Sheni

Sheni
Age at interview
56
Age at start of caregiving activities
47

Sheni is 56 years old and lives with her husband and two of her three grown children. Sheni’s husband has acquired brain injury (ABI) as the result of complications from a health condition and he suffers from serious short-term memory impairment. Sheni’s youngest son was diagnosed with a brain tumour 12 years ago when he was only 10. He has had several periods of treatment and had brain surgery at age 17. Sheni recently lost her job, so is a full-time caregiver. Her husband requires a well-organized care program, even though he was able to remain home alone for the past few years when Sheni was at work. Her other children help care for their father. Sheni also monitors her son’s health closely and reminds him to take his medication to prevent serious seizures – she worries about him forgetting. Sheni also worries about the family’s financial situation.

Twenty-two years ago, three years after Sheni’s marriage, her husband was diagnosed with hydrocephalus (a build-up of fluid inside the skull that leads to brain swelling). A cerebral shunt was inserted to drain excessive fluids from his brain. After ten years without complications, her husband then started to develop problems sleeping. There was an attempt to resolve these symptoms by modifying the shunt and changing the drainage into his abdominal cavity instead of his spine. Sheni and her husband were not informed that this could lead to more complications.

More than two years later, Sheni woke up one day and found her husband totally disoriented on the floor. The shunt was no longer functioning, and he was suffering from the increased fluids and resultant pressure in his brain. The shunt was replaced in hospital and her husband returned home. However, he had another episode within one month, and he had been diagnosed with bacterial meningitis. A hospital resident suggested removing the shunt to increase his chances of recovery when he was on strong antibiotics. Although Sheni’s family felt that removing the shunt was a bad idea, they agreed under the condition that the resident monitor him closely. Two days after the shunt was removed, Sheni was called early in the morning because her husband had slipped into a severe coma. Even though her husband has since recovered from the coma, his health has significantly and persistently deteriorated.

To save Sheni’s husband’s life, a new emergency shunt was placed outside of his body. After four months of neurological intensive care, Sheni’s family then had a particularly difficult year, characterized by hospitalizations due to shunt complications, as well as rehabilitation sessions in a specialized centre. Finally, in a risky intervention, a shunt-free drainage system was inserted. All of these stressful events had an impact on other areas of Sheni’s family life. Sheni lost her job, and since her formerly self-employed husband no longer had an income, she needed to re-train and search for a new job while caring for her husband and three teenage children.

Sheni did find a new job only 19 months later and secured some support from the Community Care Access Programme (CCAC), but the 14 hours they offered were not enough. Sheni found herself in a desperate situation, where she had limited if not impossible options: leave her husband alone while she worked, pay prohibitive fees for professional care, and/or find help from relative or friends.

Sheni’s retired sister-in-law offered to take care of her brother at her home, which Sheni agreed was the best option at that time. Unfortunately, this decision led to devastating financial and emotional problems for Sheni and her family. These have yet to be fully resolved. Once her husband moved, her sister-in-law disagreed with Sheni’s approach to his care and with how her brother’s savings were being used to provide for family needs such as their son’s medication and the children’s education. Her sister-in-law said harmful things about Sheni to organisations such as the CCAC and the Public Guardian, and moved with her brother more than an hour away from the family home, blocking contact with Sheni and the children. Sheni was then out of contact with her husband.

Her son’s brain tumour continued to grow, and when he reached 17, an urgent operation was required. Sheni was able to re-establish contact with her husband about their son’s brain surgery through her lawyer, who had to work through the Public Guardian to inform her sister-in-law and her husband. But the pain and harm caused to the family by the inability to speak with her children’s father and husband was too much for Sheni. She decided to pay for a live-in caregiver and make arrangements for the return of her husband. Her sister-in-law did not fight this decision. The family was reunited again.

