Tips to help simplify caregiving from a distance

Leanne Kaufman:

We all worry about signs of frailty in our elderly loved ones, but for those of us who don’t live nearby, you know how much additional worry can be involved. Families seem to be more geographically dispersed than ever before, and providing extra support to a loved one can be really especially difficult when you live far away. As the population in Canada continues to age, supporting loved ones from a distance is becoming increasingly common, a challenge for families. With more than two million Canadians providing care to seniors, it’s estimated that half a million of these caregivers live at least an hour away from their loved ones.

Hello, I’m Leanne Kaufman, and welcome to RBC Wealth Management Canada’s Matters Beyond Wealth. With me today is Dr. Adriana Shnall, program director at the Koschitzky Centre for Innovations in Caregiving at Baycrest,who amongst her many other qualifications and roles, specializes in the area of family caregiving and gerontology. Dr.Shnall, thanks for being here with me today to talk about caregiving from a distance and why this matters beyond wealth.

Dr Adriana Shnall:

Thanks so much, Leanne, it’s a pleasure to be here.

Leanne Kaufman:

So, why don’t we start with something many of us have experienced, the worry that comes from not being physically present on a regular basis to check in on our loved ones. What are some of the early signs that family members can watch for during the phone calls or the video chats or those occasional family gatherings that might indicate that their loved one needs a little additional support?

Dr Adriana Shnall:

That’s a very good question because it’s basically how do we assess that things are the way somebody tells us they are?

I’m going to talk about parents. For example, they never want to tell you that they’re struggling because they don’t want to impose any more worries on you.

The other piece of it is for those that are dealing with dementia, one of the hallmarks of dementia is that people don’t have insight into their problems. It’s different if somebody has a hip pain and has mobility issues and chooses not to tell you because they don’t want to worry you as opposed to if somebody is having memory problems, they truly don’t realize the extent of the memory issues. So, they can’t tell you, I need help because I’m forgetting how to manage my finances, for example, or I haven’t done groceries or laundry.

So, there’s ways over the phone that we could have these conversations, but in an ideal world, if there’s friends, neighbours, other relatives that live more locally, it’s good to check in with them to make sure that what we’re hearing and observing makes sense, and resonates with them as well.

So, for example, if you always speak to your mom, say eight in the morning, and then you call the next day at eight in the morning and she doesn’t answer, and of course you worry now because this is your pattern. Then she calls you later or you call her later, and she has no recollection that she missed that call with you. “No, Leanne, we always speak at eight in the morning.” Right? So, those are some small signs that as they become more and more frequent, we need to start paying attention.

And having said that, it’s very difficult to pay attention to those small details because sometimes we don’t see things in the people we love and we care for in the way that other more objective people do. So, neighbours and friends are probably good sources of information, better than family, because even our siblings, even if we have siblings that live locally, they may not see what’s happening or what they see is different.

Leanne Kaufman:

Yeah, I can imagine that to be true. And you make a good point about what you see and maybe what you want to see or what you don’t want to see.

So, they can, of course, though, the changes that might be happening would be particularly challenging to spot when you are at a distance and trying to often just deal on the occasional telephone call or whatever the case may be. So, from your experience, what are some of the more common challenges that you see families facing when they are trying to caregive or support an elderly relative at a distance?

Dr Adriana Shnall:

So, first of all, I just want people to realize that just because you live at a distance and you don’t do the day to day physical activities that are necessary to look after somebody, it does not mean that the guilt, the worry, and the stress decrease. It’s just different than those caregivers that live locally because they may have to do more physical things like take somebody to an appointment, do groceries, cook, clean, whatever those things may be. But we don’t compare pain and pain.

There’s a lot of animosity that’s very common amongst siblings, especially if one lives locally and one doesn’t because the responsibilities are different. Some are totally removed even when they live locally and it’s the child that lives afar that does most of it. There’s resentment around, “easy for you to tell me what to do,” son from California or brother from California “when you’re never here and you don’t really see what’s happening.”

