Learning to Love Intentionally When Your Loved One is Hardest to Love

October 11, 2023

Submitted by Carolyn Birrell
Author
Walking with Fay

Whether or not you’ve read my book, Walking with Fay, I think we pretty much already know each other. Because I’m THAT woman. The one you’ve seen sitting in the doctor’s waiting room next to a scowling senior citizen.

I’m the woman you heard about from your neighbor, scouring the neighborhood at all hours of the night, searching for her wandering mother.

I’m the one who stole her mother’s car from her – I empty her bank account on a regular basis.

And you might be the person who doesn’t know how to respond to your husband’s increasing anger – maybe you’re even a little afraid to be alone with him now. Or you’re the one whose parent refuses to move into an assisted living home even though it’s clear they shouldn’t live by themselves any longer.

We all sort of “know” each other. It doesn’t mean we’re the same, but we’re also not so different from one another, either.

One of my differences is that I’m a little ahead of you on this journey you’re taking. And somewhere along THAT line, I turned my journey into a book… and it begins like this:

“In 2012, I flew down to Georgia to kidnap my mother.”

That’s how my book opens. Impactful, solid hook. I’m told it’s a powerful read, full of relatable stories and helpful tips. And that was my intention when I began writing it. To help new caregivers feel a little more normal. Validated, even. To know they’re not alone in this.

From the very first words I wrote, I was committed to telling the whole truth, complete with every embarrassing mistake I’d made, every mess I had to clean up, and every treacherous thought I had in my head along the way.

Sort of like that friend you have who wants to give you all the gory details of their last stomach bug or ER visit – because it was so enormous to them then that they just have to share it with you now. Every vivid moment.

And that’s how it was for me. I had this incredible need to impart on others the enormity of this new, foreign life I was living… to hopefully save the next person behind me from drowning, like I was.

And the only way I could think to do that was to write a book filled with all of those details … you know … include a nice storyline, a strong plot – so that it was at least enjoyable to read – but also make sure to leave nothing out.

I had no idea at the time how many people just like me were out there; that are still out there.

But what I’ve come to realize is that dementia, with all its chartable, documented similarities – and we all know them – those repeated stories on a 60-second loop, the paranoia, forgetfulness, and even the angry outbursts, is oftentimes as unpredictable as a twisting, darting snake that we can’t seem to grab hold of with a steadied enough hand to control

And what an analogy. I mean, who wants to grab onto a snake in the first place? But it does feel like that’s what you’ve been handed, doesn’t it?

It’s like dementia has this uncanny knack for choosing the unsuspecting and ill-prepared. I think if you ask any new caregiver, they’ll likely tell you they have no formal training, no spare hours left in the day for that added someone’s unpredictable, ever-changing needs, and little or no patience for dealing with those frustrating new behaviors that come with dementia.

I mean, how many of you asked for this new title of “dementia caregiver” for your loved one?

There you were – busy raising your kids, getting them through school, concentrating on your career, your relationships, your household – and WHAM! Someone needs your extra time now – to care for their extra needs – which you have no idea how to fulfill or even how you’re going to carve out that time to squeeze them into the life you’ve created that likely doesn’t have their name at the very top of it.

Your world is effectively turned upside down.

And what about that word – dementia? We use it so freely, don’t we. Whether it’s Alzheimer’s, Lewy Body, Frontal Temporal, or a diagnosis your special person hasn’t received yet (but one you’ve certainly identified as “something’s up.”) It’s a word that has dozens of nuances. Just the right amount, it seems, to keep you guessing, uncertain, and always feeling just one step behind.

And now it feels like you must find your way

along this new path,
that leads to who-knows-where,
without a map to get you there.

You’re definitely in a special category of pioneers now!

I guess what I’m trying to say is, until someone walks in your shoes – the shoes of a dementia caregiver – they’ll never fully grasp the all-encompassing disruption to your life as you knew it – top that off with the constant indecision over whether you’re even making the right choices for your loved one, the conflict between what you know is real and what your loved one perceives to be real, and even the resentment that often accompanies this new life you’re trying to find a way to adapt to.

