Mom’s move to an assisted living facility left a mark. I ignored the signs telling me changes were required and I wish I hadn’t.
It happened gradually. At first, Mom just needed a bit of extra attention. Then she needed help with daily tasks–bills, keeping appointments, rides and other little things. And then, finally, she needed even more help. Unfortunately, it was more help than Lindsay and I could provide on our own from a distance. She refused to move-in with us in New Hampshire and that left only one option. An assisted living facility.
All told it was close to four years from the time Mom’s primary care physician gently put dementia on our radar, through her official diagnosis (a story for another day), and ultimately up to the start of her new chapter in assisted living. And I spent those four years on pins and needles, ignoring signs and pretending everything was ok. Looking back, it’s all an uncomfortable blur. I call it my early caregiving adolescence, and just like real adolescence, I’m glad it’s over.
In those early days, out of reflex, I did all I could to deny what was happening. I’d do whatever needed to be done to help Mom, but I spent a lot of my time ignoring why she needed the help at all–instead of seeing the signs and tackling them head-on.
If I had to go through early caregiving adolescence again, I’d do some things differently. First, I’d stop playing the denial game. Instead of covering my face with my hands and looking through the cracks of my fingers like I used to do watching horror movies, I’d look for the signs. I’d pry my eyes open and become an infinitely more active listener, watcher, perceiver.
And I would also act more quickly on what I was seeing. I’d figure out a way to talk with Mom. Support her. I’m not sure it would change the outcome in the long run but it would have been better for Mom. And for me. I would have been in control of the situation sooner and there would have been lots of comfort, for both of us, in that. Who knows, maybe the four years on pins and needles would have been only two.
So even though Mom’s (thankfully) in a good place in her life right now, these are the signs I’d look out for if I was an early caregiver adolescent again.
Mom was never the best driver. She forever had a ding here or a ding there on her car. But in this time period, it became more than that.
Put it this way, by the time I was offloading Mom’s car to the owner of a local garage, he said to me, “This thing’s hit everything but the lottery.” A good line that I chuckle at now, but he was right. I should have noticed and acted when two dings became three or four–never mind “the lottery.” I saw it happening, but tried to wish it away. I shudder when I think about it. We were lucky Mom didn’t hurt herself or someone else.
I should have talked with Mom about it, directly but with a heavy dose of empathy, to make clear that her driving days were over and to make sure she knew it was her dementia, not her, that was at fault.
Mom was a career nurse. Medication had never been an issue. Until it was. Like so many other parts of her dementia’s acceleration, it started as a trickle, grew to a garden hose, and before we knew it, it was a full-on fire hose.
What began with a few sluggish prescription refills quickly snowballed into a s&*% show. Because I let it. It was partly because Mom was always very protective of her medications (“I was a nurse for 35 years, don’t tell me how to manage my meds!”), but it was more of me wishing it away. My wishes didn’t make it go away, and they definitely did not help Mom.
To this day, I wonder about the health impacts from any gaps in her medication. Was it days? Weeks? Months? Is she feeling the impact now more than a year later?
If I had it to do over again, I’d act on the first observation. And I’d make sure to frame the discussion about her dementia, so she knew it had nothing to do with her ability as a nurse (or an adult for that matter.)
Changes in routine
Mom was always a gym rat. Not because she loved working out. I don’t think she ever really liked that, but she loved hanging out with her friends. Mom went to the gym religiously for as long as I can remember. And she l-o-v-e-d it.
On our daily phone calls, the gym was always the first thing she told me about. She’d tell me who she saw, what that person was up to, and maybe even what their friends were up to. It was an automatic part of our daily discussion. Until it wasn’t.
First it went to maybe every other day. Then it was once or twice a week. And before long it was the exception when she had a gym trip to tell me about, instead of the rule. I noticed it. I saw it happening, but I tried to deny it. I’d haphazardly suggest she get to they gym because she always enjoyed it so much, and then I’d move on.
