Rhyannan

audio
Age at interview
59
Age at start of caregiving activities
57

Rhyannan (59 years) is single and has two grown children. She works part-time as a ‘death-midwife’ (she is one of two in Canada), assisting people through the process of dying. Rhyannan is one of three caregivers looking after the son of a recently deceased friend. Rhyannan’s care recipient is her friend’s son Tom who has advanced stage MS with dementia. Tom now lives in a long-term care facility. Even though she has a chronic illness (ME) herself, Rhyannan recently decided to become one of Tom’s caregivers as he does not have any family. Rhyannan is now his legal representative.

Rhyannan was a close friend of her care recipient’s (Tom) mother. When Tom’s mother passed away, Rhyannan was the one who guided her through the dying process. At that time she was already aware that Tom had MS. She also knew that he did not have any family, as all members of his immediate family had already died.

Rhyannan became involved in caring for Tom when she found out that he was admitted to hospital three months ago because of a broken wrist. After several tests it was clear that Tom’s MS had progressed considerably, and that his mental state was equivalent to mid-stage dementia. Tom was, for sure, not going to be able to return to his own apartment anymore. Rhyannan explains that she felt particularly frustrated when she found out that Tom had not arranged anything related to his care even though she had clearly advised him to do this at the time his mother had died. This means that there were no arrangements such as a representation agreement, an advance directive or a power of attorney.

Since there were no more family members and very few friends left, Rhyannan and another close friend and his wife were about the only people willing and able to take on the caregiver role. Initially she intended to try out her new caregiving role by assuming responsibilities for only one year. However, because of Tom’s mental and physical state, it was uncertain whether or not he would be able to make his own decisions in the near future. Therefore, Rhyannan decided to immediately assume full responsibility for his care.

Rhyannan explains that many responsibilities and worries have come with this decision. Through the first year, she has come to know, and work collaboratively with, Tom’s power of attorney and close friends. The caregivers are adjusting to their own ways of working, and Rhyannan is not certain whether the group will remain close, or in communication at all, once the illness has significantly progressed. Furthermore, Rhyannan worries about the extent of her own caring abilities, as she also has a chronic illness. In light of what she knows about herself, Rhyannan believes that she will grow closer to Tom  during the years to come, and that this may, in turn, affect her emotionally. Nevertheless, in spite of her worries, Rhyannan goes ahead, assisting Tom with his needs, and working to help other people through the process of dying or deterioration by caring for them, thus contributing to their quality of life.

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So what became obvious in the hospital was that he was not going to be able to go back to his apartment, and that he hadn’t made any arrangements, which is something I was personally a little frustrated with because I had talked to him about the problem with his mother not making arrangements and that he really should. So, the end result is that there’s nobody who has legal authority to make decisions for him. And as a result of that, a group of friends got together as a support group for him to sort of decide how we can share the responsibility of his needs. And, sort of, the end result of that right now is that we’re in the process of talking to a lawyer who is going to assess him to see if he is still capable enough to make representation agreements, where another person will take care of the financial stuff and I would take care of the health stuff.


The reason I think this story is important to include is because of the fact that arrangements weren’t made. There was no representation agreement, advance directive, power of attorney… and because of the fact that that… The family that actually was at all close is now all gone, and he’s 56 years old. And in our urban world, that’s going to become more and more the case because families don’t live in the same place and they are estranged, and for all kinds of different reasons we don’t have the sort of family community network that we would have had 50 to 100 years ago when somebody gets ill. And so, I think there’s going to be more and more cases where it’s a circle of friends that have to take over and figure out how to make things work for this person.

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The very first advice I would give is please, please people, do your advance directive, do your representation agreement, do your power of attorney. Because a lot of this stuff would have been clear and a lot easier to handle if our caregiving—the person we’re giving care to—had set this up in advance. And I just, again, working with people who are dying, I see so many situations where things become much more difficult. And, in fact, because his mother did not do these things, that it ended up being a legal battle over who had rights to make decision for her. And it’s just… we don’t need all of that happening when you’re dealing with the anticipatory grief of somebody who is dying or who is losing so much of their life, and their quality of life. 

