Matsonia

Matsonia
Age at interview
59
Age at start of caregiving activities
47

Matsonia (59 years) is married and has one child from a previous marriage. She is the caregiver for her husband (76 years) who did not have children. She worked in hairstyling and as a manager of her husband’s yacht club, but retired 12 years ago. When Matsonia met her husband 12 years ago, he had already been diagnosed with Parkinson’s Disease. Her caregiving started with giving him his medication, and now she is providing 24/7 care. She just recently started receiving help with this. Her husband goes twice a week to a care centre and receives four hours of home care weekly.

Matsonia met her husband on a blind date 12 years ago. They went to a restaurant and she just noticed that there was something wrong with him, so after they spent a really nice time, she got the guts to ask him if he had Parkinson’s. Shortly after, she moved in with him, as she knew he was the one for her. After that first day she says that she never saw the illness again but only the husband she loves so much. Her husband now needs 24/7 care and cannot be left alone due to his developing dementia. She recently noticed how the caregiving activities have increased her stress and she is trying to deal with this.

In the beginning of their relationship she noticed that her partner was not medicating himself properly, and her caregiver’s role started with helping him with this. She tried to find ways to regulate, and not forget, his medication.

Through the years she has learned to find solutions to certain problems that you face as a caregiver.  For instance, she explains how the use of a pill timer with an alarm has changed her life; how she tries to detect bladder infections as early as possible by using detection strips, and how she has found solutions to the personal care issues for her husband, such as showering and diaper use.

Her husband has scheduled activities outside their home twice a week. This gives her just enough time to do all the necessary activities related to caregiving, but doesn’t leave any time for herself. The homecare staff change-over time makes it harder for her to make plans, as she often needs to stay around to give instructions to the carer. She appreciates the respite program for veterans that is designed to help the caregiver keep the care recipient at home longer.

Because of her husband’s state, she prefers to have friends over in the early afternoon so that they are able to see him at his best. She feels that not everybody understands her approach and that some people have felt unwelcome to stay longer. Matsonia feels that his friends and family resent her and think that she keeps her husband locked in the closet. Matsonia feels that they don’t bother getting to know her well.

Due to her husband’s behaviour, she went through a long and difficult eight-year journey before finding out that the medication he had been taking was causing hyper sexuality. She describes how this has had financial and relational consequences. His hypersexuality decreased immediately once he stopped taking these medications. Life is peaceful now and Matsonia is enjoying getting to know her real husband.

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In my trade, I have noticed women that would get Multiple Sclerosis and their husbands wouldn’t be able to handle that. They would start playing around on them and having affairs. And of course they’d feel horribly guilty. But you see, there’s been a change. And these marriage vows that we all take for better, for worse, through sickness and through health, but I think that people should really think twice when they make that oath, that promise to that person. You have to really think, “Am I going to love them and like them as much if they do get ill?” [My husband], he was sick to begin with so I fell in love with him the way he was. Chances are if he was well, I wouldn’t have been able to stand him; he would have been too much for me. So Parkinson’s had to slow him down a little so I could catch him. He’s a great man, what can I say? He’s just the best thing that ever happened to me. It’s a fair trade-off. He’s good for me. I’ve been good for him. I’ve, I don’t really see myself as the caregiver. I think he’s sort of my rescuer caregiver too.

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I guess that must have been maybe 4 years ago, and I was at the drugstore and I found a pill timer. It was a pill timer where you keep the pills in it and set the time up to 12 hours, I guess it is. And that was just a real feather in my cap because I could set it every 3 hours or 2½ hours and I could remember to give [my husband] his pills on time. So, this was making my life easier, because you can’t imagine how bad I would feel when he would bottom out… because he’s had Parkinson’s disease for 36 years, and so to give him his pills on time, every time, is really, really important, or he bottoms out; he can’t breathe, he can’t swallow properly.

What I do is I work with 5 timers now. So in the morning, when I wake up in the morning, I set all timers. I set it for 12 hours, 10 hours, 7½ hours, 5 hours and 2½ hours. And so, this way I stay on time every time. And it also makes a necklace; you can wear it around your neck. He goes to daycare at another facility as well. So I’m getting a break 3 times a week. And so I’m sending 2 of these pill timers with him in his bag because he can’t be trusted to take his pills properly because he drops them or he’ll just wind up taking them too soon because he doesn’t think. So, these 5 little pill timers are just wonderful, wonderful little things. In my life […] you wouldn’t think something small would make such a difference, but they make my life much, much easier to look after my husband with, and that’s what makes me happy.

