The other day I walked in the door after work and Mom was sitting at a table near the door. She looked up at me, beamed and began to clap her hands.
It was delightful. How often do you get a round of applause just for walking in the door? Somehow it felt just about right after an exasperating day at work.
But it made me think about how many of us could do with a little applause. We work in quiet ways in our homes or offices without a moment of public appreciation. I began to picture the applause that all of us caregivers in particular deserve.
Picture it with me. You survive one more day of caregiving. In your moment of finishing the day exhaustion, you watch a symphony hall worth of people leap to their feet to give you the standing ovation you deserve, just for today.
Nights like these are not for going to sleep early. Whether it’s the rain or the fact that it was a shower and fresh clothes day, or some other inexplicable tilting of the universe, Mom and I find ourselves hanging out in the kitchen cracking jokes tonight, so very late. My plans to get some rest after a long day that began at 5am are set aside with only the mildest hesitation.
I have pulled out the ice cream, the good stuff that I keep hidden in the back corner of the freezer for just this kind of evening. Mom’s delight is worth it. Her ability to find humor in these moments amazes me. She tells me she is cold, and I ask whether she is too cold for her ice cream. The reaction is priceless. She makes faces at me between mouthfuls. She is cheerier than I have seen for weeks now.
Mom tells me my cat, also in the kitchen with us, wants dark chocolate and I pull out a bag of what is left of of the birthday chocolates Mom’s sister sent her. We do not share any of them of course with the cat.
Suddenly, we are sitting in every kitchen as mother and daughter late at night, laughing. Nothing feels that serious. There is a camaraderie in the simplest of pleasures, sitting up together too late at night with treats. This moment could be when I was a little girl eating goldfish crackers, delighted that I don’t have to go to bed yet. Or letting Mom distract me from worries over what I should do with my life over my preferred late night meal of stacked up cheese sandwiches as a hungry teenager. Or a night as an adult visiting home and spending that last night hanging out with Mom before heading back across the country to my busy life and months before I would see her again. Or now where I am the one stashing the ice cream for Mom and doing the dishes as she enjoys her treat.
It is any of these times and all of them. In the end, this is why I keep Mom at home, postponing again the inevitable. These times are where wee find family, in kitchens over food, laughter and the ordinariness of the day. Or the ordinariness of a night when we delightfully stay up too late, indulging ourselves as we can, lingering here for a little bit longer. Always, hoping for just a little bit longer– before bed, before separation, before yet another change, another goodbye.
I put Mom to bed almost every night. On occasion, she heads there herself. Every now and then, someone other than me does the tucking in. But for most of the past couple of years, it has been me. When she lets me, I help her into pajamas. I pull back the covers, take off her glasses and set them on the dresser.
Tonight she was exhausted and before I could pull back the covers, she lay down on top of the bed. The wrong side of the bed. Everything in me recoiled at the sight of Mom on the left side inside of the right side where she belongs.
Mom has slept on the right side of the bed, well, always. My dad had the left and Mom had the right. This was true through various houses and room arrangements. And I have watched her maintain her side clearly over the past couple of years, even with no one sleeping on the other side of the bed next to her.
Until tonight. When she lay down to go to sleep on the wrong side of the bed. I wanted to move her and yet, nothing about that would make sense– other than it fixing for a moment my need to keep things the same that they have always been.
But things are not the same. As of today, Mom does not remember a habit of at 45 years.
I got Mom some ice cream tonight and we sat together while she ate it. As she was enjoying her fudge bar, my cat jumped up on the couch and began wandering over to Mom.
While Mom is increasingly fond of my cat, she prefers not to touch her. She likes the cat on the floor, with a nice distance between her and that fur and claws.
So Mom immediately jumped away from the cat and asked me to get her down. I laughed and asked her why she lets my cat bother her. Her answer, “I like what I like.” Mom likes the fudge bar, not the cat. Simple. Clear.
All of us could use that kind of clarity sometimes. I like these things. Not those. I don’t like my job. Some days I would rather read chick lit than anything more literary. But for many of us, our likes and dislikes get swept up in our responsibilities, the compromises we make with and for with the people around us, and concepts of what we should prefer.
Some of this is good of course. Eating Mom’s pizza and ice cream diet would be a terrible life choice for me right now. Neither is quitting my job the right choice for the foreseeable future.
Though most of what Mom navigates now is challenging and painful, I envy her the clarity that at this stage, she can simply like what she likes.
Like today. Where I actually mix up words as I say them. I obviously know all the right words but I hear them coming out of my mouth in a slightly wrong order. And it takes me three trips back upstairs to gather everything together to be ready to go to the doctor’s office. Some days I forget things that should be easy to remember, like what book I finished just a few days before. And it scares me.
Do not be confused. I am not actually scared that I have dementia right now. Odds are good that I get it one day, but my plan is to worry about that then. But what scares me is how far my life is stretching me. My brain can only juggle so many loose ends and unresolved questions. I need to pick up the meds, call the assisted care place, find the missing toilet paper, pay the bills, talk to the caregiver about hours, and take the random items out of the freezer that Mom has stashed there. And when did she last have a glass of water?
