Shayna

audio only
Age at interview
66
Age at start of caregiving activities
30

Shayna (66 years old) lives in an apartment close to her daughter and grandchildren. Shayna’s husband was diagnosed with multiple sclerosis (MS) when her two children were three and six years old. She cared for him for 25 years until he passed away seven years ago, just after the couple was in the process of moving closer to their children. Shayna worked as a teacher in specialized education. She is now retired and writes newspaper articles about caregiving.

Shayna was 30 years old when her husband was diagnosed with MS. Her husband received the diagnosis by phone, and she still remembers how badly this affected him mentally. After another negative encounter with a second physician, they received excellent care from a third specialist who, wisely, asked them to remain in his office and discuss things with him until they felt they had a handle on the disease.

Despite his illness, Shayna’s husband continued working as a professor, rabbi and community organizer – made possible by the support he received from his medical professionals, employer and his family. During the last three years of his illness he had to remain in the hospital most of the time. Not only was his family affected by the caregiving aspects of the illness, but others in their social network were as well, as an enormous ripple-effect of the disease. Shayna describes, for example, how stressful situations at home led to difficult situations at her work.

Shayna became a caregiver at a young age and with growing children. She had few friends and no other family members around, as they had just moved to another province for her husband’s work. Her long-term role as a caregiver has affected her in many ways. For instance, Shayna explains that caregiving has made her and her children become stronger and better people; however, she would erase this experience in a second if she had the choice. After seven years of post-caregiving life, Shayna can still feel in her body the stress that built-up during those 30 years of providing care. Caregiving also affected her career. For example, Shayna repeatedly had to refuse offers to advance in her profession, even if she would have loved to do so. Shayna knew well that she would not be able to cope with further work responsibilities, because of her family and caregiving situation.

The long time-span of Shayna’s caregiving led to family situations where they had to make decisions that were often [or sometimes] not understood by outsiders. Besides having to deal with difficult decisions and the consequences of her situation, Shayna was also confronted with painful judgemental reactions from others. She wished that those people could have been more open minded and ready to offer a helping hand to her family instead of telling her how to do things differently. Shayna was once confronted by friend who was very angry with her because Shayna was watching her husband struggle to go down the stairs. Even though Shayna would have loved to help him, she knew how important it was for him to keep this independence.

Shayna’s husband passed away in a nursing home in their new location while Shayna and her husband were moving to another province to be closer to their children. She had to rebuild her life in a new city and she realized then that she could not just pick up the pieces and take off where she used to be 25 years ago. With an everlasting positive attitude and determination, she now writes about caregiving in a newspaper to advocate for caregivers and raise awareness about their challenges.

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So again, we did the best we could. Would I have done it differently in retrospect? I probably would have been more my own advocate as well, which I didn’t know how to be. Which is why what I do, now that I’m a widow, I try to make people aware. There’s a whole issue I think that people are afraid to talk about when it’s a female who’s the caregiver: the loss of feminism. You are pushing that wheelchair, often through the snow if you live where we live. I remember once we were invited to a party and all the wives were dropped off as I dropped off my husband and went to park the car with all the men, and then came back and again the invisibility and everybody chatting how wonderful it was to see him. And then all the husbands and I went to get the cars and shovelling off the snow and warming up the car. And then, as these women are waiting for their husbands to drive up and go into the warm car, I drove up frozen to get my husband in the car and it just hit me. There’s a whole piece of feminism—and that is a very integral part of being a woman and in a marriage—that is gone. It’s really gone, and that’s another loss that you mourn.

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Yes. What is helpful is specifics. Don’t say, “If you need me, call me,” because the caregiver probably will not call unless they’re older, and it’s not taken as a sincere invitation. It just isn’t. Calling up and saying, “I’m bringing dinner at 7 o’clock, let me know if it’s inconvenient?” Or before, as I said, my son… my husband was in the hospital in intensive care before my son’s wedding, and a friend came over—and I’ll never forget this—and said, “I’m not leaving until you give me a list of things to do. I know you must be going crazy for the wedding. You give me a list, and I will just take care of it.”

