[Tea]
Because you previously spoke about the difficulty that the pandemic brought in caring for your mom – things like heavy restrictions, the fact that you couldn’t hug her, you couldn’t even see her – I want to ask about how technology played a role in helping you connect with her. How can technology enhance the lives of seniors and their caregivers?
[Naomi]
I’ll tell you a little bit about what happened when the lockdown first started. I had flown to see my mom. I think it was March 13th of 2020. By the very next day, they had locked down everything. I had come to see her at the appointments. My biggest problem was that when I went to go in to see her that day, they were still going to let me visit and give her a hug and everything else. Unfortunately, they didn’t have enough PPE, so I couldn’t see her.
Then it was locked down and I definitely could not see her. For not having the right equipment, I wasn’t able to see her that day and then for over four months after that.
You definitely have to get super creative, like do wintertime window visits. But the thing is, they don’t really like it, you don’t really like it… And that’s not really the best way to do it. If you look at numbers, especially around the first wave, it was something like 86% of deaths in long-term care were people living with dementia. It was significantly high, and I think a lot of that had to do with loneliness.
Right now, I am a long-distance caregiver. My mom lives in Alberta and I live in BC. I’ve had to come up with some pretty creative ways to utilize technology to provide the best level of care that I can from where I am. I do go every three, or four months to see her and while I’m there, I do the in-person appointments so that I can help support her optimal health.
I’m also sending her books because she really likes to read or liked to read. That was something I wanted to encourage, so I would send stuff via Amazon or I would buy some magazine subscriptions online and then I would send them to her. She loves food, like gourmet stuff. So, I would be sending her burgers or pizza, or anything to kind of cheer her up and make her feel good. I didn’t want her to think she was forgotten about, or that her family didn’t love her just because they weren’t physically there able to visit. We also did Skype calls. The home was understanding that people needed a little bit more access to their loved ones.
They bought tablets and set up weekly calls with loved ones. I even bought a tablet myself, but it’s also very hard for somebody living with a cognitive impairment to navigate technology. I think you have to find ways that you can use the technology, and for us, it worked.
There have been other things that I’ve found along the way that have helped me stay connected using technology. There’s a little thing called Love Box. It’s a small box that has a heart on it and you can text it, whether it be pictures or little messages and then a little heart spins on their end and they can lift up the box and see your message.
Even as the disease progresses, there are things you can do. As my mom is moving into the later stages, she’s not as communicative as before. And there are other ways to communicate even if it’s not verbal, right? This does pose a problem sometimes when you’re not physically there, but this again is where technology can come into play.
My brother lives in Alberta I live here, so we’re co-guardians. You also have to find ways to stay connected there so that you can work as a team. Any kind of Wi-Fi-based platform that allows you to speak – that’s a great thing as well.
[Tea]
Yeah, that’s awesome. It’s good to at least have another family member that can share the load a little bit, because you live in BC and your mom is in Alberta and then your brother’s also in Alberta, you can at least count on him.
[Naomi]
We’re lucky that we’re really on the same page about the care, but that’s not always the same for every family. Sometimes, people have a very different way about how they proceed or what they think is needed for their loved one, or even how that makes them feel about their own brain health, especially if their loved one is early presenting or has an early diagnosis. Another area where there is a need for support is navigating this as a family. There are interesting dynamics at play and it’s a high-stress situation.
[Tea]
Very true, you bring up lots of good points that we can cover in another podcast series.
We’ve talked about this, but you were very young when this happened. You’re still young! Nobody really prepares you for being a caregiver. It just kind of happens and sometimes it happens overnight. If you don’t have those resources or knowledge, it just comes as a shock. I’m bringing it back to this idea of when you’re becoming a parent – you have those nine months to prepare mentally, physically and financially. But when it’s someone like a parent or a loved one, you don’t have that luxury.
[Naomi]
I agree. The best way I can describe it is that it’s really just thrust upon you.
From one day to the next, I basically became the mother to my mother.
Whatever you thought your life was going to be is over. And now, this is a whole new thing, and it’s not like there’s a checklist or what I was saying about the repository, right? Even though so many people have gone through this, there’s nothing that tells you, “This is what you’re going to need.” You’re kind of just muddling along trying to figure it out.
[Tea]
When you’re in that space and there are not a lot of resources, we don’t know. If I had to become a caregiver right now, as a young person, I wouldn’t know where to go. I would be frantically searching but feeling very lost.
There’s also a lot of jargon too, even if you do look for answers. For example, what is the difference between a caregiver and a care provider? It took me a week and a half to learn the difference when I was looking it up. The language alone is difficult to navigate.
[Naomi]
Absolutely. I mean, there should be some kind of glossary. Should be some kind of thing because I agree with you. It’s a lot of terminology that you’ve never heard of before. You almost become an expert in this field after a while.
[Tea]
Totally. What did you find the most helpful? Any resources or support groups? What did you gravitate towards? If you were to think back on that on that time.
[Naomi]
For 10 years, I really wasn’t doing a lot. I was just trying to get along. I probably wasn’t accessing it in the way that I should have. I just kept going. “Just push it down. You got a job to do, get your job done.”
I find that there is a stigma around it and sometimes I can understand where the stigma is coming from. Say you talk to your friends and they’re not living in this kind of world that you are in. It makes them feel depressed. They don’t know how to help. It’s that hopeless, helpless kind of thing. It’s like, “Oh my God, I can see my friend’s in pain, but I don’t know what to do. I’m not sure how to help support her. This is way out of my realm of understanding.”
And it’s one of those things that if you haven’t lived it, you don’t understand. That’s the only way you would know. I was finding great resources, but where I really found the most benefit was talking to other caregivers who know exactly what it’s like and have gone through the thing and can give you some tips and tricks, like “Have you talked to this person? What about this? We could do this together.”