And too, I find myself feeling that I need to remember everything I have shared with Mom since if I forget, then those memories are gone forever. So I want to hold on to the memories of a happy family. Of my competent mother.
Which leaves my mind full of these memories and worries and the endless things to do. My brain is simply too full and stretched by the crazy life of mine. And so I find myself grasping for the right word. Just like someone with dementia. Just like Mom.
So another relationship ended a couple of months ago and I am back to the wilds of dating life. This week I have my first first date in a couple of years and am of course contemplating how to juggle dating and caregiving for Mom.
I find myself staring at the question on the online dating site I frequent: “Would you date someone who still lives with his/her parents?” Answer– from every guy who appears like an interesting date for me: “No.”
And then there is the message from someone who thinks he is being creative by asking me what the movie about my life would be titled. I ponder whether I share one of my possible titles for my memoir about this whole caregiving journey. Not quite the plan?
At what point does one mention, by the way, I live with my mother with rapidly advancing dementia? Is this a topic for the first or second date, or the twentieth? Or even via email before the date if I share my honest answer to this man’s question? How will any of them react? The questions overwhelm me. I know and value the incredible life lessons caregiving has taught me but fear my choices make me a far too complicated woman in a pool of less complicated and of course younger women.
Even Google provides me with no answers. An internet search for dating and caregiving finds me various musings on dating for caregivers caring for spouses who explore dating on the side as their spouses’ conditions worsen. Complicated also, but nothing like what I am navigating. An article on Match.com only depresses me as it explains, ” 40 million people — most of them baby boomers — provide care to an aging parent.” It does however provide the helpful advice to manage my time wisely.
This does however give me a new idea for my memoir title: If only I was a baby boomer.
When Mom sees kids, she wants to go talk to them. The thing that I love is that she tells me that she often tells me that she is going to go say hi to her friend.
There is such a beauty in the idea that any child is her friend. Race, gender, exact age is unimportant. Any small person is a friend of Mom’s. Her day is brighter for seeing them. We usually spend some time waving if not having a conversation.
And no actual conversation is required. Mom connects with her friends. At the grocery store, on the street, at the farmer’s market in the rain, at the beach. Happily most parents can see her delight and genuine friendliness with their children. The woman has simply got to have the chance to say hello to her friends. And her other friend. And the one over there too!
Am I on Life Plan C at this point, or D or perhaps P? I am not sure how many times I have revised my hopes and expectations in caring for Mom.
But the other night was a hard conversation. Sis and I agreed that it is time to put Mom in a home. The only good reason to keep her out at this point is to wait longer until facing what will be a huge monthly bill from now until the end of her life. But given how quickly she has gone downhill, that may not end up mattering. We can pay for a facility for the foreseeable future.
But, Mom increasingly is overwhelmed by life at home, a household full of things to be moved around and hidden away. I worry about her getting into things she should leave alone. And we simply cannot watch her all the time. She gets up in the night or early morning and wanders the house.
And, it is time to start carving out a bit more of a life for me. I have thrilling fantasies of going to the gym after work, being able to leave for work without worrying if the caregiver is here yet, and perhaps having a friend over for dinner without interruption. Wild, right?
Suddenly it has been two and a half years in which my life has been dominated by caregiving. Where did that time go? I am mystified by all I used to do and how little seems to fit into my life now after the meds are dosed, we spend a little time together and Mom is fed and put to bed.
So it is time for a new plan, where she gets a higher level of care and I reclaim a corner of my own life. Plan Q, here we come!
So I wrote up my rather absurd efforts to find my moved by Mom keys the other day. Finally last night, I had to admit defeat and call a locksmith to make me a new key to my car. The other missing keys are more easily dealt with but my spare car key had gone missing some time before so I was stuck.
Two hours and 220 dollars later, I was functional again.
So this morning, I went in to Mom’s room to find her sitting on her bed with all the sheets and blankets stripped off. In typical fashion, there were several piles of books, magazines, papers and odds and ends covering the bed.
I looked more closely. And saw my spare car key.
Guess I can skip today’s planned trip to the hardware store to make a spare!
So, I was literally standing outside my door today, already late to a work meeting, when I realized that I had no keys to lock the front door. Or of course drive my car into work.
I ran back into the house looking for them in the couple of the obvious places I sometimes put my keys other than my purse. Nope. And nope. I dug through my purse again. No keys. So, I started looking around. Twenty minutes later, having gone through my laundry basket (did I leave them in a pocket?), pulled every cushion off the couch, and combed through the obvious locations in Mom’s room, I still had no keys.
At that point, I was truly late to my meeting. I ran for the bus and made the second half. No worries, I thought, I will find the keys tonight.
Well, tonight has come and gone, and I am now clearer on just how many parts of my house need cleaning. I have checked in every nook and cranny — in every drawer in Mom’s room, the kitchen cabinets, into any container that appears larger enough to hold keys including Mom’s winter boots and the purse she has not carried in more than a year. I have discovered my bag of travel toiletries, which I did not realize was missing and my work security pass card, which I did know was missing and was pleased to find. What I have not discovered is my keys.
And to think that Mom was once the most organized person I knew.