You need to be specific. Take the children out. We were a religious family, so we sit separate in synagogue. If my husband couldn’t go to synagogue, my son was alone. So unless somebody is there to be a pseudo parent, it’s horrendous, it’s horrendous for the child. If somebody isn’t willing to be a big brother, or “come with my family,” or whatever in terms of worship, in terms of the holidays. Be specific. Think of what’s not happening and offer that. You’re going grocery shopping; call up, “I’m at the store. What can I pick up for you?” “Can I do your car pool?” Or get together with a group if there are young children. That would have meant the world to me—that car pool on top of delivering my husband to work and getting myself to work. It doesn’t even have to be all the time, just once in a while. I remember once, I had gotten my husband in the car and I was struggling to get the wheelchair in the trunk before we had the accessible van, and a stranger came by and said, “Please let me do that for you.” No one had ever done that for me. I just stood there. The feeling, the euphoria I got because someone picked up this wheelchair. Just look and see what’s going on. Carry groceries into the house. There’s so many little ways you can help a family in this situation. You just have to look and think, “What would I do in this situation? What would I need in this situation?” But be specific and don’t give the onus to the caregiver. “Call me if you need something.” That’s horrendous.

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My husband started to have difficulty dragging a foot. He started to show symptoms in terms of writing; did not know what it was. So we went the path of going to the doctor, who sent us for further tests; sent us to a neurologist. 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—and [the neurologist] said, “Well, you come in and we’ll talk about it.” But, in the end, he did tell him the diagnosis of MS over the phone. And because his personality was suggestive, I saw the deterioration within 5 minutes. He had been on the phone, he had walked and all of a sudden, he couldn’t master things that he had done just a few minutes ago. So obviously it’s a pet peeve of mine that that should never be done to anybody.

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Well first to the ill person, okay, I believe in giving if they can. I’m not talking about dementia, but if the person is cognitively okay, realize what’s going on around you. Realize that there’s a need there as well. I remember I once had the flu and my husband said—and we had a good relationship—and he said “Don’t worry, I’ll manage dinner on my own.” And I wanted to say “Thanks. I’d like a little soup.” Some “I’m here! Hello!” But that’s what happens. So first and foremost, the spouse needs to take responsibility for the caregiver. It could be as simple as making sure there are flowers delivered once in a while if you’re able to make a phone call. That would make a tremendous difference. Saying “thank you”, saying “I’m sorry”, not even for things. […] You don’t have to be sorry for the illness but you could be sorry for what your spouse is going through. Just, there’s so many things that a well spouse goes through that a spouse can just appreciate, to recognize and just appreciate.

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As my husband deteriorated, we had had our first—his first car was a Grand Caravan and it was accessible but he drove; he could transfer. As he could no longer transfer, the car became obsolete. We couldn’t afford—these are very expensive vehicles—we couldn’t afford to get another one and nobody could figure out how to do it. [The engineering company], in the end, cut his wheelchair in half with 40 ball bearings, put ball bearings on the driver’s seat, it was just the base, so that he could pull up next to it and just move over and drive from it. It made such a difference in our life that he could still drive and I didn’t have to do all the driving. It made such a difference to him, and it made such a difference to the government in that he was employed.

What would we have done gone on disability? It is so short-sighted not to have these programs. You wind up needing mental health professionals, needing or going on disability or welfare. There is no reason if the only problem is getting where you’re going in order to work on time. So, all these things are my pet peeves. All the things that I’m mentioning. It’s so important to see the bigger picture, the ripples. Again illness doesn’t just affect the person, it doesn’t just affect the family; it affects everybody.

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One of the, one of the incidents that happened that made me really realize how much energy is lost and how you need those supports was I had a very important placement conference for a special needs child, and I took a lot of care in what I was going to say, how I was going to present, how I looked because I knew how I presented this case would have a tremendous effect on this child that I was working with and his placement. As luck would have it, the adaptable transit, came to pick up my husband for work. And the guys were always very nice and what happened that day I’m not sure, but as they picked him up on the lift, a fuse blew in the wheelchair, and the driver knocked on the door and told me he was not allowed to deal with it and I had to come out and change the fuse on the wheelchair, which I did and I became full of grease and dirt, had to change, became late to this very important professional interview. I lost my case for this kid and I felt terrible about it. And it just really reminded me how the systems impact on each other. I don’t know what would have happened if the incident with the wheelchair hadn’t happened, or if the driver had dealt with it himself as they always had in the past, and I had showed up on time and been in a different mental state and so on. I often think about it when I think about how an illness is not just for your little house, how it affects others. If you have a job, if you work, it affects—the ripples of it are tremendous.