That’s when I really found my voice and realized, “Okay, I’m not alone”. There are lots of people out there. What I find with those groups is that it’s really the people that either have the fire or have the capacity or time to do it, but think about all the other people that don’t. They’re not being heard or talking about this thing. They’re just the same – going along to get along, because they don’t know how else to deal with it.
And this is the thing about this disease and caregiving – it is emotional. It’s exhausting, it’s difficult. You kind of have to set yourself aside and just really be about the person in the present moment. I think these are the times you should be seeking help, whether it’s a counsellor or just talking to somebody, because some of these things are just so profound and intense to navigate, that I don’t think you can do it without tools or resources.
[Tea]
And you don’t even realize that probably most of the time you’re in it and you just burn out, and that’s when you realize.
[Naomi]
Exactly right. And that’s something I really had to learn the hard way. I tell this to people – the best analogy is that on a plane, you must put your own oxygen mask on first. That is kind of the same thing here. Unfortunately, it takes a long time to learn. I don’t know any caregiver who steps into this and says, “Okay, you know what, this is all about me.” Just like a child-parent relationship, everything is now about this person and your life kind of takes a step back.
This is kind of where everything came to this crux. You know, it’s been 10 years. This is a progressive disease that really only ends in one way. If I don’t start living for myself and getting my own life, what’s going to happen when the inevitable takes place? I’m going to be shattered, I’m going to be destroyed. You know, my soul is going to be broken. This is where I had to start telling myself, “I am a caregiver to my mom, but I also some self-care for, too.” I started asking myself, “How do I put myself first? How do I navigate this in a healthy way?”
Here’s the thing – chronic stress is a contributing factor to developing Alzheimer’s. Something like 72 percent of people diagnosed with Alzheimer’s are women. The predominant family caregiver is a woman. You’re chronically stressed over an extended period of time. It really doesn’t help your chances of stepping away from the disease, especially with a familial tie.
This is something I would love to study one day in a clinical research trial. You know, how does this impact the caregiver over time?
Again, this is something I’ve really had to learn the hard way. You generally have to live with a sense of guilt in general. I feel guilty because I’m not there living in Edmonton. And I’m trying to put my life first, but then I feel guilty in my own life because I’m not there. There’s no win.
[Tea]
Definitely. In all the conversations that I’ve been a part of, respite care does come up very often. It’s like you said – if you’re not healthy, how are you supposed to take care of someone else?
[Naomi]
Not to mention, you don’t want to end up taking out the frustration or the pain or the exhaustion on your loved one. You don’t want it to start impacting that relationship as well.
In the beginning – I think there’s a common mistake, which takes time to learn – but you want them to be logical still. You’re trying to explain things to them that might not make sense in their mind. My mom was delusional. One of the things she would say is “I’m pregnant with Miracle babies.” She had a hysterectomy and I’m thinking, “Okay, you obviously can’t get pregnant.” So, in the beginning, I told her, “Mom, you’re not pregnant, you can’t get pregnant”, but she insisted that she was. I was to correct and help her see the logic.
Now I just go along with it, like “Great how far along are you? Is it a boy or a girl?” That’s also something I’ve learned helps alleviate the stress. You must start living in their reality. Your reality is done, you checked that at the door. It’s time to help somebody else. It doesn’t even have to be with somebody who has dementia. What about your aging parent? They might be stuck on a narrative that is just not even worth it to fight. If that’s what they want to think and it’s not harming anyone, more power to them.
[Tea]
This brings up an interesting point because I’ve gone through something similar with my mom too. It’s this approach of asking, “How do we make this topic a little bit more accessible?” I think using humour is a great way to break down that barrier. This is much more manageable when you’re approaching it in a light-hearted way.
[Naomi]
I agree completely. I’ve tried the other way of talking about the realities of it, and it does leave you a bit hopeless. So, I’ve certainly learned the best approach is to just go with it. Just go with it live in the present moment. That’s all you can really do.
It’s funny that you mentioned the humour thing. In December, I went to a 10-day Vipassana Silent Retreat. I sat there reflecting on all the years of doing this – you know, really facing the stuff in the quiet of my own mind.
At this retreat, I met another lady who was a stage director. Once we could talk, we got to discussing all the things I’ve been through with this disease, and she asked me, “Have you ever thought about improv or a comedy thing and trying to use humour?” So, it’s funny that you said that.
A goal of mine for this year is to do exactly that – put on an improv set and see what people would say if we could talk about this in a light-hearted way, but still get a strong message across in a way that would disarm people so they’re listening and open to what you’re saying. Just making light of an otherwise pretty sad and tense situation.
I don’t know why my mom has this obsession with children and pregnancy, but another time she was pregnant again. And I said, “Oh wow, that’s exciting. Who’s the father?” She told me, “Prince Harry.” And so I asked, “What did the queen think?” She’s like, “Oh, she’s supportive.”
You know, it’s just one of those things – whether you have dementia or don’t have dementia – who doesn’t think that’s hilarious? It’s ridiculous and hilarious. Even that right there allows us to just show people the realities, and sometimes you have to live in that reality – and that’s okay. So yeah, I agree. Humour is a great way.
[Tea]
I think sometimes humour can be a little bit tough because you don’t want to offend anyone. You don’t know how it’s going to be taken..
[Naomi]
But at the same time, this is my experience. And this is what I’ve gone through, and you don’t have to take it for anything other than just surface level, or the value of what it’s giving you or not. If it’s not giving you value, then thanks for getting up there and having enough courage to even talk about it, because it’s still tough. But I hear you. It’s a delicate balance, absolutely.
Leave a Reply