It’s a lot, isn’t it? It’s monumental.

And here I am, about to tell you to find a way to be more loving, more understanding, and more patient with your (very likely) misbehaving, maybe abusive, loved one… that you’re trying to find room for in your already very full life.

First though, let’s talk about the help you need now – just to peacefully co-exist with your special person and provide the best care for them.

Resources are everywhere these days. They’re meant to guide us through the behavioral challenges thrown at us by our loved one with this terrible disease. They’re geared to support us… Help us feel less alone… They give us suggestions on how to handle those personality surprises and maneuver through the impossible situations we’ll soon – already have – or will continue to – find ourselves in.

The Alzheimer’s Association is a great place to start, with its endless supply of online classes, articles, and even a 24-hr hotline where you can speak with a real person when you’re in a jam. FOR FREE!

And there are other helpful resources, too – like other online communities, videos, and books – all easily found these days with a quick Google search.

There truly is “something for everyone” now.

For me, it was books. It was 2012 when I became a stunned, unprepared caregiver. Just that short time ago, online resources were pretty limited. So, I began searching for what I needed in books. I looked for anything written by an author who was experiencing the same things I was with my mother.

But I came up short every time. I couldn’t find even one that I connected with fully.

They were either written for a more medically trained reader or the dementias they described were already a good deal more advanced than my mom’s. And celebrity memoirs always left me feeling more helpless, even resentful, comparing my situation to theirs. Like, how could they possibly know what it was like for someone like me, an ordinary person?

I didn’t have the benefit of paid in-home staff. And I couldn’t afford to place her in a care home (nor was I ready). I really was just an everyday person frantically treading water while trying to live my everyday life.

Where was that down-to-earth author who was dealing with the same paranoia, confusion, and accusations that my mother – in her earliest stages – was hurtling at me? All-the-while trying to keep their job, their family intact, and locate help they could afford?

Here I was, making life-changing decisions for her while she was insisting every one of them was wrong. She told me repeatedly that I was deceiving her, hurting her, even. And certainly, disappointing her. She had me doubting myself about as often as I was sure that I needed to step in and take control of her life. Decisions I was not prepared to make on my own, but there I was, doing just that.

Because in the beginning, my mother was lucid and believable at least half the time – which was doubly unsettling, since it often left me wondering whether it was ME who was overreacting. Some days, it was easy to see that she needed my help. Others, I truly felt like the controlling, judgmental, mean-spirited daughter she told me I was – who didn’t care what her own mother wanted or needed. I was apparently “hell-bent on barging into her life and making her miserable.” And these two contradictory opinions flip-flopped in my head daily.

I was always off balance. And I never knew which “Mom” I was going to meet every day, so I was never fully prepared for either of them.

And I hadn’t planned an extra category in my life called, “You’re about to become your mother’s caregiver who needs your help but is going to buck you every step of the way.”

And ohhhh… the mistakes I made.

I can look back on the day my sister and I surprised her in her driveway in Georgia by showing up and telling her we were taking her on a summer trip to visit me in Idaho. We loaded her and one suitcase into my sister’s car, which she drove back to New York to wait while I emptied Mom’s house and drove her choicest possessions 3,000 miles cross-country to Bonners Ferry, ID, and set up her new house. There were dozens of snafus mixed into that two-week escapade, but we got her there, extremely confused, and mad as Hell.

And I still remember one morning a few weeks after she’d arrived when I caught her out on one of her many walks and asked if I could join her. There was always a 50/50 chance between Yes I could, and No I couldn’t.

That day, it was a YES, but I could tell something was off. And I hadn’t yet mastered any of the skills I needed to diffuse her and keep the peace, so I was immediately on edge.

