Caring for someone who can no longer do everything themselves may sometimes mean becoming involved in legal, financial and/or healthcare matters to make decisions on their behalf. Caregivers also sometimes require legal advice on particular matters regarding their own rights and responsibilities. Some of the people we interviewed spoke about legal issues related to caregiving. They found themselves learning about terms such as power of attorney, health care directives, living wills, and representation agreements. Such legal issues can be confusing or difficult to understand. It is highly recommended that you obtain professional advice from a lawyer, notary, bank manager or other advisor if you need help understanding the issues. You may want to clarify your role or the options available to you when your care recipient becomes mentally incapable of looking after themselves or their affairs.
Many different legal terms were mentioned in the interviews, some of which are specific to different provinces. We have provided a list and brief definitions of these terms in our Description of Legal Terms Document and you can visit our Information and links where you can also find other resources on this topic. In the section below, you can read about the experiences and messages from the people we interviewed with regard to legal issues.
Legal issues experienced by caregivers
Caregivers spoke about being confronted with the need to make legal arrangements for issues such as power of attorney, a living will or health care advance directive, or a representation agreement. Several caregivers had power of attorney for their care recipients, meaning that they had been legally appointed to manage the care recipients' business or property and to make financial, legal or healthcare decisions on their behalf. Alyce, for example, has power of attorney for her husband who became unable to make his own decisions. Drew, on the other hand, is the legal guardian of his mother, which means that he is responsible for decisions with regards to her health and healthcare.
In my situation, as far as the alternatives go, one of the things we’re pretty good at doing is recognizing—not only because we’re committees, so we have a fiduciary duty as our mother’s legal guardian to make decisions in her best interest, but also because I don’t want to lose sight of the fact that I’m not perfect—there may still come a time when what we’re able to provide for her isn’t the
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.
Like me, I didn’t have him sign a mandate in case of incapacity because, again, it costs money, and it’s takes time. A mandate, you know in the end, when you are at the hospital, the doctor can tell that this man is not capable of staying on his own. Why do we have to go through the Court, then this and that, and then it costs you the fees. They told me it could cost as much from $1200 to $1500 to homologate a mandate of incapacity. But, to date, he lets me, “If you say so.” But he could… like if let’s say he got sick, I call the ambulance, if he says no to the ambulance driver, he’ll leave him here. And that, automatically when you need a caregiver, the caregiver should have certain powers. You know, the nurse, he can tell he’s sick. He says, “Yes, you are really sick, we’re taking you. It’s not up to you to choose, it’s hers.” No, you have to pay for that too. What’s the deal there?
It can be challenging to be confronted with these legal issues when you are busy caring for your friend or family member, although in many situations it is helpful to familiarize yourself with these kinds of arrangements and the options in advance.
There’s a caregiving group in [city in Saskatchewan]. I’ve gone to them for help. They had a good project on. It was 3 different nights. It was fun—it really was—and they even gave free food. Well, they just made you feel special. Like, the little teas and little dainties, they just make you feel special. The part I remember the most was about wills.
It’s hard to remember, but being a caregiver—and you mentioned that long-term disability thing—we’re going to talk about insurance. And one thing you have to do as a partner is you have to be their advocate and you can’t walk away from the insurance companies. Stand and—don’t stand and fight, that’s not what I’m trying to say—but stand and be strong with the insurance companies.
Sheni's negative experience with relatives resulted in a long and costly battle over issues of power of attorney. Sheni participated in this on-line project so that she could warn others about how important it is to have clear legal guidance when you are caring for someone else.
And so, she intentionally blocked contact, contacted the Public Guardian because she didn’t want me to control our family finances.
I want to tell my story and I’m trying to let go of the past. I wanted to sue those people so badly, and if you’ve got a lawyer in your family or something, do it because you’ll win. They like to settle. That’s another thing I found out when I was in the hospital as a professional. Hospitals don’t like being put in the paper. They will settle out of court, under the table. So don’t be scared.
Get disability life insurance when you’re young and healthy, because if you have an illness, it is difficult to get it. And also, it costs a lot of money to have a policy. Often, people take them out when their children are very young and it’s usually just a term kind of policy. But anything is better than nothing. When you’re done you’re schooling and you’re out in your workforce, make sure to look into this, even if there is a policy with your work plan, it’s good to get your own private policies because your work situation could change and you may not be under benefits anymore. You could give up your work because you’re starting a family and staying home with them. Your husband’s work situation could change. Get private policies on disability and life insurance. Protect yourself and your family when you’re healthy because it’s very, very costly and expensive down the road to get it when you’re diagnosed with a chronic illness. So that is something everyone should look into.
And also, your wills and your power of attorney, and your medical power of attorney—which I believe is called a healthcare directive—get those in place as well. We’re just working on that now. Have someone make decisions on—besides your spouse—on your illness, like your health. Also, have another person on it for your spouse. My spouse is the ill spouse, and I wouldn’t always trust his ability to make decisions about my health because of his cognitive impairment, and that’s why we put a second person on there. So, that is something that you should, people should consider, especially with an illness. Make sure there’s a second person on things. It’s not an easy thing to do, but they should have that in place as well. A healthcare directive is imperative with chronic illness, because you may not be able to make decisions at the time properly with emotional things in play. So, those are things that really should be taken care of early in life and kept up-to-date as well.
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.