I have a personal rule not to blog when I am mad. I’m probably missing out on some juicy opportunities to pick up readership but personally don’t like reading angry rants so try to steer clear.
This time though … if I wait for the anger to go away I may never blog again.
Last Saturday goes down as one of the most exhilarating days of my life … it’s also a day that provoked the most seething anger I can remember feeling toward a complete stranger.
In February my mom was diagnosed with Lewy Body Dementia. For over a year, we knew (and she knew) that something was very much wrong. Her doctors seemed caught off guard and insisted that it wasn’t Alzheimers or dementia. They were wrong.
My husband and I made the decision to move back “home” so that we can be closely involved with Mom during this part of her journey on this side of eternity. After months of 600 hundred mile round trips two or three weekends a month, we’re transplanted into a small Eastern Washington town … and are loving it in spite of the painful reasons connected to our move.
Lewy Body is tough. Brutal. It’s a rough, aggressive dementia attributed to proteins that form on the brain. There is an overlap with Parkinson-like symptoms and many Parkinson patients get Lewy Body. Effects can include hallucinations, paranoia, dreams that seem real, the brain’s inability to tell the body how to regulate blood pressure and hunger, etc. Most websites say that it is the least researched of the dementias, the second most diagnosed, and yet the most likely dementia to be mis-diagnosed at first. (Yes … I agree … that’s confusing.)
Talking to others who have walked the journey of Lewy Body with a family member is usually nothing but discouraging. A few of the support groups I’ve checked into on-line leave me feeling like my guts have been stomped on by a herd of rhinos. People are so negative about it.
I’ve decided not to be destroyed by this, though.
I hate that Mom has to go down this road, but I am so, so thankful that this has brought us home and that we can be near by. I learn something new every day and can confidently say that beginning with my husband’s health crisis three years ago, my family has never been closer.
It’s not a Pollyanna road, though. I tear up almost every time I sit with her; there’s always a moment or twenty of feeling helpless.
Other days I marvel at the ways in which we as a family have learned to read the cycles her brain seems to go through and that we have come up with clever ways to meet her needs … at least sometimes.
This brings me to last Saturday.
For the last several months Mom has experienced cycles of extreme “sleepiness” in which she says very little to us, and we call it a good day when we’ve gotten her to eat all of her meals and take her pills.
Then there are the awake days. Awake days come with a lot of confusion. It’s as if she has been dreaming during all of the “sleepy” days and now she’s not sure for awhile what is real and what was maybe a dream. However, even while we struggle to make the most of the these days, I marvel at how amazing they are. Awake days,” as imperfect as they are, make all of this worth it and help us have patience with the ups and downs. They help me realize that it’s simply not her time yet.
Saturday was an “awake day”. I thought I saw it coming on Friday, so had plans to bring one of her closest friends to see her. But first, I had promised the friend that I would take her shopping to an area Walmart so that she could prepare for an upcoming trip.
Our friend is nearly blind and can barely walk. It has been extremely hard for her partner to transport her in their car, so I was glad that Mike and I could help. Admittedly, I was a little nervous (terrified is a more honest word) that she would get hurt on my watch.
But, a very cheerful and upbeat woman, she was more concerned about my mom than herself … so we persisted
We pulled into the store parking lot and wouldn’t you know, my phone pinged with a message. Mom. She WAS “awake” and had tried to call. All I could hear was, “She’s not there,” and the word “home”.
I couldn’t get back through to the nursing center so focused on getting our friend into the store. It was then that I noticed her hair standing up in the back … an extreme case of bed head that had been overlooked by both her and me in the rush to get a walker and everything else needed into the car. And her shirt was a bit wrinkled and tattered in one spot.
If Mom had been there, she would have quipped something witty and helped her dear friend of forty years smooth out the locks and pat down the wrinkles so that she would not be embarrassed in public. But … by the time I saw it, we were already in public. And, Dear Friend was struggling to walk more than she thought she would.
So I let the appearance go. Her determination made her radiate with victory. She was a champion. Surely everyone would notice the glow of victory and not the unkempt appearance.
We couldn’t have picked a worse day to come to Walmart. Especially this Walmart. It is in a college town and unbeknownst of us, this was the weekend before sorority rush.
Oh well, the more people to cheer on our brave friend for foraging her way through the maze. Right? After all, this is the age of diversity and acceptance. The age of women championing women. Everyone looks to the heart and not the outside … right?
Other shoppers had no idea that Dear Friend could hardly see them by the way she bravely, although slowly, maneuvered the freeway-like aisles.
She insisted that I walk ahead of her and she would be able to see my shirt and follow. We had made it half way across the store to retrieve our last needed item, when IT happened.