Sheni then had to deal with the damage caused by her sister-in-law’s legal accusations. The Public Guardian had revoked Sheni’s power of attorney, and her husband’s assets had been removed from her and her children. In an attempt to clear her name Sheni hired a lawyer, and a costly six-year battle ensued. In fact, the Public Guardian used a significant amount of her husband’s money to fight her in court. Sheni was eventually able to prove that her sister-in-law had provided false information. However, due to her financial situation, she had to abandon the battle for power of attorney and accept an arrangement with the Public Guardian.

Sheni’s financial future has changed drastically since her husband got sick. She recently lost her job again and worries about whether she will be able to find another one now that her own health has deteriorated. Their assets are rapidly declining, as the Public Guardian charges for everything, and Sheni feels that the Public Guardian did not establish the right balance between benefits to her family versus benefits to her husband. She feels that the financial and emotional damage caused by this whole process amounts to financial child abuse (by the Public Guardian), as it has significantly reduced the means that are available to her children.

 As a result of living with constant fear and worry, Sheni has now been diagnosed with post-traumatic- stress disorder (PTSD). Her concentration and memory have notably reduced. She feels less tolerant of the ordinary problems that others are able to deal with, which affects her relationships. She believes that her capacity to cope is insufficient for the problems that she is facing. Sheni is coping with all this by expressing her anger and talking more about her situation. She also does extreme exercises, such as biking a distance of 100 km.

Sheni deeply appreciates it when others can sympathize with her situation, understand and validate what she is going through, and listen carefully even when she needs to vent more than once. She now has some friends she can call at any time and with whom she shares pleasant activities, such as going out for dinner. Sheni has become a resilient caregiver – one that may occasionally need to compromise, but one that never gives up.

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The support that I find is the most helpful is when friends actually get it and they say things like “I don’t know how you do it,” or “It must be really hard. You deserve a medal.” Like, just stuff like that. Or when they do something really nice for me, like if they take me out for dinner or something like that. That’s always nice. Or if they basically— I think that the most important thing is for people to really understand what you’re going through and validate what you’re going through, and listen to you when you’re bitching and you’re really having a hard time. That’s the kind of support that I find the most helpful. And also, another thing that I find really helpful is having friends who don’t mind you calling at almost any time. Like, most people, you can’t call them pretty much between 11 and 8 in the morning.

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You can’t live on… you can’t raise a family on Canada Pension benefits that were something like $800 or $900 a month—whole family, okay? To live in a house, even if we lived in an apartment, you can’t live on that little money. So, I obviously, I had to work and I said, “Well, okay. So, you want… you’re suggesting that he lives here. How am I going to have him looked after while I’m gone for work?” Well, it turns out that they could provide 14 hours of care a week on different days. I’m like, “Well, I need 12 hours at least on like 5 days.” “Oh well,” like they just didn’t have an answer for me. They had no answer for me. They basically insinuated that I should be the one to come up with a solution. They did not help me at all, and I’m really miffed about that because they should understand. I don’t understand how they can’t understand this. Like, was I supposed to just not work and use the 14 hours a week a couple hours a day each day and then just look after him myself and not work? I mean, that’s not sustainable. It’s not realistic. So, what I found with the so-called healthcare profession was that they had no answers; they had no answers at all for the financial aspect, which is a big aspect. Because if you have your financial base covered, your life is not nearly as stressful as if you don’t. So, if a person that has an acquired—that becomes disabled—worked for a company as a full-time employee and has long-term disability, then it’s not an issue. They can… at least they have a decent income coming in. So, you can manage on… if your income’s a bit lower than it was when you were working, well that’s not too bad. But when you have no income, you just cannot look after a person in that situation; you can’t. So, I found that they tried to make me think that it was possible, but didn’t offer me any ways of making it possible. There was no financial help, there was no help from—there wasn’t enough help from these agencies to enable somebody to work full-time and look after a person in that condition.

