Carol's Story: Losing Someone to Dementia

It doesn’t seem like so long ago that dementia was just another word, one associated with ‘old age’ or senility. I don’t know that I gave it much thought when I was in my 20s, I was young, my parents were young, it just wasn’t something I needed to worry about, or so I thought. It’s like cancer, it’s someone else’s disease…until it isn’t.

Thanks to medical technology and the internet, and the fact that we ourselves are getting older, we now know what it is, the signs and symptoms and to some degree, how to deal with it. It is a learning curve for sure, an education within itself. But it is no longer just a disease for the elderly, as we see ever increasing numbers of younger people affected by it as well. It has become a raging epidemic, a road no one wants to travel but sadly, chances are you or someone you love will.

I have learned about Dementia through experience, as most of us do. We are thrown into this myriad of emotions and life altering transformations with no choice and at present, no cure. My mother was officially diagnosed in 2019, but our family had been dealing with it in some way, shape or form for about 15 years prior to that.

Over time, we all came to believe in our heart of hearts that she was falling victim to this dreadful disease. It wasn’t only simple forgetfulness but changes in her behaviour, as there was now a fear and a paranoia present that we had not seen before. Trying to see or speak to her family doctor was an impossibility, thanks to privacy laws. But we knew, how could we not.

Our mom was changing before our very eyes and we were utterly powerless to stop it. At first these changes were small, rather insignificant blips on the radar. Perhaps it was due to the stress in her life as she was also the sole caregiver for our dad, who had Parkinson’s Disease and was still living at home. It’s not that mom wanted to put him in a home and couldn’t, it was that she desperately didn’t want to do that, she wanted to care for him in her own home for as long as she could. And I admired her for that, so at that time helping her accomplish that was paramount. As one can imagine, that was incredibly difficult for her.

I look back at the early stages and realize those signs were so miniscule at first, but they were there. Hindsight gives us the ability to really see it for what it was. It not only takes time to diagnose this disease, but it takes time for reality to settle in and acceptance to begin.

My journey through the many paths and side roads of dementia has allowed me to break it down into specific stages, as I walked it. Everyone’s path is different, some are much shorter, but does that make it harder or easier to endure?

Our pathway has been a long, drawn out series of events that has been hard on the heart at times, but I am thankful that mom is still with us. It’s a Catch-22 situation really, we hate to lose our loved ones but the reality is, we’ve been slowly losing them all along.

Stage One: In layman's terms, I would simply label this one, ‘Normal Life…Almost’. And that’s exactly how it was, just everyday life. We all forget things, mom is getting older and has some stress in her life. It’s a new normal, but given the circumstances, it’s normal. So we forge ahead unfettered, with no idea of what is to come. Perhaps our brains are wired that way and maybe that is a good thing.

This was the calm before the storm.

Stage Two: ’The Realization Stage’. The ‘Aha’ moment, the moment when you just know something isn’t right here. Time to pay attention and ask questions. It was at this stage that mom’s behaviour began to follow a pattern of sorts. She believed people were stealing from her and trying to break into her apartment, even contacting the RCMP on occasion.

Compounding the problem, she was living on one end of the country and all five of her children were living on the other. We relied on the kindness of relatives to check in on her at all hours of the day, or night if need be, as well as all of us taking turns flying across the country several times a year to help out. But this was a temporary fix only. She was still caring for our dad, and if she knew something was amiss with her brain, she’d never let on. Mom was always good with the cover up.

Stage Three: 'The Testing Stage’.

Our dad passed away in 2015, so a plan was made to move mom across the country to live with all of us. It took some encouragement, but she eventually did agree to leave the city she had called home for 40 years as she needed to be nearer to her children, and to start the lengthy but critical process of diagnosis. Unfortunately, there isn’t a test that definitively diagnoses dementia, it’s a multitude of doctor visits, biological testing, cognitive testing and visits with the Home Care nurses. It was a difficult process as she was becoming paranoid, and felt we were conspiring against her. And to add insult to injury, her living accommodations weren’t exactly conducive to her needs. Gone was the option of living independently, and supportive living wasn’t available without a diagnosis. Another Catch-22 situation.

So in the interim, she lived with her children, packing up her suitcase every few weeks and moving from one house to the next. It was difficult to have her stay permanently in one place due to everyone’s various schedules, but it was also becoming a challenge for any one person to manage her care for extended periods of time. Mom was also showing signs of Sundowners Syndrome, where she would become anxious, confused and disoriented in the evening hours, hence the name.

