Every couple of weeks I have the pleasure of joining Adrienne Pan, the co-host of Radio Active on CBC Radio One. You can listen via AM740, FM93.9 (in Edmonton), through the CBC Listen app, or via the web on Radio One at CBC.ca. Today we’ll be on at 5:20pm.
Once the show has aired, if there is an audio version available I will add a link to it here. A listing of all of the columns is here. For those without audio versions, I will attach a transcript of the column to the bottom of this post after its airing.
COVID-19 has exposed a lot of weaknesses in our care of the elderly. This has lead many more people to consider taking on caregiving themselves. While it can be an extremely rewarding role, we should make sure we take it on with a full understanding of all that it might entail.
If you’ve never heard the CBC Radio Active show before, I’m sure you’ll enjoy it. They have a great team.
Take care everyone. Here’s to a grateful day for all of us.
Adrienne: COVID-19 put a spotlight on the crisis in senior’s care. And that has more and more families considering caring for loved ones at home. But what does that really entail? Today– we’re joined by our Wellness Columnist, Scott McPherson to talk about the strange challenges, and surprising rewards, associated with caregiving. Hi Scott!
Scott: Hi Adrienne!
Adrienne: So, this is a decision you’ve actually made isn’t it? How long have you been caring for your parents?
Scott: A little over 10 years now. I started when my Dad’s dementia first got challenging for Mom. It started off with just groceries and cooking, and then slowly ramped-up to the point where I at least try to keep up with everything. Everyone doing this is in a unique situation, but this is more about how we can view any of them from a mindful perspective.
Adrienne: So I take it there are things you’re mindful of today that you wish you knew when you started off?
Scott: For sure, which is the real reason for discussing this today. I did a lot of reading and research on how to approach the role. And it helped a lot. But there’s no better teacher than experience. Today, if someone’s even considering taking on that job, I wouldn’t recommend it until after they’ve talked at length to someone who’s actually done it. Especially where dementia is involved. I don’t want people to get the wrong impression. Because caregiving is the most rewarding thing I’ve ever done. But it’s also the most difficult. And in really surprising ways. So if we’re going to do it, we not only need to make sure we’re the right kind of person for the job, but we also need to know what the job really entails so that we can properly prepare for it.
Adrienne: What’s the first thing we need to consider?
Scott: Aside from the basic stuff, like who is living where, and what special preparations need to be made to the physical space; the first question we should ask ourselves is about how we define the idea of ‘caregiving.’ Because it goes in stages. So, before we’re in the situation and the tension is high, we’re better to calmly figure out how far down the caregiving path we’re planning to travel. Then, when we hit our limit and hand things over to a care-home, there’s less guilt. But up until we reach the point where we hand things over, each stage of care does feature its own unique challenges and rewards. I find that, once some people have heard the challenges described in more detail, many people change how far they think they can go. And others hear about the rewards that go with each stage, and a lot of them find they can go farther than they had originally thought they might.
Adrienne: How many stages are there, and what constitutes the first one?
Scott: There are roughly three stages. The first is the domestic stage. This starts with just helping with groceries and around the house. Over time, the care eventually evolves into something akin to being the parent of a tween. They can largely look after themselves, but they can need to be driven around a lot. And they can be known to fall into very lazy dietary and grooming habits if no one is watching. At this stage the job is mostly housework and the vigilance to watch for when they’re entering Stage Two.
Adrienne: You had said each stage had its challenges and its rewards. If domestic help is the first challenge, what’s that stage’s reward?
Scott: As odd as it might seem, it’s a strange kind of friendship. Or, if we’ve historically had an issue with a parent, we can at least reach a place where there’s a kind of healthy, respectful detente, if not a friendship. No matter where the relationship starts from, the daily familiarity lowers everyone’s guard. And because the child is now an equal adult, and because the parent is now parenting from a position of need, that can allow us to see our parents more the way their friends see them. And that can be a lot of fun. It can spawn a whole new kind of relationship with them.
Adrienne: And how do we know we’re leaving Stage One for Stage Two?
Scott: That’s when the care shifts to being less about where they live and more about how. So, we’re still handling groceries and meals and maybe driving. But by Stage Two we might also add some grooming or some intimate care. Fortunately we get used to the gross stuff a lot faster than most people would suspect. On the responsibility side, just due to memory or comprehension issues, we may have to start attending doctor’s appointments. And we often have to have challenging conversations, like getting them to give up driving. Or use a cane or a walker. Or to wear a diaper, or accept home care for their morning grooming. Those are some of the hardest kinds of conversations. Those feel like losses of identity for our parents, and that can lead to some pretty challenging arguments. That’s why it’s important to approach issues with an effort to try to understand what each decision means for them and not just for us. The complexity and emotional challenges that go with Stage Two can fairly be too much for some people and that can get in the way of their ability to give care. If that’s the case, it’s a wise and generous decision to place the person with professional care.
Adrienne: And what is the reward for those that commit to staying for Stage Two?
Scott: This one’s harder to describe. But when people are forced into situations where they are completely vulnerable, and you can help them feel safe, there is unique connection that happens in that moment. That’s where the parent-child dynamic switches direction and the parent surrenders –at least to some degree– into trusting us the way we trusted them as kids. As a kid, it can feel really good to be trusted that much by our parent. That can feel like such an honour. And there can be strange little joys hidden in Stage Two. Even with things like dementia. So, for instance, a lot of experts have found that, with sliding memories, it’s better to just meet the person where they are. It’s a bit like improv, and can really be fun. So, my mom’s still pretty clear-headed. But just the other night she woke up after having a dream, And she was talking to me like we were two ten year old’s in a schoolyard. She told me really wonderful stories about herself, and her brothers, and her parents. It was all really cool stuff that I’d never heard before. By relaxing into the time and place where she was, I got to have what was probably my all-time favourite conversation with my Mom –as she was at 10 years old. Even her mannerisms were child-like. It was so sweet.
Adrienne: And Stage Three?
Scott: Stage three is a much sadder phase when a lot of the joy in life just can’t happen. It’s really a part of palliative care, and we hope it doesn’t last too long. At that stage, the caregiver’s satisfaction is mostly derived from the basic comfort we bring. But at this stage feedback can be minimal. That’s why a lot of people stop here to hand over care to a care-home. Otherwise, people will often see their loved one’s suffering as a form of care-giver failure, which is why I prefer it when people are prepared. We all hope for a peaceful ending and that is what most people get. But if we’re going to take this job on, it’s really important to be realistic about how hard and unexpected some aspects of this journey can be. No matter how it goes, we’ll survive it and grow from it. But we should go in with our eyes open.
Adrienne: And if we are the sort of person who would stay right up until the end, what is the reward that goes with making it that far?
Scott: A lot of people have regrets when family members die. But in my experience, the caregivers who look after them almost never do. There’s just too much evidence of the love they gave. Rather than being tortured by their parent’s decline, most caregivers finish with a sense of pride and accomplishment. Even though it ultimately involves infirmity and eventually death, that kind of self-less caregiving is possibly the most life-affirming act I know of. People should go into it well-informed about the emotional aspects. But that doesn’t mean it can’t be one of the most profound experiences of our life.
Adrienne: Thank you so much for sharing this with us.
Scott: Oh, it was my pleasure.
Adrienne: Scott McPherson is our wellness columnist. He teaches mindfulness at relaxandsucceed.com, here in Edmonton.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.