Interaction with professionals
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 many 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?”
When her doctor told her she needed to start taking holidays, Marlyn found it much easier to take regular respite.
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 one of the most difficult moments, Kai and his father met an excellent doctor who was honest and made Kai feel included.
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. […]
Mike describes what he appreciates about his interaction with the specialist.
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 […]
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.
Being expected to do things that you are unable to do is frustrating for Rowdyneko.
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 […]
Shayna describes two negative encounters with health care professionals that had an impact on her husband’s ability to deal with his illness.
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 […]
After a negative encounter with a doctor at the hospital, Joseph experienced a strong emotional reaction.
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…
David felt a nurse’s off-the-cuff comment was totally uncalled for.
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.
Sheni describes two occasions where she had a disagreement with the doctors.
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 […]
Shoshana disagreed with the diagnosis her husbands’ physician had given him, but later found out why the doctor had been cautious about being straightforward.
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.
Anne is frustrated with the lack of care her husband receives, and no longer accompanies him to see the 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, […]
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.
After a disagreement with her father’s physician about his ability to drive, Barbara’s father had a seizure while driving.
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 […]
Christiane told her social worker about a solution she found herself.
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 […]
Hélène’s husband asked the doctor to treat him not as a number but as a person, and since then they get along really well.
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. […]
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.”
Kai suggests that healthcare professionals get to know their patient and family, especially when visiting their home. Get to know their likes and dislikes, and how they like things to be done.
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. Especially… and […]
Review date: 2019-09