

Today when I went to see her and I opened the dresser drawer where we keep nail polish, sunglasses and hair scrunchies, there were two cards:

I recognized immediately my mom’s handwriting, the same way she’d written our names on birthday cards, school permissions slips, envelopes mailed overseas. The momsitter worked with her to write us cards, which she left in the drawer she’d know we’d look in.

And my favorite part for me , the one-of-kind way she always signed, “Love, Mom,” in big, loopy cursive handwriting is still there. She hasn’t yet forgotten how to write, or how to surprise us.

Today was the first day with the new momsitting service.  Happy to report it was a big success.  The momsitter arrived at 10:30, got mom out of bed and didn’t let her get back in bed till 1:30.  They walked laps inside and outside.  There was a sing-a-long that was attended.  They worked some puzzles.  The momsitter learned the eating routine and lunch went great.  Hopefully Wednesday and Friday go just as well or better.

Joey and Katie are fostering a rescued beagle named Beauregard. We always had a dog growing up. First a weimaraner named Heidi, then a chocolate lab named Maggie. I remember my mom’s millions of lectures about having a family dog means everyone in the family is responsible for taking the dog for a walk, cleaning up dog poop from the yard, feeding the dog, and so on and so on. I wondered how mom would respond to having Beau around. As you can see from the video, it was a great meeting. The point where we try to all cram into the car at the end of the video is maybe my favorite video moment to date.

You know those ideas, and subsequent decisions, that are so simple that when you have them you think, “Why in the hell did I not think of this a long time ago? It would have made my life so much easier!” We had one of those recently. Get my mom a “momsitter.”

When we moved my mom last August to this new facility, she was notorious for being up and about all the time. She would wander the halls at 3AM, reading bulletin boards and eating late night pizza with the nurses on nightshift. Whenever we’d go to visit she was never in her room. We’d find her sitting in the lounge or the cafeteria. Other times we’d have to wander around till we found her wandering around. She was active.

Now when we visit, she is usually in her bed. She’s laying in bed watching tv or just staring out the door at people walking by. Once we get there, she gets up, we brush hair and put it in a ponytail, put our shoes on, and head out for a walk or a car ride or something. In last 3 to 6 months mom has moved from someone proactive to someone reactive, probably in part due to the disease and in part the medication used to treat it. As a result, she’s getting fat, she’s getting less mentally elastic, and slipping faster into inactivity than she needs to be. This whole process should be more of a fight. Not something you lay in bed waiting for.

Enter the momsitter. The facility mom is in has a huge team of caregivers and volunteers that do a fantastic job taking care of her, worrying about her, and loving her. Still the fact remains that they can’t give her the amount of one-on-one attention that she needs to stay active and focused right now. There’s too many residents they have to attend to. And the reality is, if you put her in a chair with a magazine and a puzzle, the minute you walk away, that puzzle better be able to work itself because mom is taking a nap. Stay with her, she’ll do the puzzle till it’s done, or until she decides she’s done with it and gets up and walks off, either way, a win.

As with most really simple ideas, the idea is the first step. The next step is usually to get completely demoralized by how complicated it will be to make it happen. And the third step is to try to find some source of motivation to power through.

I called my employee assistance program through my work and they acted as a research and referral service, coming back with a list of potential companies who provide companion care. My brother did the initial screening calls based on a list of questions we developed. I did the final interview with the company we selected.

So starting Monday, my mom is getting a momsitter three days a week for three hours a day. On the list of things to do…take walks, paint her fingernails, help her fold clothes and organize, play games, sing songs, work puzzles, hang out outside on nice days. How great is that? And why didn’t I think of this sooner???

I have my mom’s smile. It’s one of the best gifts she ever gave me. It’s this big toothy smile that makes two big parenthesis framing it on either side of our mouth. It’s a smile that makes our high cheeks push up, our eyes get squinty, and smile wrinkles fan out around our bottom eye lids. It’s a smile that says everything you need to know about how we are feeling.

My mom got her perfect smile naturally. Straight teeth, upper and lower. I got thousands of dollars sunk into my grille to straighten and even it out. My mom was always big on teeth. She supervised many of my teeth brushing sessions growing up. And if you tried to cheat on brushing your teeth you got a standard lecture from my mom about how you only get one set of teeth and you have to make them last a lifetime. And I guess it worked. I’m pretty obsessive about my teeth.

And now smiling is one of those things we struggle with, because my mom is starting to loose it. That is, when we tell her to smile in pictures, sometimes it happens sometimes it doesn’t. She says, “I am smiling,” even though what you get is a neutral expression. I guess it makes sense knowing what she’s going through. Smiling is probably a very complicated action, requiring lots of muscles to do what they need to do all at the same time. So when that action is voluntary, it’s hard.

And yet, the involuntary smiles still happen. When a song she likes comes on the radio, you’re likely to get a big grin. Sometimes when she looks across the room and sees my brother or me sitting in a chair she smiles a big smile. She doesn’t will it. It’s that involuntary smile that she passed on to me that just happens because you can’t keep all that happiness inside. It’s my mom’s smile that happens because it can’t do anything but burst out all over her face. And she gave that smile to me. And after she can’t do it any more, I’ll still smile her smile, and see her happiness in mine.