A very well dressed woman my age, with her beautiful, likely-sorority-material daughter hovered around us. The woman suddenly veered a little closer to me and said something. Confusion must have registered on my face, so she repeated herself.
“She’s probably embarrassed,” spat the woman, then scurried away.
My phone rang.
The nursing center. Mom was sitting outside and wouldn’t come out of the heat. She was sure that we were coming to take her home.
“Is there a chance you are coming here today so that you can talk to her?” the caregiver implored.
Yes. Yes. I would be there within the hour.
Dear Friend had caught up to me so we hurriedly finished our errands as I told her about the call.
What had that woman just said to me? Not “said”, but chided.
I get it … can imagine the conversation she had in the car with her daughter, “Why did they let that poor woman look like that?”
The power of those three words and the tone in which they were delivered. “She’s probably embarrassed.”
I felt horrible. How could I have not taken better care of our dear family friend? I had let her down.
Then … it bowled over me. The anger.
Angry that I hadn’t hunted the woman down and asked her what she meant.
Angry that I’m pretty sure I DID know what she meant.
Angry that I had not been more thoughtful toward our friend.
Angry that I didn’t turn the other cheek.
Angry that the stranger and anyone else judging us was missing the beautiful story I was part of.
How was it the woman’s dang business anyway?! Seriously, this was Walmart, after all. Not a place known for fashionistas. Apparently Mrs. Sorority never watched Youtube videos of a walk through Walmart.
Besides our friend didn’t have any idea that I left her with messy hair. She wasn’t embarrassed. Only this stupid woman was embarrassed. Well … now I was too.
The words were on spin cycle in my brain.
“She’s probably embarrassed.”
They turned into, “You are embarrassing.”
Ugh … I was screwing up … and here was Mom needing me … waiting on me … as she created a bit of a crisis at the nursing center.
When we got to Mom’s, there she sat … out front with a sack stuffed full of her belongings. Even faithful Leon, her partner of 20 years who visits EVERY day, couldn’t get her to come back in.
We sat and listened. Tried to help her sort out her confusion. Mike brought sandwiches for us, and she readily ate hers. (A very rare thing!) We became happy about all of this. It was only the 3rd or 4th time since February that Mom would allow us to take her outside. A picnic on top of it all registered in the miraculous.
She visited with Dear Friend; each concerned for the other’s welfare. Each enjoying those Subway sandwiches.
She kept saying that she wished she could just see the house (the home she raised us in) for just a few minutes. I looked at Mike … did we dare?
It was finally decided … the nurse in charge agreed that Mom would be okay for a drive. She could go with us to take Dear Friend home as long as she understood that she couldn’t get out of the car. (Man, oh man. What would I do if she stubbornly fought us on this?)
Awe. Wonder. Exhilaration. Tears. We drove Mom to the town where she had been born and raised and had in turned raised her own children … where she had spent three fourths of her life.
Just before we dropped off Dear Friend, Mom got an idea. “You know, I have a picture of us (Dear Friend and her) in my room. It is a good picture. Could you take a picture of us?” she asked my husband.
“Certainly,” he said.
“Oh yes,” said our friend, “We’ve had some adventures, haven’t we? We need to record this one too.”
Mom reached out and smoothed her friend’s hair (without saying a word), and Mike snapped the picture.
We said goodbyes, then drove to all of Mom’s special landmarks. She even got to visit briefly with a few loved ones in town who hurried out to our car when they realized that she was with us.
Driving back to the nursing center, Mom spoke up after several minutes of quiet.
“Thank you. I’m really glad we did this.”
And then she asked for another sandwich. And a root beer float.
“I would have bought her 20 sandwiches,” my husband said later, as it was so unusual for her to feel hunger or ask us for favorites.
At that moment, 30 miles away, back in the college town was running around a stupid woman who had entirely missed it that day. A stupid woman who thought that beauty was about what someone looked like on the outside. A stupid woman who must have thought she was going to fix things by scolding me.
And next to my mom sat another stupid woman … a woman who had let judgmental words nearly crush my day … one of the most beautiful days I have ever lived.
There really is a fine art to being stupid.
I would very much love your responses and to hear your experiences with your own loved one. HOWEVER, please don’t ask me how Mom must have gotten dementia, if it’s hereditary, or if I’ve tried cannabis, essential oils, various diets, etc … etc … etc …
Trying to explain it all just wears me to no end. I don’t have any more answers than anyone else. But trust me … we are looking into everything that we can do on our end to help.
Prayer though … that is something I will never turn down. And I would be happy to pray for you too as nothing carries a burden like prayer.