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Practical Insights for Busy Caregivers

Encounters with health care providers and the health care system

When someone close to you has a health condition and you step in to help, strangers begin to enter your life, in the form of health care providers.

Eileen Cunningham

"Not always do they look at the whole picture and what that would mean for the individual and/or family." - Eileen Cunningham, caregiver

video (23 sec)
transcript

One of the observations I made that… and it’s generally about the health care system… is that everybody wants to heal. Everybody wants to make the patient, the client better. But not always do they look at the whole picture and what that would mean for the individual and/or the family.

Kristina McLaughlin

"...discharge is probably the most frightening word that people hear." - Kristina McLaughlin, care coordinator

video (1 min 19 sec)
transcript

Yeah, so discharge is probably the most frightening word that people hear. And most of the time it’s because they haven’t had the experience doing what they need to do. So, when it comes kind of close to that time, I always get a heads-up that we’re getting there, so I will connect with the family and just say, “Now’s the time to ask those questions. I know that when you came into the hospital, someone came to you and said these are things you’re going to want to ask later. Now’s that time. If you need to sit down with the whole team, then ask to sit down with the whole team. Tell me right now when I can make that happen, or there’s a social worker on the unit who can also make that happen. There’s a doctor around every day. Anyone you see, ask to sit down with them and… to know what they’re doing.” A lot of caregivers will feel really daunted by the idea of having to transfer and move and help their loved ones with everyday things. So, I ask them to be there when everyday things are happening. A day in advance. Two days in advance. A week in advance. Whatever they think they need so that they can see it happen. And after they’ve seen it happen, to get in there and do it and say, “You’re the nurse today, so be the observer. Let me try. Let me be part of this.”

Gord Schacter

"being prepared for a visit's important, thinking about what questions you want to ask, what are the issues" - Gord Schacter, family physician

video (50 sec)
transcript

The caregiver coming to the physician, you know… not that I say I want everyone to bring in lists, but I think being prepared for a visit’s important, thinking about what questions you want to ask, what are the issues, beforehand. And whether it be making a small list that allows you to address those issues, it just makes the visit more efficient. And the reality is that we only have some much time that we can provide people. And we try… You know, me as a provider I try to ensure that I don’t limit people to that time, but it’s just that… and sometimes we have to find ways to properly time manage based on what’s the important issues at hand. And often the important issues are what the caregiver or the patient has at hand. But we have to sort of find that balance, and that’s just the reality of how health care works. So…

Eileen Cunningham

"...the best information that I was able to get when Michael was in the latter stages was through the nurses." - Eileen Cunningham, caregiver

video (34 sec)
transcript

What was interesting was that the information… the best information that I was able to get when Michael was in the latter stages was through the nurses. They were very, very involved in his care. And they were, I found to be, the most empathetic and the most communicative when it came to give information. Some of the doctors were fine. Some were not so fine, but…

Louise Milligan

"...that landed him in psych ward, and they labeled him violent. For me to see that was really hard, because he wasn’t violent." - Louise Milligan, caregiver

video (1 min 33 sec)
transcript

My experiences in the psychiatric ward were scary, very scary. At one point, Gord was – this is when he was in the assisted living – he had… he was a wanderer. He would wander into anyone’s bed. It didn’t matter if anyone was in it or not. It was a bed, he was tired, he would lay down. At one point, there was a woman in this bed, and he laid down with her. And she – rightly so – totally freaked out, as I would too. And he didn’t respond well to her freaking out. So, it was a bit of a… I don’t know… pushing back and forth, tussle, assault. I don’t know what word you would use. And that landed him in psych ward, and they labeled him violent. For me to see that was really hard, because he wasn’t violent. He didn’t have a violent bone in his body. I had to keep reminding myself, “This is not him. This is the disease.” It became my mantra. “This is not him. This is the disease.” So, if you are faced with something like that, it’s not your wife or your husband or your father or your mother, it’s the disease. And if you can kind of remember that, it makes it a little bit easier then to be able to be the advocate for that person. To say, “No, he’s not a violent individual. This is an episodic thing that happened with the disease.” Right? Because people react differently when they think you’re violent. Right? And so that, to me, was an eye-opener. It’s something I wish no one ever has to go through, but sadly we do with dementia.