Dynamics are very different in different families. So, the most important thing is to have a conversation, an open conversation with the family. Make sure that everybody’s on the same page. You don’t have to like your sister to still work together towards supporting a parent, for example. It takes work sometimes. Some families are able to put things aside to support the parent. It is difficult though.

The other thing is there’s agencies, some places, especially urban places have local agencies, some for money that you pay. Some that you don’t pay, although those are not very reliable these days—there’s just been a lot of cuts to our system that can support with some of that caregiving role. Depending where you live, the resources differ.

At Baycrest, we develop an app – it’s not an app yet, but it will be. Thank you to RBC, c-cart.baycrest.org, —where you can put in where you live or the person you care for lives, what the issues are, and it’ll lead you to resources that could be of help as well.

There’s always in Canada, 2-1-1 as a number that you can start by. It’s offered in over a 150 languages, 24/7, and it’s a good place to start as well for people, but situations are very unique.

There’s eight million caregivers in Canada.

Leanne Kaufman:

My goodness, so that’s people looking after kids as well as older adults.

Dr Adriana Shnall:

Yeah, but remember, when we talk about caregiving for kids, we don’t talk about parenting. We talk about kids with a disability or an illness.

Leanne Kaufman:

Well, let’s talk about some healthcare aspects. And I’m glad you mentioned C-CART, but I’m going come back to that a little bit later on.

What about the impact that geography and distance has on a family’s ability to help manage the healthcare decisions and manage the medical issues that could arise with their loved one?

Dr Adriana Shnall:

Well, in healthcare in particular, there’s been an increased use of technology, to do appointments to do family meetings. What I would suggest to people is that even though you may not be able to be at your parent’s, your sibling’s, whoever you’re caring for appointment with the doctors or the healthcare team, you could ask to be linked in by phone and WhatsApp, Facebook, whatever device or system you use. It’s become very common to do that.

So, in many instances, that’s opened up the opportunity that even though you’re not there, you can participate in those meetings because those are really important because what healthcare professionals say and what people understand are generally two different things. So, it’s helpful to have an extra pair of ears. Having said that, if we’re talking about older adults and parents, you have to get their permission to do that. A lot of people don’t want to really burden their children.

It’s not that they don’t want the children to know what’s going on as much as they feel you’re very busy and you have a family of your own and you don’t have time for me. But it’s helpful to have those conversations and explain to the person that you’re caring for from afar that it’s a way for you to know what’s happening, to be connected with the team so that you can better support.

Leanne Kaufman:

And maybe alleviate the child or the younger person’s guilt or anxiety or worry, and that might allow the parent to feel more open to permitting them to join in those meetings.

I mean, I’ve experienced this personally and I’m very grateful for how open the medical professionals have been to having people, like you said, dial in or join by, let’s do it all by link. It’s a game changer.

Dr Adriana Shnall:

Absolutely. It’s very helpful for healthcare professionals as well to have as many family members or people that help with decision-making and providing support as possible as long as families don’t start fighting. But it’s just also for the person you’re looking after, it’s this sense of feeling cared and loved that my busy daughter, in spite of everything she does in life, she’s making time to participate in the meeting with the physician because it’s an important meeting. And the message you’re sending is, “I matter.” That’s a way that you can provide care from afar in a meaningful way.

Leanne Kaufman:

You’ve touched on it a little bit already, but it can be very emotionally difficult. Caregiving generally can be very emotional, but the distance adds an additional layer of complexity and sometimes guilt and so on.

So, how does supporting a loved one from afar, in your experience, again, how do you see it affecting both sides of that equation? The person doing the caregiving and the person being cared for?

Dr Adriana Shnall:

So, the answer is, it depends. It depends on the quality of your relationship. If the relationship was a stressful, strained relationship, nothing’s going to change necessarily and things could get worse.

Having said that, this is an opportunity for people to make amends, realizing my mom said, this is the end, whatever the end is three months or three years or ten years. I’m not happy with the way our relationship is working or has been. It’s an opportunity to start again.

