Can we start by talking a little bit about the relationship with your parents? You mentioned your father was the primary carer for your mum.
We did a lot of talking and had the realization that dad was her caregiver and that was the very best situation for her and him. Then we decided together what we’re going to do is support him, even if we didn't totally agree with his decisions every time, as long as we knew it was not compromising her quality of life by any means.
We're really lucky that Angela and I are both at a place where we're not dealing with demons from our past and looking for completion in our relationship with our parents. There are a lot of family dynamics out there that tend to bubble up to the surface when you're losing a loved one in the family, that can be really damaging. It's such a fortunate thing that our family was close, to begin with, and got closer through this process.
I think that dealing with the baggage that you have in your relationship with your parents before you start to make decisions with and for them is extremely important, or else you run the risk of making the decisions for yourself and those decisions may not be in their best interest.
How did your relationship with each other change during the different stages of caregiving?
The three of us each had separate and meaningful roles. Having a close relationship with my sister was a huge asset. We acted like a team to support both our parents. We also helped each other with the caregivers’ curse… guilt! It didn’t matter how much we each did or how often other people would comment on our devotion, guilt was so near the surface.
When Tracy felt guilty because she lived out of town and didn’t get a chance to see mom and dad as often as she would like, I was able to tell her what an amazing daughter she was to take so much of her free time to come to Vancouver and spend with mom. She did the same for me when I expressed guilt. Interestingly, it wasn’t her telling me the reasons why I shouldn’t feel guilty that made the biggest difference. It was recognizing that her guilt was so undeserved.. Having seen that for her, I was able to accept it much better for myself.
Even when other people are saying “you're doing such a wonderful job” or “you're so devoted”. There is this feeling of, “yes...but it's not enough”. I could do better or I shouldn't be out enjoying myself tonight, I should really be visiting my mom. It comes in so many different forms. I want people to know that it's something so many of us feel and so often is really not justified.
The other thing is to recognize that you don't get any moment back. So if you're going to spend time with the person that you're caring for, you're not spending it with your other friends or your family and those are missed moments as well. It can seem like the experiences with the people that are closer to death are more important because there are fewer of them remaining. It is a challenging situation and I think we have to remember to be kind to ourselves in finding a balance.
Can you talk a bit more about the experience of living away from your mum at this time?
The trip could be challenging depending on the traffic and the weather over a few mountain passes to get from the interior B.C. to the coast in Vancouver where they live. I've been here for twenty four years or so, actually, coming up twenty five this summer, and when I moved here, mum and dad were absolutely in their super active sixties.
When the challenges with Mum’s health and her mental capacity became more apparent...that's also when I felt that I should be closer. But I wasn't. I have my business here and I couldn't relocate the family or relocate myself without the family. So I bought an SUV that could drive in all types of weather.
I'd make the trip to Vancouver as frequently as I could the last few years. Every four to eight weeks, usually more around four to six weeks. The time in between my visits usually felt like it was too long because she was changing quite a bit. And if I wasn't there for a month, there was a big difference.
Life got in the way sometimes. I wouldn't get to Vancouver for six or sometimes even eight weeks. But I did the trip back and forth - often times I was going down Thursday night after work and then spending Friday, Saturday, coming back Sunday and other times I'd go down and stay when dad needed a break. That was my challenge, being there as much as I could but feeling like it wasn't nearly enough. Thank goodness Angie was next door.
Angela - how did you balance caregiving with the rest of your life given how close you were?
This was one of the most challenging aspects for me. As a secondary caregiver, I still worked near full-time hours and had a family of my own. At times I felt guilty for spending my free time away from my folks. The caregiving shifted over the years. At first it was taking mom to doctor’s appointments and out to lunch to cheer her up. Then it was trying to explain to her why she needed a companion when the family was not available.
I think she felt angry and betrayed somehow that we had made that choice. There were times when something changed suddenly and we became mobilized as a family. For days or weeks it was the primary focus in our lives and other times when life remained stable and we were able to feel some solace in nothing changing too quickly.
For each of you how did the grieving process happen given that Alzheimer's and dementia played such a big role?
Once verbal communication became almost impossible, I remember a day when mom and I stood at one of my many azalea bushes that needed dead-heading. It was sunny and warm and we stood side by side for some time just plucking the dead azalea buds together. It was peaceful, she was content, we would smile at one another from time to time. I knew that this stage wasn’t going to last either so I enjoyed it as a new way to share time together with my mom.
When mom eventually passed peacefully in her sleep on Feb. 4th, the final moment of grief had arrived. As a family we said our good-byes and felt relief that she was now entirely at peace. Although sad, I feel like my grief had been spent over many years and this final chapter was one more step in a long series of steps.
Something positive happened after Mom died that I wasn’t expecting. Being freed from the reality of her in the present, allowed memories of happier times with her to come flooding back. Instead of thinking of mom in a wheelchair, I remembered times together before she got Alzheimers.
One memory that comes back to me often was when we took her to England, the country where she was born and lived until the age of 16. She was in her late 70’s and we rented a canal boat to tour the English countryside, stopping at pubs for meals every day. I can still see the sunlight lighting up her blonde hair when she was running, (yes running) alongside the boat with a huge smile on her face.
At times I could not envision how things were going to work out. But it did. I think that looking ahead, especially with Alzheimer's, all I could see were these signposts of, “she's going to lose this ability and then have that challenge.”
But what I didn’t see when I just looked at it all looming in my future was all the grace periods in between those times. The space in between is what makes the experience manageable, and even delightful at times.
We both really delighted in who mom was. We got to the stage where we could let go of who we wanted her to be for us and just enjoy her for herself. And that was a very good place to be.
What advice would you give to those caring for loved ones with Alzheimers?
I would say first and foremost if they can connect with an Alzheimer's Society in their area, that that is an absolutely great source of extremely helpful information, but also incredible support.
They would call every six months and just check-in. Ask us - how are things going? Are you at a new stage? Is there anything you need? Is there anything you want to talk about? And it was also known that anytime we wanted to call them, the door was always open. So definitely connecting with a group like that is absolutely crucial for ongoing support. When you first start this journey, there are so many questions.
You don't really want to believe that this is what's happening. And there's a period of time where I found that I would just sort of pass it off as something else, instead of saying, "oh, mum's memory is really poor". I found a lot of other excuses for her behavior in the initial years, when things were quite mild. Then there's a time where you realize, okay, something's wrong. What is it? I think at that point, it's so important to really have a proper diagnosis, which is not always easy because some people resist. It's sometimes our worst fear and we almost don't want to know. So I think it's the braver and stronger approach to get an appointment with a geriatrician and find out really what you're dealing with because once you know for certain, you can start building up a community of support.
What are you most grateful for right now?
Mom passed away earlier this year. She died peacefully surrounded by her family at home. While we miss her, we are also grateful that she isn’t alive during these very challenging times of the COVID-19 pandemic. The thought of not being able to get close to her now in fear of making her sick, or of having many caregivers in and out of the house makes me grateful that she passed away when and how she did.