The porta-potty beside his bed, what I do is I line that with a double garbage bag. I go to Save On Foods, and they’re small, size small kitchen bags. And the reason why I double line it with two bags is because sometimes one has a leak. And so, what I do is, in the morning, I put his—he wears women’s pull-ups, poise pull-ups—and I put the used one in the potty and that soaks up the urine. And then I use sani-wipes and I wipe over the potty really, really well for him. And then I’ve got the soiled diaper in there, and I just tie that just like you would in the morning for a baby—when you change the baby in the morning and you put the diaper in the garbage and that’s it. And then I put a new liner in and away we go.

The reason why I do it that way is because it makes my life easier. And it’s really important to use the Sani wipes so that you don’t get bladder infection. Bladder infection is very, very hard on my husband. It makes his dementia worse, and when his dementia gets worse, my life is hell for 2 weeks. You have no idea what I go through. So I just, I try to keep lots of fluids in him, and as far as his constipation problem, I have his psychiatric nurse to thank; she told me about the the recipe for fruit lax. […] The recipe is online by the BC Cancer Society, and it’s like a bag of figs, and a bag of prunes, and a bag of dried apricots, and a bag of raisins, and a great big bottle of prune juice. And you cook it up on the stove for an hour until you get it softened up, and then you put it in the food processer and that mushes it all up. And then I use these little Rubbermaid half cup serving containers, and it makes up maybe 12 of them. And I freeze them and I take them out one at a time. One will stay fresh up to 2 weeks, but of course [my husband] uses his up way before that, because he gets 2 big heaping tablespoons of fruit lax every morning.

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Yeah don’t be stubborn like I was; don’t turn down help. Never dismiss the idea that you’ll never get burned out, because it does happen. If you are a 24/7 caregiver and if you put into it as much as I do you will get burned out and you won’t know it. Don’t listen to your spouse if they’re refusing homecare; just do it. It really is nice, mind you, I don’t care for homecare that well because then it means I have to leave the house. And also with homecare, if they send you a different person every time, then you just can’t leave the home and leave a complete stranger in your home while you take off and go do shopping. You have to take this person through a half an hour to an hour orientation, telling them you know what he’s not supposed to be doing or what he’s supposed to be doing. Like, the rule in this house is he stays out of the cupboards, he stays out of the refrigerator, because he’s ripped doors off cupboards—things like that—and then it’s cost me $60 to get them repaired. He’s not allowed to go into the bathroom by himself because he’ll fall down, or get naughty. And so, […]it’s amazing when you’re dealing with a new person and you have to tell them what you know in a short period of time so that things don’t go awry while you’re gone. I mean it’s not any different than you leaving a child with a babysitter. You don’t leave your child with a complete stranger, do you? And you’re sure not going to let your child run amuck in your home either.

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Well, I met my husband 12 years ago. We went on a blind date. We had met on the internet and, at that time, I was living in [a city in BC]. He asked me out on a date, so I was going to go out for supper with him. He drove all the way to take me out, and he had never mentioned that he had Parkinson’s. He walked in my door with posies and he was going to give me a kiss, but I wouldn’t let him. I noticed there was something odd about him because his head was going like this. But I wasn’t afraid of him, and of course I knew a little bit of karate so I wasn’t too worried, and out we went.

We went for supper and I can remember sitting there dying to know what was wrong with him.  And when you’re small and your mother says, “Never ask somebody why they are missing that finger,” because it’s impolite… well, he was just such a nice person—I was having such a nice meal and he was such a nice person—I finally got up the guts to ask him, “Do you have Parkinson’s disease?” Why that ever came out of my mouth I’ll never know because I knew nothing about Parkinson’s. I guess it was just a lucky guess. Parkinson’s disease, 12 years ago to me, was just something that you heard that somebody had; like Alzheimer’s or whatever.

When I asked him if he had Parkinson’s he said, “Yes I do”. Well, I almost fell through the pavement. I thought, “Oh, now what do I?” because I know Parkinson’s is really bad.  So, I thought, “Now what do I do?”, and as we were walking across the parking lot to his car he says, “But don’t worry; it won’t kill me and you can’t catch it, and I’m going to live a long time, and I’ve had it since I’ve been 40.” And I knew then in my heart that he was the nicest person in the world that I would ever meet, and he was someone that I wanted to keep as a friend forever and ever. I knew then at that point.

Anyway he called me for three days, night and day, and he wanted me to come out and visit [a village in BC]. I thought, “Oh, all right,” so drove all the way out and I came up to this rustic log cabin and that’s where the magic started. I was visiting and he actually got quite ill, and so I stayed there and took care of him for a few days, still not knowing anything about Parkinson’s disease and what it does to you and no idea what I was getting into. Then, I got sick and he looked after me for a few days. Well to make a long story short, I just never went home, and after five months, we decided that I should give up my apartment in [a city in BC].