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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 for it—and he said, “Well, you come in and we’ll talk about it.” But in the end, he did tell him the diagnosis of MS over the phone. And because his personality was suggestive, I saw the deterioration within 5 minutes. He had been on the phone, he had walked, and all of a sudden he couldn’t master things that he had done just a few minutes ago. So obviously, it’s a pet peeve of mine that that should never be done to anybody. We had a wonderful family doctor who talked him through, kept him upbeat, and he actually drove to the appointment with the neurologist. We went into his office, the neurologist sat us down and said, “I concur that you have MS.” And I said, “We’re really very frightened. Could you spend some time explaining it?” And he said, “No. Get a second opinion if you want more information.” This was a top neurologist, and the awful part of that to me was my husband, who had driven down could barely make it back to the car; there was no way. I had to help him into the car, and it just showed me how, yes, you may have a disease, but your mind is still in control for positively or negatively. And it was downhill from there. And I think if it had been handled differently, the results would have been different. We saw a neurologist there who concurred with the diagnosis. But the difference was—I still remember this—he sat us down and he said, “You have waited for your turn, you will not leave this office until you have a handle on your disease. You will have my phone number; if you have any questions call.” And I think, the way my husband was handled by that neurologist enabled him to continue working and made such a difference, and it always left a huge impression with me on how a doctor handles the diagnosis has a tremendous, tremendous effect on how the person copes with what they’re coping with.

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Again, we were very fortunate. Where we lived had a phenomenal government program, called [an engineering company], where if you could not buy a support, and if they agreed, they would invent it for you. So one of the things that they invented—there was a woman there [and] we took advantage of it as grandparents—but one of the things they did is they made handicap accessible cribs and strollers. You cannot buy that.

So, we asked them to build us one because my daughter and her oldest son came to live with us for a while, and I didn’t want to have to get a babysitter if I was going out with my daughter if I didn’t have to. […] I mean to get a babysitter when there’s an adult in the house has its effect on everybody. So they created this crib for us. We bought the crib, they put it on stilts, the wheelchair went underneath and it opened with Plexiglas sideways. So, from the wheelchair you could pick up the baby, and there was no reason that my husband couldn’t care for this baby once he got him out of the crib. So that was one of the phenomenal things, the phenomenal experiences. I wish every province and every state had a government organization that did this.

As my husband deteriorated, we had had our first—his first car was a Grand Caravan and it was accessible but he drove; he could transfer. As he could no longer transfer, the car became obsolete. We couldn’t afford—these are very expensive vehicles—we couldn’t afford to get another one and nobody could figure out how to do it. [The engineering company] in the end cut his wheelchair in half with 40 ball bearings. Put ball bearings on the drivers seat, it was just the base, so that he could pull up next to it and just move over and drive from it. It made such a difference in our life that he could still drive and I didn’t have to do all the driving. It made such a difference to him, and it made such a difference to the government in that he was employed.

What would we have done? Gone on disability? It is so short-sighted not to have these programs. You wind up needing mental health professionals, needing or going on disability or welfare. There is no reason if the only problem is getting where you’re going in order to work, on time. So, all these things are my pet peeves, all the things that I’m mentioning. It’s so important to see the bigger picture, the ripples. Again illness doesn’t just affect the person, it doesn’t just affect the family; it affects everybody.

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So I don’t think my experience as a caregiver is unique. I think a spousal caregiver has a very unique experience as compared to a child caregiver. I think the children, young children, go through hell and don’t realize it and don’t know how to cope with the nice things that people say that are all wrong; that are terribly guilt-ridden, riding, imposing, guilt imposing on these children. I had to teach my children that it’s okay to say “no” to their father, who would call them every 2 minutes to pick up a pen that dropped or get something. It’s just, you can’t do that to a child; they’re not your caregiver. That’s a whole different piece. And you as a mother watching this—seeing how it affects your children, seeing how your children are so ambivalent between wanting to help and hating to help, and how it affects them—and trying to deal with that, that’s a whole different volume.