I think people need to understand that the guilt of not being able to be there can be overwhelming. And people feel this heaviness that I just can’t be there. I wish I could be there. I feel terrible. And that’s such is life.

So, trying to make time to have meaningful conversations or being there or supporting in whichever way you can is good. We all have abilities to do things in different ways. Sometimes when you have children that live in different places one may be able to support with finances in a way that the others don’t. Another one may be able to support with time. There’s maybe grandchildren that can do different things that live locally. It’s not a contest of who’s the best child and who’s doing the most for the parent. It feels like that because we all behave like five year olds when it comes to our parents. So, you know, when we talk about a role reversal that adult children feel, well, I’ve become the parent now, that is never true. We’re always children when it comes to our parents. And the way we behave with our siblings is as if we’re five years of age.

Leanne Kaufman:

You started to touch on some of the practical support and the community resources and I’m so glad you mentioned C-CART. I know that’s more maybe on the technological side, but maybe first starting with the analog, how do we go about finding local services to support our loved ones at a distance and access these from a distance, right? I mean, sometimes the support is local to the person needing the caregiving and the caregiver isn’t.

Dr Adriana Shnall:

Yeah. So, there are a few ways and it depends where you live in Canada.

• Urban places have a lot more resources than rural places.
• As I said, 2-1-1 is available over the phone or online. You can speak to somebody, either chat or speak on the phone 24/7 in a 150 languages. If you don’t know anybody, if you don’t have a family doctor, if you don’t know what to do, it’s a place to start.
• If you have a family doctor, or a healthcare professional, or a team that works with you, I would start there. They sometimes have teams they work with. They have nurses, social workers that may be able to start guiding you in the right direction.
• Some people go to their local priest or whatever religion or community they belong to as a place to start. That is very common for a lot of older adults.
• And some people go to their politicians, believe it or not. They go to their local politicians, municipal politicians, and they have, most municipalities have a referral source of some type.

Start with your family doctor or nurse practitioner or whoever you’re seeing, and then see where that leads.

Leanne Kaufman:

Now let’s talk about the technology. We talked a bit about how video and audio technology has helped support the healthcare visits. And actually on this podcast, we did a full episode on how technology can support both the older adults and their caregivers around some of the innovation that’s happening. But I know you’ve also worked extensively in this area, developing solutions that can help as well. So, what solutions have you found for caregivers?

Dr Adriana Shnall:

So, technological solutions are a double-edged sword because you may feel, especially at a distance, you can put cameras and all kinds of gadgets and door alerts that tell you what the person’s doing or not doing or systems for medication management.

The problem with them is they send you a lot of alerts a lot of the times, and you just become very anxious. “Oh, mom hasn’t gotten out of bed. Looks like she’s still in bed.” Or “she went to the bathroom and there’s no movement.”

 So, if you’re going to use technology, you need to be thoughtful about how it’s used – and we don’t have time to talk about it now – It is for some people really helpful, but you have to, as the caregiver, you have to be comfortable with the technology and it be something that is useful for you.

For example, if somebody falls, then that you have a plan because if there is no plan, then there’s even more anxiety. So, there was a study done in New Brunswick and London, Ontario, around people that were discharged from the hospital were given free technological supports to stay in the community. One of the difficulties was that when you’re in crisis, like you’re being discharged from the hospital, it’s not the time to learn the technology. People were not using it because that’s the last thing you need now.

So, what I recommend is whatever technology you’re going to use, start it when there isn’t a crisis because otherwise it won’t be helpful.

Leanne Kaufman:

Yeah, I think that’s a great tip. And assuming that you have a sense of what’s coming and you know which technology you might want to leverage, but you’re right. I can see how there’s already so many things going on that adding a new gadget that is just going to be a source of frustration. It’s not the right time.

Dr Adriana Shnall:

Yeah.

Leanne Kaufman:

So, I know we’ve mentioned C-CART a couple of times in our conversation and I just wonder if you could go a little bit deeper on how that app that you’re working on and will soon be available, I think to Canadians across the country, is going to be such a great resource for caregivers?