It was the start of my early caregiving adolescence, and I had my head firmly in the sand. If I had it all to do again, I wouldn’t deny the facts to myself. I would recognize such a drastic change in her routine as a sign of a change in her condition. I’d talk to her about it, try to help her see it wasn’t her, it was her condition–and take action together.
Mom didn’t lose or gain a ton of weight. She didn’t stop showering. She didn’t dress any differently. Those signs are obvious. It just wasn’t as clear for me, but looking back, I know it was there. Mom did look different.
The sparkle in her eye was slightly less noticeable. Her coloring was a touch off. Her smile was still nice and warm, but a little flatter. And in general her presence wasn’t the same. Just like her smile, she seemed subdued, flattened somehow. Subtle, yes. But also noticeable to me. What I know now to be her dementia shell was slowly but surely becoming visible. But I denied it and tried my best to wish it away. She’s just in a funk. It’ll blow over. She’ll bounce back.
That’s what I told myself and I was wrong. The first time my eyes and gut told me these changes were adding up, I should have used it to start a conversation instead of covering my face and telling myself “there’s nothing to see here.” Who knows, it might have been the head-start we both needed.
Mom was always a neat-freak. Her home wasn’t big but everything had its place, neat and tidy. Bills over there and organized just so. Newspaper folded neatly on the table next to her chair. Dishes always done. Counter wiped down. It was borderline military style precision.
It went from that to….well, not that. I’m sure it didn’t happen overnight, but when I finally noticed it, the difference seemed drastic. Bills not in their normal spot and only sporadically opened. Dishes in the sink. Bed unmade. Not dirty, but not Mom either.
In the end, this was the big one for me. Had I not been busy trying to wish everything away, I would have noticed it before. And acted on it too. It did finally push me to talk to her (and her doctor). But I will always wish I had done it sooner.
Add it all up and it was time
“But where’s the mention of forgetfulness and confusion? How could he miss that?”
Well, I didn’t. Not really. That stuff was there too, but it was super mild. Those symptoms were almost like the cost of entry into my early caregiving adolescence. They were the reason dementia was on our radar in the first place.
At the beginning, the signs I mentioned here were happening in parallel, but they weren’t as definitive. As a result they were easier to explain away or deny. Which let me deny that anything had to change at all. Yet I knew she needed to be in a more supportive environment, either in our home or in an assisted living facility.
I wish I hadn’t though. Maybe then I would have only spent two years on pins and needles instead of four. That would have been better for me. And more importantly, better for Mom.
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Brandy Mercier says
Sometimes stories just find you at the right time. Thank you for your story. My mom was just dianosed with alzheimer’s last year, she is also a nurse and just yesterday we convinced my sister who is a nurse to step in and take over her medication to make sure she is taking the correct doses. It was hard for my mom to let go of her identity as a nurse and give that up to my sister. After reading your story it was the right thing to do and just today my mom said what a relief it was to know my sister was taking care of it. Thank you
Matt P says
Brandy – Thanks for reading. Glad the story found you at the right time and very glad to hear your Mom’s in a good spot. All the best to you and your family on this journey.
Brian C says
Thanks, Matt. I’d add to the list of signs I missed what I mistook for obsessiveness over finances. For my father-in-law, this took the form of “doing his taxes”. He spent hours in his study every day “doing his taxes.” My father spent hours reviewing his bills and finances. With each, we thought it was a bit funny but a harmless way to spend their time. What it was masking (at least from us) was that they did not really understand the taxes/finances anymore, could not cognitively put the pieces together and/or forgot that they had already addressed the issue that perplexed them. Only when we started reviewing the bills more carefully and seeing bills paid twice, checks (thankfully small) made out to sham charities or ones that they’d never have supported in their stronger years did we recognize that this was not an obsession or time-filler, it was confusion and memory related.
Matt P says
Brian – Thanks for reading and sharing your experience. This is a really good one and I’m glad you commented for others to see.