Sometimes she wouldn’t recognize us or remember that she had eaten, and on occasion would even barricade herself in her room. Nothing we could do but wait it out. Her behavioral changes also meant that my kind, sweet mom was losing her filter, and there were times when it was impossible not to laugh at the things she would say or do.

One moment I will not forget, (hopefully, we shall see where my DNA path leads), is when I had to have my 19 year old cat put down. My poor old Maggie, she was a part of the family and we loved her dearly. When I knew the time had come, I made arrangements for a friend to come by and have coffee with mom so I could take care of this unpleasant task on my own. I told mom of the plan, but she was having none of it, and quite angrily, said, ‘Well, I’m not staying home, so you can just phone your friend back and tell her not to come as I won’t be here!’ Well, I guess I have been told. So, I sheepishly phoned my friend, canceled the ‘coffee date’, packed up my cat and my mom and headed to the vet clinic to do the deed.

Upon arrival, I told her that she was going to have to sit in the waiting room and I would be out when I was done. Now she was quite happy to sit there and watch all of the pets and people come and go, I truly think she enjoyed that. My fear was that she might wander away, but I was in a bit of a pickle and having her in the room was not an option, so I just had faith that she would enjoy the hustle and bustle of the clinic and not venture outside. I said my goodbyes to Maggie and headed back to the waiting room. Thankfully, she was still sitting there, smiling as if all was good with the world.

As I drove away from the clinic with my heart in my throat, I was thankful now for the distraction mom was providing me as she peppered me with questions about my other cat, Megan. When I told her Megan was 15, she seemed shocked and blurted out, ‘Cripes! You’ll soon be putting her down too!’. While that might have seemed cold and callus, it wasn’t. Mom was losing her ability to be diplomatic, and I was fully aware of what was going on in her head. Mom was always the kindest person with a deep affection for all animals. It lightened the moment and gave me a memory to cherish. So I laughed, what could I do? And in typical ‘mom’ form, her next question was, ‘so, where are we going for lunch?’. Tim Hortons, it is.

Stage Four: The Diagnosis Stage.

‘Well, now we know what we always knew’. Diagnosis received, we now had to tackle the next stage of the process, looking for long term care. Thankfully, the next phase of finding an appropriate home for her was relatively short. She moved in quite willingly, even excitedly, as I believe she felt she was moving into her own apartment, independent lifestyle intact. But this was not to be the case, she is now on a dementia floor, the doors do not lock, and elevators are not accessible without a code. And, much to mom’s dismay, all of the residents on her floor are ‘old’! She tells me she does not belong here with ‘these people’. If I had to guess, I would say that some of ‘these people’ might even be younger than her.

This new phase isn’t exactly smooth sailing, she is often crying and upset, saying things like, ‘I don’t belong here, I want to go home’. It is heartbreaking at times, but she is in the right place. None of us are equipped for the 24 hour care that my mom now requires. We finally know what it is and what we should be doing, but that knowledge does not necessarily bring peace of mind. Again, it’s a process and this is but another leg of our journey.

Stage Five: Acceptance.

‘We’re here’. It’s been a long road, we are still learning what to say and what not to say. Our new job is to make sure she is as comfortable and happy as possible. I make light of every situation and laugh when I can. As I often say, it’s not about making memories for mom anymore, it’s about making memories for us. We take photos and enjoy her company when she is good, and comfort her when times are not so good.

I do believe that she is in a good place, and that she feels safe and happy for the most part, and I take solace in that.

While watching our local newscast recently, I saw an interview with a cartoonist from Victoria, BC, who chronicles his mom’s journey with dementia in his daily cartoon publication. His lighthearted approach to living with dementia was a lightbulb moment for me. The things his mom said and did, it was as if he was writing about my mom. It’s a coping mechanism for him, and it was both hilarious and comforting for me.

If I’ve learned anything from this journey, it’s that we absolutely must laugh at the moments we can. My mom would be the first one to laugh at herself. We cannot change the past, but laughter can certainly help us cushion the present, and perhaps even to some degree, the path forward.

-Carol Parsons, Beaumont, Alberta

 

 

Please Note: The views and sentiments expressed in this story are those of the author and do not necessarily reflect the opinions of our organization. We encourage open dialogue and diverse perspectives on important topics, including the challenges of dementia and being a care partner.