Dr Adriana Shnall:

Yeah, so first of all, thanks, Leanne. The system is available through your computers, laptops, phones right now, but it’s not an application yet and it’s c-cart.baycrest.org. What it does is through a series of 15 questions, it leads you to the right resources for you and also for the person you’re caring for.

Even if you’re living in different provinces abroad, because sometimes caregivers need different supports than the person you care for. So, if your parent lives in B.C., the services there are different than what’s available in Ontario. And you may need a caregiver support group for yourself, which is different than your mother needing help in the home.

Leanne Kaufman:

So, this is really focused on the caregiver?

Dr Adriana Shnall:

 And the person. It can get you supports for the person in B.C. and also for you as a caregiver. Think about it—if I’m stressed, just having mental health support is not sufficient if I know my mother’s not having help at home.

Leanne Kaufman:

– Right.

Dr Adriana Shnall:

It’s a combination of help for my mom and help for me that decreases my stress.

Leanne Kaufman:

That sounds fabulous. And we’ll point listeners to the website that you mentioned where it lives now, and then in due course, they’ll be able to see that app. So, we’re really proud to be able to help you bring that app to life and all the good work that you’ve already done at Baycrest.

One thing is always near and dear to my heart is the documentation and making sure all the legal documents are in order. Is there any advice you would give to listeners around the documents that are critical for managing health and personal care decisions?

Dr Adriana Shnall:

Yes, so, I’m not a lawyer. Please seek legal advice on this.  But what I want to say is that the difficulties arise when one sibling, for example, has power of attorney for personal care, a different one for property. And as the power of attorney for personal care, I decide that ‘I’d like my mom to stay home with 24/7 care in the home and I know there’s sufficient funds for that.’ My sibling, who is the power of attorney for property, may decide, ‘I don’t want to spend that money on 24/7 care, or if we do, it’s only going to last ten years.’ Even though our mother’s 95 already and unlikely to live for another ten years.

The problem is that if you make decisions for personal care, you have to be able to also have access to the funds to support those decisions, and that’s a source of struggle. Also, how powers of attorney are done in terms of, is it two out of three children that make decisions? Is it everybody has to agree?

 This is why I think it’s very important that you consult somebody that knows and that can advise you properly around how to set these up so that it reduces decision-making in the future.

Leanne Kaufman:

Yeah, great advice. And as I said, near and dear to my heart because that’s where we spend most of our time talking to people and clients is more around the documentation, but it’s important to see how the practical side and the legal or the way you’ve got it documented work together.

As we wrap this up, and I think there’s a lot more we could probably talk about caregiving at a distance and caregiving generally, but if you hope our listeners today remember just one thing from our conversation, what would that one thing be?

Dr Adriana Shnall:

I think be gentle on yourself. It’s really, really hard. It’s complicated. It’s fraught with anxiety—being a caregiver at a distance. There’s no easy answers and I’m not saying this not to be helpful because it’s more about giving yourself grace that this is hard what you’re doing. There is help out there for you. Avail yourself of that help that’s there.

The first thing you need to do is acknowledge that you are a caregiver. So, you’re not just the daughter. I’m a daughter providing care, and being a caregiver is stressful. And I’m entitled to get help for myself to continue doing this.

Leanne Kaufman:

Yeah, that’s really good advice. And we did a full episode on caregiver burnout and just that particular aspect of it. Well, I just want to thank you so much, Adriana, for joining me today to help us understand particularly these complexities involved with the long distance caregiving and giving us some practical solutions around the support options and why all this matters beyond wealth.

Dr Adriana Shnall:

Thank you. It’s been a real pleasure.

Leanne Kaufman:

You can find out more about Dr. Adriana Shnall on LinkedIn. As we’ve mentioned before, you can see the C-CART assessment tool at c-cart.baycrest.org or watch for it to come out on your app store.

If you enjoyed this episode and you’d like to help support the podcast, please share it with others, post about it on social media, or leave a rating and review. Until next time, I’m Leanne Kaufman.

Thank you for joining us.

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