My cat and I officially moved in and I began my journey with Parkinson’s Disease […] It really didn’t dawn on me that I was going to be a caregiver at first, even though I did know that his condition was going to get worse. But after the first time he told me he had Parkinson’s in that parking lot, I’ve never seen Parkinson’s again; what I’ve seen was him, [my husband], not the disease. And to this day, I think that if he got well I probably wouldn’t like him as well. So, what I’m trying to say is I love him just the way he is, and some days I have to give myself a reality check because to me he’s not sick. To me, I see the person, not the disease.

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Incidentally, all three of those drugs, we’ve had a terrible experience with because it gave him hypersexuality. And that’s hard because it, it really hurt me, it hurt our relationship, it hurt our reputations, because with this hypersexuality that he had, it didn’t dawn on us that that’s what was going on until five years ago. So there was probably an eight year span of abuse because I didn’t realize Bromocriptine was making him do the things that he was doing and making him lie to me. And this was very, very damaging. And also, it cost us a lot of money. And it wasn’t until five years ago when we moved into our condo and so we were totally away from our jobs—and because we lived where we worked—and then it finally dawned on me. The doctor had switched him from Bromocriptine to I think it was Comtan or Mirapex—it was so long ago now I can’t remember which one it was next—because they said, “Well, Bromocriptine is a stone age drug now. So now we’re working with Comtan and Mirapex.” And so, actually I think he was even taking both of them. Well good grief, he just practically went off the Richter scale with hypersexuality then. But to me, I was relieved to know that it wasn’t him that was doing it—that these mind altering drugs make you do things. And so, all those hurt years from the past, I was finally able to forgive my husband, forgive myself, and I feel like quite a warrior because I didn’t desert him, that I did hang in there, and none of his behaviour problems were his fault. It wasn’t his fault; it was the drugs’ fault. And I live to tell about it, and I’m so glad we’re here today because I feel that I want the whole world to know how much we suffered, what we went through, because you don’t talk about sex. People just don’t do that. And so, I’m touching on the end, the topic of what these drugs can do to you sexually—and you don’t even know yourself when you’re taking these drugs unless somebody is living with you that knows you well.  And even when they know you well, they don’t realize it’s these drugs that are making you do awkward things. Or you know gambling...

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That’s the hard part—when you send someone, you’re trusting another person to look after your husband for you and you’re trusting them. And yet, I’m saying don’t trust them. Be on top of it. You have to know what’s going on.

The problem I was having with all the facilities [was] that they were not giving his pills on time right from the very first start in the morning. So, normally here at home, we start his meds at 7 o’clock in the morning unless we have an early appointment somewhere, then maybe I’ll start his pills at 6 or 6:30 in the morning and then every 2½ hours after that. When I do start his pills at 6 am in the morning, it really does make for a short day for him, because it means his pills run out sooner so he’s more apt to go to bed at 5 o’clock in the afternoon. It also means I need to serve him supper a lot earlier as well.

Anyway, when we’re at [a residential care facility], we sat down and talked about it and it finally dawned on me. They said, “Well the reason why we can’t give him his 7 am pills is because we’re doing our shift change. We’re doing our night nurse/day nurse shift change at 7 am so that’s why he’s not getting his pills until 7:30, 8-8:30 in the morning.” Well, by then, then he was due for his pills again at 9:30. So I got smart and I went to our other neurologist—we have one locally as well, because it’s too hard to go to [the university hospital] every time there’s a problem. So we also have a neurologist here and we just love him and he rewrote the prescription for me to say that he’s supposed to get his pills at 6 in the morning. So this way, the night nurse has to give him his pills at 6 am. She’s got nothing else going on. She’s not doing her shift change, so she can’t get out of it. So this has worked like lucky charms. Even though I give him his pills at 7, but when he goes to these facilities, they start his pills at 6. That’s helped.

Trial and error; you just have to get creative and foxy sometimes.

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It’s the greatest gift you can give to another human being. To give yourself, to give your life for another person. Like I said, there are some people who are so selfish or they are so needy themselves they could never carry out this task. Caregivers are tough, and you better believe it. We’re very tough people, we’re fierce, we’re warriors. We fight just as hard as the victim does, if not harder. The tougher it gets for us, it just makes us all the more tougher. I’m determined. It’s not going to break me. I’m not going to let it take me down. It’s an honour, an honour to look after [my husband].

It’s just really a fulfilling and happy, to know that I’m a success. I’m not a failure; I’m a success. I can do it and I’m doing a good job. I know it. I know I’m good. Even though I’m powerless, I still feel I’m in power, and I’m just bound and determined; I’m going to keep my man at home with me as long as I can until I have to come to the mature decision to change our lives once again. But for now, we have our happy home and [my husband], he loves my cooking, and we’ve got the cats and us, and we just live out every day and try to be happy somehow.