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Yeah, the live-in caregiver was really good having him around because he hung out with my husband and they kind of… it was entertainment and plus it was helpful because he would make meals and he would do some laundry… and […] if I was at work and I needed to know what was going on, then I could phone him because if I phone—like, first of all, my husband can’t, like he loses things left right and centre, so you can’t give him a cell phone. He had an I-touch, and he was had a few of those, and they keep getting lost, they keep getting broken so I mean we basically gave up on that. So, if I want to know what’s going on, if I wanted to know what’s going on, I could just phone the house and talk to the caregiver and get an accurate answer. Because if I talked to my husband, he wouldn’t always give me the correct information. It was just you could not rely on stuff that he said. So, having the caregiver was really, really helpful. But you know what? They don’t work 24/7.

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So I don’t know, it was just, it was a problem in a lot of ways. Like, I just found it really difficult to manage all this stuff. I had so many times where people would call me. One time—my husband takes the mobility bus to go to his day program and they can’t seem… well, I had to sign a waiver saying that it would… like, he doesn’t have to do the hand-to-hand transfer, that he’s quite fine being dropped off at the house and nobody has to be here when he gets here. Well one day, they phoned me at work; nobody was home, the door was locked, and he had forgotten his key, so they phoned me at work. I’m downtown; they’re way out […] in the suburbs, and they’re like, “Well, there’s nobody here and he can’t get in.” I’m like, “Okay. Well, I’m at work. Even if I leave now it’s going to take me like an hour and a half to get home. What do you want me to do?” Like, you find yourselves in these impossible situations and these people are… they wanted me to waive my magic wand and solve the problem, and I really don’t know what to do. What do you suggest? “Well, we can keep him on the bus for a while.” Like, “Okay. Well then keep him on the bus,” or […] he just hangs out at the front of the house for a while, or he can take a walk to Loblaws—he does that all the time. Well, they wouldn’t have that; they wouldn’t hear of that, right. Eventually he ended up coming in through a window. But these are… you run into all kinds of really, like, situations that are really difficult that most people just never—people that aren’t in this situation dealing with these kinds of problems they, they never have to deal with these situations, and they can’t imagine how difficult it is.

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He ended up going for 6 weeks of radiation treatments—every day we went down. I had to take time off work because I basically had a breakdown and I just—I couldn’t function anymore. And I had to… I just, I took this time off and I drove him down every day and he went for the radiation treatments. And we dealt with all that. And the poor guy, he was like so tired, lost half of his hair, and it was just, it was just really, really difficult. But anyway, after that the tumour shrunk a little bit and the last MRI that he had they said that the tumour was… well, they said “stable”. So that was back in December. And after, because he had gone for the radiation and the tumour shrunk a bit, and because he’s taking the drugs on a regular basis—like, not missing any, and they increased the amount of drugs that he’s taking and the combination of drugs—he’s actually, he was seizure-free for more than a year. And so he got his licence back. And so now, he’s able to drive again, which is a huge benefit to him and me because, when he wasn’t driving for over a year, I mean, I was the taxi. I was driving him all over the place and I felt—I mean, I had to do it. It’s my son; I had to do it and I wanted to do it.

But you know what? It’s so difficult to play taxi all the time, especially when you need to get up for work early in the morning and kids like to stay out late—they like to stay out late—and so, I would often have to say, “Well yeah, I can pick you up, but what it can’t… it’s not going be 12 midnight. It’s going to have to be 11, I’m sorry.” And so, I would feel bad cutting back on his social time, but there’s a limit to what you can do as a caregiver. Like, you’re not, you’re not superwoman, you’re not superman and you’re not a magician. And it’s so hard because you get so, so tired; physically tired, emotionally tired, drained. It’s just, it’s brutal.

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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. Maybe he doesn’t need it anymore, and this might hasten the recovery from the meningitis.” So, we reluctantly said “Okay. Well, as long as you’re going to watch him really carefully then okay, fine. But if he starts looking like he needs the shunt put back in, you need to promise us that you’re going to act quickly on that.” So he assured us that he would, and that was on, I believe it was on a Friday, and by that weekend he, my husband, was acting fine when we visited him at the hospital. And then, I went home Sunday night thinking that everything was okay. But then, I got a call at around 7:30 in the morning from [his neurosurgeon] saying that he was #4 on the coma scale; he had gone into a coma and they needed to insert a temporary shunt immediately at his bedside in order to save his life.

