Mike

Mike
Age at interview
63
Age at start of caregiving activities
58

Mike (63 years old) lives with his wife in an adapted apartment. Sixteen years ago, Mike’s wife was diagnosed with multiple sclerosis (MS). She had lost her brother to MS so they had an idea of the disease. Currently she uses a wheelchair and a walker and needs frequent rest because of her illness. Mike has recently taken early retirement as it became more and more difficult to cope with the combination of the demands of his work and caregiving. The couple is now adjusting to the new routine.

Having acquired quite a bit of knowledge about the disease, Mike and his wife decided to prepare for her illness and its progression by moving to an apartment designed by them. Mike’s wife stopped working about 12 years ago as a consequence of her disease.

Up until about two years ago, Mike used to travel frequently due to his work as a salesman. During his travelling periods, Mike’s wife mostly took care of the day-to-day responsibilities at home. When Mike felt that it was time to be more present at home to be able to help his wife, he notified his work six months in advance and took early retirement. Mike knew that it was not going to be easy to make the transition in his responsibilities from work to home, and he still finds it difficult to make the necessary adjustments. At the beginning he wanted to do too much for his wife, even when she did not necessarily require help, and Mike’s wife remains as active as possible. She has outings with friends, swims regularly and values her independence very much. The couple is now working on a new balance between their own time and the caregiving tasks. Mike is trying to take a step back from the caregiving and take more time for his own activities, for example, he recently learned to play golf. Mike still struggles though, with the guilt he sometimes feels when going out on his own while his wife remains at home.

Mike had completed a care for the caregiver course to better equip himself when he was a caregiver for his mother who had Alzheimer’s disease. This course was a real eye-opener for him, and it was there that he had learned for the first time that it is ok to say no and to take your own time in spite of the feelings of guilt. What was useful for him as well was that his wife kept a notebook up to date with all developments and contacts that she had had since the time of her diagnosis. Dealing with health insurance companies had taught them that all or most affaires related to their illness had to be written down. Mike had also participated in a caregiver support group from the MS society but somehow the setting and timing of this group did not work out well for him.

Mike has deliberately made the choice to say ‘“we” have been diagnosed with MS disease’. And he has adhered to this phrase, even if sometimes he gets surprised reactions from other people.  He says that it is easier to accept and deal with the situation once you feel that it is not only the care recipient that has the diagnosis but that you, as a caregiver, are also affected by the illness. Michael and his wife try to continue leading a normal life as much as they can. They remain active and enjoy their free time, as they both realize that their lives may still change in a flash.

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And in this province there isn’t a lot of… you can’t go to a book and say, “Okay, here’s a group of caregivers, and here’s a group of medical people who specialize; here’s this and here’s that.” It’s kind of a—maybe because I haven’t been looking—but it seems to be kind of slipshod and there’s really no area that you can go into and say, “Okay, I need help on caregiving. Where can I go?” I know you can call the VON or call the Red Cross, but maybe you don’t need them. Maybe you just need somebody to talk to to help guide you down the road. And where do you go from there? People that are older than us and having that, I feel sorry for them because a lot of them have trouble dealing with the phone and push 1, push 2, and push 3, and going through the codes. You just want to talk to somebody and get it over with, right? So myself, no, I haven’t had a lot of that, a lot of information through other than what I’ve picked up on my own.

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If you want your partner to get the best of care, you have to ruffle feathers. At some point in time don’t be afraid to ruffle and say, “No, I don’t accept this. This is wrong. You’re doing it wrong.” 

Where I got into this with my wife quite a few years ago, we had her in the hospital in horrendous pain; we didn’t know she had MS at the time. To make a long story short, they called me up to come down and take her home and she’s worse than when I brought her in. I said, “What’s wrong with her?” and they said, “We don’t know, we’re sending her home.” I said, “She’s worse now than when I brought her in. Why would I want to take her home? She can’t even stand up she’s bowled over in pain”. “You have to take her home she’s been discharged.” I took the wheelchair, turned it around and walked right back to the emergency room and said, “She’s yours,” and had an argument with the doctor. “What am I going to do, taking her home and she gets worse? Bring her back? I have 2 young children at home. I am not taking her home.” I turned around and walked away. It wasn’t easy, but I turned around and walked away. 