We ran into her neighbor, and I reintroduced them, like I did each time they met. After our usual pleasantries, my mother announced that we were walking to the grocery store because “I had stolen all her money and was keeping her locked inside the house with no food because I was punishing her. AND could her neighbor please call the police for her because I wouldn’t allow her a telephone.”

I wish I could tell you how cleverly I handled that morning. How smoothly I glided through the conversation without a hiccup. Instead, I turned to the side and rolled my eyes at her neighbor and whispered something about my mother not knowing what she was talking about… that my mother could absolutely hear.

I remember how she turned around abruptly, our walk officially over, and I had to chase after her to get her to return to the house, leaving her neighbor standing on the sidewalk with her jaw hanging open. Just another example of how convincing my mother could still be.

So, while I continued to make my mistakes, I continued to visit my library. I scoured the shelves for that perfect book that would help me be a better daughter – a more natural caregiver – smoother. I didn’t have a name for it… I just needed help. I swear I read every book on dementia I could find, and it didn’t take me long to realize that through my own experiences and the notes I’d been keeping, I was creating the very pages I’d been searching for.

And like I said earlier, my initial goal was to prepare the new caregivers behind me – to help them feel more supported with stories they could relate to, from that person you’d meet walking down your own street.

By writing about the very things that happened to me, I hoped to give my readers real examples of what THEY might expect. To even share with them some of my own tips on how I coped, with truthful scenarios of what worked for me and what didn’t.
And I did accomplish that.

I’ve spoken with so many people along the way who’ve told me how I somehow captured what they’d been feeling, and how it helped to know that they weren’t the only ones experiencing those emotions that “we don’t easily admit to others.”

I’ve listened to their stories of despair, fear, and even anger.

There have been so many times when my heart would break for them as they relayed to me scenarios that were so like those I’d just heard from the person before them – and many that sounded a lot like my own.

But something changed for me during this year since “Walking with Fay” was published.
I started noticing a common theme that I hadn’t expected from the conversations I was having.

More often than any other emotion – and we can all list a handful of them without blinking, right? Helplessness, fear, indecision, impatience, anger… But it was regret that I heard repeated the most.

Regret over a certain tone they remembered using. Or a sharp reaction they’d had that they were ashamed of. Even regret over the way they felt about their loved one – always wishing they’d done better, felt differently, been more loving.

And somewhere along the line I’ve come to realize the true purpose of my book – or at least, it’s what I hope readers will come away with the most. It’s to remind and nudge the new caregiver toward more patience – more empathy – more humor even, while they’re on this journey.

Because, while we’re so anxiously searching for strategies to cope, to get along, to manage this seemingly unmanageable and often unlikeable person we’re now caring for, we’re at risk of losing sight of the very things that made us love them. And we stop showing them love.

“How can you blame us?” we shout! We’re busy now! We have to figure out some things that we don’t even know where to begin. New personalities. Difficult personalities! Doctor’s appointments. Medications. Insurance forms. Schedules.

And these are just the necessities; these new things now added to your to-do list.

Still, there’s no doubt in my mind that in providing them, you’re giving little gifts of love, whether you realize it at that moment or not.

You give love every time you get them dressed, feed them, give them their meds, get them to their appointments. When you spend time with them. When you make sure they’re clean.

Now, don’t get too complacent with that. Because giving love is not the same as showing love.
They ARE different, and showing love is really easy to lose while you’re giving it – while you’re busy taking care of

business.

See, we’ve become task masters now. Our edges have sharpened. Our responses come quicker, snappier. Sometimes we scowl. We’re hurried. We sigh.

And whatever their stage of dementia? They know. They hear it in your voice. They see it in your expressions. They feel it in your touch.

I KNOW this.

How many times do I wish now that I could go back and do things differently? What would I give to change that one regretful interaction (or seven) I had with my mother before she got to the point where she could no longer communicate?

Those times when she was the most unlovable, shouting hurtful things at me and behaving in ways the mother I knew, who raised me, never would have?

