Most caregivers we interviewed accompanied their care recipient to medical appointments and communicated regularly with healthcare professionals about care, follow-up, and future decisions. The approach and manner with which professionals interacted with the care recipient and the caregiver often had a big impact in many caregivers’ lives and perspectives on their relationship with professionals. Most caregivers had experienced positive encounters with healthcare professionals, although most caregivers also experienced negative encounters. Several caregivers had an experience with what they felt was a misdiagnosis, wrong treatment, or they disagreed with the approach of the healthcare professional. Several caregivers described how they improved their interaction with professionals over time.
Positive experiences with professionals
The majority of the caregivers we interviewed spoke about a positive interaction with one or more healthcare professionals. In some situations, caregivers continued to be extremely grateful about a professional that helped them through a challenging moment. Fernanda said, “I’ve had some wonderful experiences in which this doctor, when I was at the end of my rope not knowing how I was going to help my mother, and when he said, ‘It’s time. You’ve done your part. Now it’s time for us to do our part.’ I mean, how do I ever, ever, ever thank that doctor for what kindness he showed me?”
The doctor started telling me I had to start taking holidays myself. I couldn’t be thinking about not doing it because I felt guilty or because it was difficult. And the longer a holiday that I take, the more work and preparation and arrangements I have to set in place in order to go away. But the doctor made a point of saying “You need to get away at least every three months.” And that was good to hear because I came back and I said to my husband, “I have to get away every three months.” And he was, “Oh, that much? That often?” And I kind of thought, “Ooh”—guilty. But the fact that it had come from the doctor made me more able to say it without feeling too guilty about it. And I really came to believe that in order to survive this, and not kind of throw up my hands and say, “I can’t deal with this anymore,” I had to be able to do some of the things that I really wanted to do and wasn’t able to do with him anymore. So, I’ve started going off on some other trips—not just visiting my kids but… I went with my brother on a couple of short trips in the past couple of years down south in the winter—just to get away in the winter and just to try and do something that felt normal.
It came to the point where we had this appointment with the doctor and I remember we were in the, like, in an office probably a little bit smaller than this room, with my dad, my mom, myself and the doctor, and they basically gave us the option of amputation.
The same as with your doctors. You go, I mean, now we are going together because it’s just a bit easier to see [my doctor]. I’m just getting my blood work and she’s getting her blood work, but we work very close together. But yet, I work very closely with him. I don’t discuss my wife when I’m alone with him, or her with the doctor about me.
Impact on caregiver after negative encounters
Although the majority of the caregivers had positive experiences with healthcare professionals, there were also negative incidents. And as David said, “The problem with negative experiences is that they linger on with you.” Examples of negative encounters most frequently involved doctors who lacked an understanding, painful or insensitive remarks from healthcare professionals, or when healthcare professionals seemed to have unrealistic expectations of what the caregivers should do.
They wanted us to do things like—we never got to this point okay—but when we’re having this discussion about whether I can care for him at home, one of the things they’re wanting is, “Well, he has to go get intravenous from time to time, okay?” So, when we’re having this discussion about whether he can come home, “Well, he’d have to come and have intravenous.” I said, “Okay, so how do we do that?” “Well, you have to drive him to daycare”, 45 minutes! This very sick person. Then he has his intravenous. Then you drive him home, and then you drive him back later in the day because he has to have it twice. That’s not going to work. How’s that going to work? Take a look at this guy. Or then he sometimes has to have blood transfusions because—I’m not sure why—they think he’s bleeding somewhere but they can’t figure it out… well, they can’t do the tests to figure it out. “So, blood transfusions,” I said. “Okay. So how does he get the blood transfusions if he’s not admitted in hospital?” “Oh, you drive him down to daycare in [city in BC] and we give him a blood transfusion for 4-5 hours, depending how many units he needs, and then you take him home.” And I’m like, “Oh yeah, that’s going to work…” So then, one doctor says to me, “Well, maybe you need to move to [city in BC].” I said, “Sure, I’ll get right on it.” And that’s one of the issues of living here.