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The part that’s imperfect is actually the bathroom. I realize that as [my husband] progresses I’m going to need a drive-in shower for him. I’m just not going to be able to wheel the chair, wheelchair up to the shower like I do now, and he’s able to step in and sit on the stool. It’ll be a little more—I’m actually hoping that we’re going to be moving in about 2 years. I understand that the, there might be a condo that’s going to be built that…they are going to have the handicapped in mind. So, late 2013 I would be hoping to be lucky enough to get into this facility because when [my husband] does have to go into residential care, he can still come home every day and I can shower him and keep him clean, and I can get him around the house quite freely. They’re also allowed to, once you stay in a residential care facility, you’re allowed to sleep somewhere else 45 nights a year. So of course, yeah, I’m going to have him home with me. And they tell me that, when he does stay in full-time residential care, we’ll actually have more fun because I’ve never been a wife to him. I’ve always been a caregiver. And it’s funny when people ask me who I am, and I look at them and I say “Well you know, I’m his 24/7 caregiver, I’m his wife, and I’m also his favourite antagonist.”

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Another reason, another too, I remember when we were still working back at [a harbour in BC] hen he was on Domperidone and Comtan and Mirapex he didn’t get good sleeps either. He would dream in Technicolor. His arms would be flailing all over. I would end up getting socked across the jaw and all kinds of crazy things. He’d be bailing out of bed even more, so I remain to say again, it’s just nice to have him on Sinemet.


The unfortunate thing now is, and I’ve seen it coming on for probably six years, a form of dementia. And I was watching it. I noticed about six years ago he couldn’t be responsible for keys and putting things away. Just he would lose stuff. It’s really been quite, quite obvious to me the past 3 years that he just wasn’t thinking when he’d do things. And so, what we did was I had to go through the channels, and it’s very hard to find a geriatric psychiatrist that would diagnose this problem. So eventually, our GP here in [a city in BC] had found [my husband] a geriatric psychiatrist, and of course this doctor had verified it was actually what I thought [my husband] had, and that was a form of dementia.


Now a lot of people think dementia and Alzheimer’s disease are the same thing, and they’re not. I had to find out the difference, and so I was told that Alzheimer’s is when you’re truly losing your memory; whereas when you have dementia, you’re losing your reasoning, your sense of intelligence. Now, I was also told that 50% of Parkinson’s sufferers do get Parkinson’s dementia eventually. Now, Parkinson’s dementia, the damage is all in the frontal region, regions because this is where your brain cells are that affect your judgement, your sense of reason, your intelligence. And so, because his brain cells are dying every day, every week, every month, it’s now affected that part.


Parkinson’s dementia is something I was never prepared for. When I met [my husband] I was prepared for Parkinson’s disease for the rest of my life and I was bound and determined I was going to stay with him right until the end. But this Parkinson’s dementia really floored me because that is hard on me as a caregiver. If it was just Parkinson’s disease, to me it would be a breeze. The dementia, it’s hard. I wound up getting burned out and thank goodness for the Parkinson’s and Epilepsy Society.

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Another drug he took for a few years was called Domperidone, and the reason why our neurologist in [a university hospital] put him on Domperidone was, he said, it would help constipation. Well it never really worked. I didn’t realize, I wasn’t told at the time that it’s supposed to help nausea. I didn’t learn that until I started networking more. And then finding out it’s supposed to help nausea. And I said, “Oh, I just thought it was supposed to help the constipation thing,” and I really didn’t think it worked for either.

But the other thing was, now my husband is 76 years old, and he was up several times a night peeing, and of course he’s quite disoriented and I found in the past three years, I’ve had to put a potty chair right beside our bed with a ceiling pole. And I even bought a Murphy bed for me to sleep on because I just wasn’t getting any sleep because he was up and down, up and down all night. And also prone to bladder infection, it would even be worse. And so, […] my poor husband, he’d just be so pooped out not getting any sleep.

Anyway, I thought about things and I thought about things, and I made an appointment with our pharmacist because you can do that.  And I asked her to research Domperidone. Now, the way it was explained to me was Domperidone is supposed to spas your bowel. So, it spases your bowel and moves things along, so that’s why it’s supposed to help constipation. So I thought, “If it spases the bowel, then it must spas the bladder, and maybe that’s why he’s peeing so much.” So sure enough, our pharmacist she says, “Matsonia your hunch was right; it was spasing his bladder.” So, we’ve been getting some really good sleeps not being on Domperidone, and I just think it was just a total waste of money.