The person we’re caregiving for is… I mean, it’s not that he’s dying yet, but he’s lost, I mean, he’s going through all of the grieving in himself as if he were dying. I mean, that’s the way he feels; he feels like he is going to die. So, get it dealt with beforehand, for your own sake, and for your family, and for your friends. And I guess, just that this is… I know that there are people out there who are the only person doing the caregiving for someone who is seriously, chronically ill or dying, but it’s a hell of a lot to handle as well as your own life. And especially, I think, when dementia’s involved, because you’re constantly having to try and move through the confusion and the contradictions and try and figure out what it is that they really want and whether it’s possible to give it to them. And so, I don’t know. I mean, I don’t know how in the culture we can support people who don’t necessarily know each other but who are friends of the person that needs the caregiving, to come together and work as a group. And perhaps, that would be facilitated through these specific roles of power of attorney and representative. I mean, those people end up having to work together.

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Well, there’s a place inside of yourself, in the sense of your own self worth, to be able to address a need that’s out there—and such a critical need. Often this isn’t just making soup for somebody because they’ve broken their leg and they can’t cook right now, right. I think the most important one is learning compassion. Especially, I think for me, around 2 things: partially the dementia and the compassion allowing or helping you to listen through the actual words—what’s the message behind it? What’s the real need that’s happening at this point? Because you can’t argue things out, and you can’t convince people who have dementia, right? It just doesn’t work. So you kind of have to just keep in yourself going, “Okay, what’s behind this? Where is the real need and how can I meet that need?”

And […] there’s another part of that compassion for me as well. It has to do with empathy. I mean, I really love the word compassion because it means together in passion, right? And so, you’re stepping into a place where you’re sharing what is passionate for somebody else. And in a caregiving situation, I mean, sometimes that would be around really joyous things—children and grandchildren and, and whatever that person’s particular passions were—but a lot of the time it is around their fear. The passion around their fear, their hopes for their lives that have been removed, have been taken away by their illness.

Yeah, and for me that’s the most important thing—of being able to sort of walk into that place as much as possible with them and understand what the need is behind it […] and—maybe if it’s a sort of funny thing to say—is the best part of it. But I think, especially in this situation because our caregiving person is not somebody that I was a personal friend with, what I benefit from in doing this is my own growth and compassion.

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I know that there are people out there who are the only person doing the caregiving for someone who is seriously chronically ill or dying. But it’s a hell of a lot to handle as well as your own life, and especially, I think, when dementia’s involved. Because you’re constantly having to try and move through the confusion and the contradictions and try and figure out what it is that they really want and whether it’s possible to give it to them. And so, I don’t know. I mean, I don’t know how in the culture we can support people—who don’t necessarily know each other, but who are friends of the person that needs the caregiving—to come together and work as a group. And perhaps, that would be facilitated through these specific roles of power of attorney and representative. I mean, those people end up having to work together. But I guess, I would really encourage people to, if at all possible, have that circle of friends from the person who you are caregiving for, because there’s going to be so much that one of them will know that the others won’t know.

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Well there’s a place inside of yourself, in the sense of your own self worth, to be able to address a need that’s out there—and such a critical need. Often this isn’t just making soup for somebody because they’ve broken their leg and they can’t cook right now, right. I think the most important one is learning compassion. Especially, I think for me, around 2 things: partially the dementia and the compassion allowing or helping you to listen through the actual words—what’s the message behind it? What’s the real need that’s happening at this point? Because you can’t argue things out, and you can’t convince people who have dementia, right? It just doesn’t work. So you kind of have to just keep, in yourself, going “Okay, what’s behind this? Where is the real need and how can I meet that need?” And […] there’s another part of that compassion for me as well. It has to do with empathy. I mean, I really love the word compassion because it means together in passion, right? And so you’re stepping into a place where you’re sharing what is passionate for somebody else.  And in a caregiving situation, I mean, sometimes that would be around really joyous things—children and grandchildren and, and whatever that person’s particular passions were—but a lot of the time it is around their fear. The passion around their fear, their hopes for their lives that have been removed, have been taken away by their illness. Yeah, and for me that’s the most important thing—of being able to sort of walk into that place as much as possible with them and understand what the need is behind it […] and—maybe if it’s a sort of funny thing to say—is the best part of it. But I think, especially in this situation because our caregiving person is not somebody that I was a personal friend with, what I benefit from in doing this is my own growth and compassion.