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Weddings. Ho ho! Married off both my children. For my younger children, for a number of reasons, the wedding was far from home we had to travel yet again. In retrospect, I don’t know how I did that—how we got this multi-handicapped person to this place—but it was great and we did it. For my son’s wedding, he wound up in intensive care the week before the wedding. And my son came to me and said, “It’s my wedding. Everybody’s going to ask me about dad. I don’t know what I’m going to—how am I going to cope?” So, I decided since I had my husbands’ Power of Attorney, I wrote a letter from him basically—people don’t know how to act, so you need to tell them. By then, I was older and a little bit more experienced, so I wrote a letter that I asked the father of the bride to read to everybody who was there, saying that this was my son’s celebration, to please not discuss me with anybody, but make this day a joyous day with joy. And I had hoped by giving people that direction and having her father read it, that people would then know what to do. And for the most part they did. There were a few people who—I had one gentleman who came from out of town—he was even a doctor—who came up to me and said, “This is what you have to do. Dah, dah, dah, dah, dah.” And I said, “Please this is not the time.” “But I have to tell you.” And I said, “But this is not the time.” “But I’m leaving town tomorrow!” and I said, “This is not the time,” and I just walked away. But I couldn’t have done that 20 years before, 15 years, 10 years before. You grow into this role and you learn to realize that nobody’s going to get it anyway, so you’ve got to do what you’ve got to do. And for me, that was making my husband as independent as I could, functioning as a family as best as we could, as normally as we could although normal is a relative term.

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Okay so let me speak a bit about the isolation of the caregiver, okay. So, my first incident was when my children were very young and my husband stopped driving and I came to pick him up at the local Y. I had two children in car seats in the backseat that had fallen asleep, I was sitting in the car and my husband came out and started to walk down the stairs to the car. And I knew instinctively, it was very early in the illness, but something told me, “Don’t help him; he needs to be as independent as he can.” I saw that it wasn’t a safety issue, so I let him handle the stairs but I found it so difficult that I held onto the steering wheel so tight that I didn’t even realize until later that my palms were bleeding, that my nails had cut into my palms. And as I was watching him in the rear-view mirror to make sure he was okay, a friend rounded the corner, looked at me in the car, looked at my husband on the stairs, walked over to the car and said, “You bitch,” and ran to help him. And that was the beginning of my awareness of exactly how the caregiver is perceived when they don’t do what is considered normative. But in a chronic illness, you cannot do what’s normative. It’s not a crisis illness that’s going to go away in 6 months; this is the rest of your life and this is the rest of your family’s life, and you have to handle it in a way that makes sense for your family. And if you expect your relatives who are not around, your friends or strangers to understand, you’re going to be very, very disappointed. Most people have no idea what’s involved.

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And for me that was making my husband as independent as I could, functioning as a family as best as we could, as normally as we could, although normal is a relative term. When we were, when my children married they moved east. We were in the mid-west and they had always asked us to move closer to them, and I didn’t want to burden them with the illness. I’m a protective mother and I really didn’t want to do that. So my kids sat me down and tried to explain to me how it’s more difficult for them to be so far away every time he winds up in the hospital. The push between leaving their own families and coming and so on was difficult. And after my husband, as I said, wound up in intensive care before my son’s wedding, it was the first time my kids were there, and it was the first time I didn’t have to make decisions on my own that I had someone to talk to. And I said “Okay we’re going to make the move.” And that’s when we decided to move which was an experience in and of itself.

When you’re caregiving, most of us are at that bottom of the totem pole, and it’s in cement. And it’s in cement to everybody around you, and that’s impossible to change. You start out in the beginning of the illness because this is your natural thing to do. It’s like a…You’re going to take care, you’re going to do it, the kids are not going to be affected, everything’s going to be great and I’m in charge. Twenty years later you’re down there and you’re still in charge whether you like it or not, and nobody is going to let you change it. The dynamic is set and it’s set very early on and a caregiver, certainly the caregivers I’ve spoke to, nobody has time for themselves unless they steal it. And then somebody’s there to criticize them for it.

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This is the rest of your life, as well as your spouse’s life, and that makes the decisions you make very different. It’s not, “Okay, I’m going to deal with this for a year and then it’s going to be over.” It’s never over; it only gets worse. As soon as you think you’ve got it stable, the disease goes downhill. There are some things you never get used to. I think people who don’t experience it don’t understand.