And what did I do? Did I look for ways to reassure her? To ease her fear and shoulder her blame?

I did try. But most of the time, and especially in the early days, I reacted. I rationalized and I denied. And I defended myself to her. I didn’t understand back then what was happening inside her mind. I just wanted her to stop. All mistakes common to the newly indoctrinated caregiver – but also ones that can truly be corrected with some practice and intention.

And since you’re here, reading this, I’m guessing that your intention is already there.

As for practice, every day is a new day for that. That saying found its way onto a sticky note on my bathroom mirror and stayed there for years – I just cleaned around it. I’d brush my teeth to, “Today is a new day to make mistakes.” Say it with me now, brothers and sisters! It’s a new day to practice showing love.

It’s whatever you want it to be, really, because it will be here tomorrow, either way. So why not start now?

Believe me, it took lots of practice for me to realize that those times when she was at her ugliest were also the times when she was feeling the MOST frightened and powerless.

In her mind, her own daughter had taken away every bit of autonomy she had left in her life. And she lashed out with the only thing she DID have control over – her response to me.

Her caregiver.

The person charged with keeping her safe. And the sole person she believed responsible for taking everything from her. Her home, her car, even her electric bill (and she missed it!) Everything she knew as her life was different now and didn’t make sense to her, or it was just gone.

This woman – she was once vivacious! Young! She had a job, attended church, and married a man with whom she raised three children.

And what did I see when I looked at her now? Mostly, a cranky, difficult, old woman who just wouldn’t listen to simple reason – like it was a choice she was making. So easy to do.

But the times I did get it right? Those times when I placed myself squarely in her shoes and imagined what it must be like to wake up in a bedroom that was positively foreign to me?

Or see myself entering the kitchen for my morning cup of coffee only to find that someone had clearly broken into my home while I was asleep in my bed and removed all the cups and left four gallons of milk out on the counter – all in varying stages of sour and near bursting? That was when I could truly see my mother for the frightened, confused person she now was.

Struggling to make sense of this Twilight Zone she was forced to live in. It must have been terrifying for her.

Can we really fully imagine living in a world that’s so topsy-turvy and scary like that? Only to be told (sometimes sharply) that it’s all in our head? By the person we love the most, trust the most. Until we don’t trust them anymore, because we’re convinced now that they’re lying to us – they must be. That they have some ulterior motive aimed at us. There’s no other way to explain it. We know what’s right! And they’re telling us it’s wrong. Now who do we trust?

Those were the times when I was able to let go of my anger. That righteous indignation of the falsely accused that I held onto so tightly, the put-upon, and feel my genuine love and sympathy for her return.

It was on those days, when I was able to replace my newfound burden of responsibility with more of a gentleness toward her. And I knew she could feel it, too.
I saw her for the woman she once was – she still was. And it helped her. And I know it helped me just as much.

I didn’t do it enough, though. And I wasn’t always successful when I tried. And I wish I’d figured all this out sooner, while I was so busy just trying to deal.

Because it’s the “after” that has been hardest for me. The “what ifs” that I don’t get to test out anymore. And it’s the thing I’d most like to help others realize. That you’re able to change even the habits you may have formed already, now, while you’re still walking on this path with your person.

And I know there’ll be times when you’ll want to leap off course, charging in the opposite direction to escape the torturous daily changes you’ve been witnessing (or soon will be) from your loved one. How many times did I?

But for now, your person is still here. And so are you.

So, you get the chance at a do-over. Every. Single. Day. Until they leave you.

It takes practice when they’re firing tennis balls at your head, but you’ll get plenty of it – sometimes in one sitting.

I just know that each time I managed to get it right, it was like a weight had been lifted off my chest; hers too. I saw it.

Easier said than done, I also know. But just for this day, hold onto that hopeful feeling of “doing better.” Because you can. It just takes desire and lots of practice.

And you’re already here, so you’re practically there!