So we went the path of going to the doctor, who sent us for further tests, sent us to a neurologist. And one of my horror memories is that the neurologist diagnosed my husband over the phone. My husband called him and asked him—now my husband did pressure him too for it—and he said, “Well, you come in and we’ll talk about it.” But in the end, he did tell him the diagnosis of MS over the phone. And because his personality was suggestive, I saw the deterioration within 5 minutes. He had been on the phone, he had walked, and all of a sudden he couldn’t master things that he had done just a few minutes ago. So obviously, it’s a pet peeve of mine that that should never be done to anybody. We had a wonderful family doctor who talked him through, kept him upbeat, and he actually drove to the appointment with the neurologist. We went into his office, the neurologist sat us down and said, “I concur that you have MS.” And I said, “We’re really very frightened. Could you spend some time explaining it?” And he said, “No. Get a second opinion if you want more information.” This was a top neurologist, and the awful part of that to me was my husband, who had driven down could barely make it back to the car; there was no way. I had to help him into the car, and it just showed me how, yes, you may have a disease, but your mind is still in control for positively or negatively. And it was downhill from there. And I think if it had been handled differently, the results would have been different. We saw a neurologist there who concurred with the diagnosis. But the difference was—I still remember this—he sat us down and he said, “You have waited for your turn, you will not leave this office until you have a handle on your disease. You will have my phone number; if you have any questions call.” And I think, the way my husband was handled by that neurologist enabled him to continue working and made such a difference, and it always left a huge impression with me on how a doctor handles the diagnosis has a tremendous, tremendous effect on how the person copes with what they’re coping with.
And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I was there. And she starts telling the doctor, “ I feel worse, I have more pain and all that.” And the doctor says, “Yes, yes…” And he does his exam, and asks her this question, he says, “Are you ready to go home?” Yes! That’s it! I had a reaction, “What is this? Did he listen to anything this doctor?” It gave me a strong enough reaction and I talk about it and it still has an effect. And then at that moment, well… she said, “No, not really.” He said, “Yes, we will try to keep you still, but… ” in any case. And then, she needed her personal effects, some stuff for work as well, so I went back home to come pickup what she needed. And I went back to see her, but I was at that moment in my transit of… leaving the hospital, going home, and returning to the hospital. Like, I was having an emotional reaction… but really very…
We were at a hospital and I was assisting—I was sitting-in in a meeting with a nurse—and I had a cup of coffee for myself and my wife in one hand and I had something else in another hand and I got up to help my wife get up from the chair and told my wife, “I can’t grab your hand because my hands are full.” And the helping person who was there and the medical person said to me, “Ah you men, you cannot multitask as we do.” And I didn’t really appreciate that. Considering that the night before I had been up maybe a couple of times because my wife had fallen. And I just thought it was totally uncalled for. Now, this is one small detail and, of course, as you get more and more tired one becomes more vulnerable. So, I don’t want to blow this out of proportion. This is just like one incident out of dozens of more positive experiences. But just, the feeling I have is that caregivers are just not, we’re just not that important; we’re an invisible minority. And so, if I can help give a voice to this invisible minority, then so be it.
Disagreements on diagnosis and treatment
Several caregivers had disagreements with health care professionals for different reasons. In some cases, it was felt that the care recipient didn’t receive the right treatment or that the healthcare professional didn’t believe or acknowledge what care recipients or caregivers were saying. Caregivers also sometimes felt that their care recipient needed something different from what was offered or provided.
But one of the things that they did was they had, they had [an associate doctor]. He was working the nightshift one night and he suggested that they should just take out the shunt to help get rid of the infection. And we thought that was a really, really bad idea because if he had a shunt, he must need a shunt. And this doctor said “Well, that’s not necessarily true.