Cheryl

"...they didn’t take that as a definition of harm to self or others, which was infuriating to me…" - Cheryl, caregiver

video (1 min 4 sec)
transcript

“And at this point in time, 3 days had passed and I had documented everything because I had challenges with people – when I say people, like resources – not necessarily taking me seriously, but understanding this was an issue. So I took her in and of course they asked if she was a harm to herself or others. And I said, “Yes.” And they said, “Well, why?” And I was like, “Well, she’s threatening to get into her car and drive 3 hours to Toronto to ‘rescue’ me. If that’s not a harm to herself or others, then I don’t know what is. Is she suicidal? Is she threatening to kill herself? No. But she’s threatening to get into a vehicle and drive in an altered state of mind.” And they didn’t take that as a definition of harm to self or others, which was infuriating to me because I didn’t understand how that does not fit into the definition, because if something were to have happened along the 401, then what?”

Eileen Cunningham

"I think people are generally reluctant to be as assertive as they might be. Because they’re afraid that they’ll compromise the service that they’ll get." - Eileen Cunningham, caregiver

video (1 min 59 sec)
transcript

I think people are generally reluctant to be as assertive as they might be. Because they’re afraid that they’ll compromise the service that they’ll get. I think it’s important to be assertive and to take that responsibility to look after your loved one as best you can. I don’t believe I did. I think, because I was so entrenched in the system, I didn’t want to offend anybody, I didn’t want to push too hard, but I think I could have. I don’t think it would have changed the outcome, but I think that the communication – in this case with the transplant team – could have been a lot better if I had pushed. But here in London we’re working in a very academic environment, so there are many, many players within each specialty. So… we were only at the hospital for twice a week, and generally speaking we didn’t see the same people, you know, on consecutive visits. So, I think I could have been more assertive in making sure that the communication was tighter. And I would recommend to anybody in the system to try and find out your point person in the system who can give you that information, so that you’re fully informed. Because I don’t think I was. And I don’t think the result… I think Michael didn’t want to be informed as much as I wanted to be informed. So… but I was with him at all his visits. But definitely make sure you ask the questions. Don’t be afraid to ask the questions. And if you do that, you’ll find the people who’ll talk to you.

Gord Schacter

"When I think of some of the issues that we had with my sister-in-law" - Gord Schacter, family physician

video (1 min 50 sec)
transcript

When I think of some of the issues that we had with my sister-in-law… it’d be four years ago… and… So, she was – I don’t want to put too many details into it – but, you know, she was living in Windsor. She developed a brain tumour. So, it was quite devastating, quite a quick diagnosis. And myself being a physician here and my wife historically being in health care being here, and we knew London. We said, “You have to come to London. You have to come here.” So… But having, you know, she ended up having four surgeries over three months… even us in health care, we saw the system break down at times. And even me being a leader within health care, I knew who to call to get things done, but I ‘m thinking, “But what if we didn’t have that advocacy?” The other thing that was really interested was that, having had a brain tumour, having had brain surgery, they had to cut some of her hair off. So, it’s like half her head without hair, or she cuts it all off. And it just happened that one day my wife was standing in the cancer clinic, was talking to someone that she knew about, and this young girl tapped her on the shoulder with her mother and said, “I heard what you’re saying. Do you know that you can actually get wigs? There’s a foundation that the cancer clinic has that supports the funding for that.” And we didn’t even knew it existed again. And it was just… it was like, this young girl, who was obviously a chemo patient was wearing the wig. She felt it was her need to pay it forward. And it’s still something that… it’s emotional. For my wife and I, we felt it was important. So, now we… that’s where we’ve made a big donation to the LHSC Foundation, the Cancer Care Foundation for particularly that part of it, because Judy benefitted from it.

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