In fall of 2000… or sorry the spring of 2010, not long after he finished chemo, he started having lot of weird things started happening. He started having problems with his—the tumour is on the right-hand side of his brain—had a lot of problems with his left hand and arm and his face; they would start going numb on him. And we had a number of situations where we had to take him to the hospital, and because of this, knowing that the tumour is on the right side and this was happening on the left side, it’s never happened before, I started thinking the tumour has grown. So, I start mentioning this to different doctors and they are like “No, no, no. You’re over-reacting,” right.

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And so, she intentionally blocked contact, contacted the Public Guardian because she didn’t want me to control our family finances. And so, she wanted the Public Guardian to step in and so she slandered me and she made up all these lies, and told them all kinds of stories about me that were all unsubstantiated, that later on in court—when I ended up in court, and under cross-examination—they found out about a number of lies that she had told. She was basically interfering with my ability to manage the finances. Like, she did things like sell a piece of land that that he owned, and she didn’t tell me about it. She opened a bank account for him in his name and put the money in it, but then she took money out of the bank account—his bank account, that I was supposed to be managing. And I don’t know what happened to that money, but of course, she… Well, she didn’t really tell the Public Guardian about that. Anyways to make a long story short, the Public Guardian revoked my Power of Attorney and my sister-in-law took him to a lawyer, told him that we were divorced—which we weren’t—and she told—we were living separately because of logistics basically—and she didn’t bother to say anything in my favour. She just wanted to make sure that the Power of Attorney was revoked, and she ended up… the Power of Attorney ended up being turned over to the Public Guardian. So they basically seized all of his assets and made my life, and my kids life, and his life a living hell. And it’s been a living hell ever since.

Now, I tried to regain Power of Attorney. I had to hire a lawyer to defend myself against their specious and false accusations, and this battle went on from 2006 until last summer, 2011. And I had to make a number of concessions with the Public Guardian. They are still managing his affairs and they’ve made my life a living hell because they can’t manage affairs properly. They charge extraordinary fees to manage people’s money, and of course they don’t tell people—like, they didn’t tell my sister-in-law that they would charge these fees. So, most of my husband’s CPP benefits, disability benefits, that he gets from Canada Pension are eaten up by Public Guardian fees. So this is something that the Public Guardian does not advertise. So one thing that I think people need to watch out for if they’re ever in a situation where they are a Power of Attorney is that they need to actually read up on what the so-called rules of being a Power of Attorney are, so that they can avoid any potential conflicts with the Public Guardian, because once you get involved with the Public Guardian, you will suffer enormous financial losses, and psychologically you will be devastated. They just make your life so difficult that it’s just… it’s indescribable how much harm they cause.

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I have no… tolerance, I guess you would say, for people who have minor problems and whine about them. And that affects my relationships with a lot of people, because they’ll be whining about something that’s like really, really minor. And yes, it’s a problem for them and I understand that, but if I only had those problems I would be jumping for joy. If my kid flunked a course and had to take it—oh, actually my son has, because when he was on chemo he flunked a lot of courses because he was too sick to go, and you don’t get a tuition rebate when it’s half way through the term. So I have accepted the fact that—I don’t care—I’ll gladly pay for more courses. You just take them again. It’s not a problem.

Other people whose kids flunk courses, they’re complaining and whining, “Oh, they flunked a course. They’re never going to be a success in life.” I’m like, “Give it up man. Be thankful your kid’s healthy!” So that has tainted my relationships with a lot of people because of the anger and the fact that I’m constantly reliving a lot of the crap that I’ve been through and people don’t want to hear about it anymore; that’s affected my relationships with people. So from a psychological perspective, it’s had a really negative impact on me.