The doctor we dealt with when my husband was first diagnosed, he gave my husband a name of [a diagnosis called neuritis] that he could say he had, and I felt that he was wrong. And I confronted the doctor, and the doctor said “I can’t go into it with you without him.” And I was concerned that it was something worse than what he was describing as an illness. So, he said “Then, I have to meet with both of you.” So, he told us that he believed it was MS, and the reason why he didn’t tell my husband that was because of what he thought his reaction would be. And he was right. It’s almost an instant reaction. He’s going to go downhill quickly. He’s been diagnosed with this chronic illness and it’s going to affect a lot of things. And he was like that. When he got a cold, it was the MS. When he got a sore toe, it was the MS. It was all blamed on the illness no matter what it was, even though it wasn’t related to the illness. So, I understood that part of it. That was just his regular doctor.
One of the problems I have, too, with his condition is his pain is getting worse and worse. And we get no support even from the doctors because they say a lot of the pain killers are addictive and they don’t want him on them, which I don’t understand because, if you’re in that bad of pain, just to suffer constantly is insane. Who cares if he gets addicted if he’s got some kind of comfort? But, I mean, he’s in terrible pain at times. I don’t understand that at all. I’ve gone to his doctor and got really mad at his doctor and said, “Why won’t you give him anything?” He says, “Well, he’s got an addictive personality and na, na, na, na.” I don’t understand it. Why they would allow somebody to suffer as much as he’s been suffering in the last while, it makes no sense to me.
Can you describe how that feels when you are there as a caregiver in that position and you feel you don’t get any help?
Oh angry. Angry, frustrated. I mean, I went in and screamed at his doctor—my husband got really mad at me. I just got so frustrated with the lack of care. They just didn’t care. It’s a lost cause as far as they’re concerned. They put no effort in, they don’t have any help. I just get so fed up with them. And so now when I go to the doctor’s, I won’t even go in with him to see his doctor he makes me so angry. I just sit in the waiting room because I know I’m going to be negative. So he doesn’t, my husband doesn’t like that. So, I don’t even go in; I just get too frustrated with them. And there’s nothing you can do about it. There’s no point in even getting angry at them because it doesn’t do anything. It does nothing. I find that really frustrating.
Dealing with disagreements with healthcare professionals is challenging for most caregivers. It sometimes caused anxiety, anger, frustration, and reduced trust. Rachel said, “The woman who works at the MS Society here in BC, who originally diagnosed my mom with ALS, has never really gotten over, I think, the misdiagnosis. She’s always trying to prove my mom wrong in some way. So that has been beyond frustrating.”
The caregivers we interviewed had different approaches to deal with challenging encounters with healthcare professionals. Overall many caregivers tried to find ways to work together with the healthcare professionals to provide the best care for the care recipient. However, on several occasions, caregivers decided not to argue with the healthcare professional even though they disagreed with their final decision.
I remember when my dad was diagnosed—and I sort of knew he was having seizures because he had had a couple of small accidents where he had seemed very confused, and I didn’t know anything about a seizure disorder that wouldn’t show up on a brain scan, that wasn’t like epilepsy and obvious.
And my social worker tells me, she says—because at one point, I found, I knew that there were employment service vouchers, because you can hire someone who has the expertise, for example, to take care of your husband, and who is paid by the… by the CLSC. It’s me who discovered that! Through talking, like word of mouth, you know. And when I spoke to her about it, she said, “Ah!
The first doctor, in fact at first, my husband was not at ease with him; he didn’t really like him; thought he was too cold. And he went to him and spoke to him and said, “Look, I’m not patient #1235. I am a person; I am not a statistics. So, I would like you to treat me as a person.”
He said that?
Most caregivers prepare well when they go to their health care professional. Jacques, for example, has everything ready when he meets the neurologist: “When I get there, I have my daughter’s annual report. The whole year is there with all the remarks. I have been doing this for 10-15 years for sure. It is a big help and I think it is good advice for parents—when you go to the doctor, be prepared.”
I think every youth caregiver has their difficult moments with the medical, like the doctors and hospitals. I understand that the home healthcare network is under a lot of stress and I respect that, but I think when you come into somebody’s space there has to be tremendous respect.