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Do I just not find a job and go through the assets or do I find a job and leave him at home by himself, or do I find somebody to help me? There was no help available. So, in order for me to get somebody to help, it would have to be a relative who was willing to do it for essentially nothing, or for a very low fee…or you just take a chance and leave them at home. You just don’t know what to do because your options are extremely limited. So, not only was there an emotional impact to this whole scenario, but there was also a huge, huge financial impact as well, and a lot of stress in every way, shape, and form. Like psychological stress, financial stress, it was just stress city, totally. I’d been totally stressed out for all these years. It’s just been ridiculous.

Anyway, one of the things that I ended up allowing to happen, because I was in a very desperate situation, was I allowed my husband’s sister to look after him when he got out of the rehab centre. Now, that was not something that I would suggest anybody do, although I felt it was my only option at the time. It ended up being very problematic because she was really making my life difficult and interfering. I was his power of attorney and she was interfering with everything I did and she was questioning everything I did. She didn’t think that any of his money should be used to support his kids or to pay for his things, to support his assets, for example to pay any of the taxes on the home that we own or the property that we own. Stuff like that.

So, there was a lot of interference from these, from his side of the family. And yet, they did not, in really any way shape or form, offer to help at all. So, I was having to deal not only with the situation with him, but it was compounded by the fact that they just basically stepped in, made my life extremely difficult. So, that was a really hard thing to manage and they even took it a step further and started complaining to the Public Guardian that I was—well they made up a lot of stories that weren’t true. They lied about a number of things. And they said things like I had property up for sale that we co-owned, and that wasn’t true. But they told the Public Guardian that, and then my sister-in-law decided to block contact when my husband was living with her.

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Dealing with a situation like this—the whole hospital scenario, the whole medical issues, the seeing their father in a coma, dealing with the fact that I was stressed out because of it. I was running back and forth to the hospital daily and including when SARS was on. When SARS was a problem in 2003, they had restrictions on who could visit, and only one person could go down and visit at a time. 

So I would go down there; I was running back and forth, back and forth. And these poor kids—I could have really used some help, to have somebody here to help out with them, driving them to soccer, driving them to their extra-curricular activities, even if somebody would have come home and gone and done some grocery shopping for me. That kind of thing would have been really helpful because […] I’m sure [my children’s’] heads were spinning. They didn’t know what the hell was going on and I’m sure it was really traumatic for them.

My oldest daughter, she was just starting university in September shortly after this happened. She had to work full-time. So, I’d have to drive her to work every day and back. She was working at a golf course, putting in long hours, coming back with headaches every day from dehydration because it was so hot. […] It was really difficult for them. They were trying to live their lives, and [...] I was trying to minimize and mitigate the psychological damage to them caused by this traumatic situation in our family.

And I did a good job; I know I did a good job because my kids have all turned out really well. I think a lot of kids in situations like this end up with so many psychological problems that they end up turning to drugs, alcohol and God knows what, end up with severe behavioural problems, which to me is something that would be no surprise at all in a situation like this. I know that […] I tried to keep their lives as normal as possible, and I drove them to their activities. If there was something that they needed to keep their minds occupied or to enhance their psychological well-being, I would do it. Every birthday, I would give them birthday parties and I just tried to make their lives as happy and normal as possible.

It’s been hard for them, especially when there was a lot of contact blocking. My oldest daughter was away at university, so it didn’t have as much of an impact on her, but the younger two were living at home—and my son, he has a brain tumour—and they couldn’t understand why people were trying to prevent them from talking to their father.

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He was at the rehab centre for close to a year, and by the time he was ready to get out I, well actually let me just step back a bit. He had been unemployed. We were both self-employed and so we didn’t have any kind of benefits to fall back on. So when this happened to him, he went from having income to having—like a fairly decent income—to having no income at all. And then 2 weeks before the second incident, I lost my contract job. So, we went from having a really high family income to having zero income and zero benefits. No long, no long-term disability benefits, no unemployment, nothing to fall back on, and so that was a really, really—another stressor that was added onto all of this.