And that’s what I’m getting at; as a caregiver you’ve got to know when to stand, and men tend—again I’m only giving a perspective here—men tend to stand up and say, “No, this isn’t the way it’s going to be.” And walk away. But your spouse or your partner has to know you’re not walking away and leaving them, you’re doing it because they need the help and hopefully that answers your question.

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The same as with your doctors. You go, I mean, now we are going together because it’s just a bit easier to see [my doctor]. I’m just getting my blood work and she’s getting her blood work, but we work very close together. But yet, I work very closely with him. I don’t discuss my wife when I’m alone with him, or her with the doctor about me. But we go to see her specialist together and we work as a team together, the three of us, the three specialists together. Where a man can stand up and… like, we’re in the doctor’s office: “Well, have you seen any of this?” And she said, “Oh, No. Everything is fine.” I said, “Well Judy, No.” Like, “You’re not lifting your foot the way you were. You’re dragging your foot more. Your stability isn’t as good as what it used to be.” It’s right there. We just say exactly, I mean I do. I mean, maybe all men aren’t the same, but that’s what I do. I see what I see, and I say it.

We’ve found one problem that she’s having these mysterious pains and stuff that she was having, and we’ve dealt with a young doctor, very impressed with this man. I’m a person that, if you’re looking at me, you’re talking to me; if you’re not looking at me, I don’t want to talk to you. Now, I’m Judy’s caregiver. He made a decision 90% of the time when he sat—most of the time when he sat, he sat between the two of us and so he could do this back and forth. He would say something to her and then he would kind of look at me to see if I had any questions. There was no ‘back to you and talking directly to her’ or ‘talking directly to me’. He informed us both of what was going on and doubly made sure that we understood everything. And we had to have a test done before we had to go to Florida, and she mentioned, “Well, we’re leaving for Florida in December.” He said, “Oh, that’s not a problem. Okay, no problem; we need…” whatever. We got away to the hospital in [city in Maritimes] where we went to […] because that’s the hospital he works out of. You go in, and he’s getting Judy prepped for this operation, and he said, “Oh, yes. You’re going to Florida I see in December here. That’s great.” Where did that come from? How do you know that? Judy said, “How do you know that?” And he said, “Well, [First doctor] has it on your note. ‘Must have this done; they’re going away for the winter.’” I thought that is a far cry from where it was years ago to me. But all of her doctors are the same. When Judy and I are in there, it is very relaxed, he’s talking back and forth. We work together as a group.

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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. The biggest thing that was told to us as a couple—and anybody that’s going to be a caregiver should start doing this with the person that’s going to be getting sick or get sicker—you start a journal. My wife wrote in that journal for over 2 years every day, whomever she dealt with at the bank, at the insurance companies. And then when it came in time for the insurance, when the insurance individual showed up at the house to do the questioning, to ask questions or the questionnaire, my wife was able to take out the book and say, “Yes, on this day I talked to so and so.” 

Went through that and it’s a long story—I’m not going to get into that—but eventually the insurance person asked what is that book, and she said, “This is my diary from the day I was diagnosed, and when you leave today it will be filled out after our meeting.” And the woman just said, “Fine, no problem. We’ll accept. You are now on long-term disability.” But with that, she kept asking me why I was still there? “Why are you here with your wife?” I said, “Well, why wouldn’t I be with my wife? We make decisions together; we bought the house together, we buy our car together, we buy RRSPs together. This is our journey. This is not your journey and my wife’s journey.” She had a hard time accepting that, and in the end what I said, “Look, my job is a salesman. My job is to sell things to people that they don’t want to buy. And your job,” and I repeated this very slowly to her, I said, “Your job as an insurance agent is not to give us one penny. And that’s your job. I’m not mad. It’s just what you’re here to do; to make sure we’re not cheating you. And my job as my wife’s husband is to make sure that we get every penny that she deserves to make our life easier.” So anybody that starts under the caregiver side has to remember that they are in this together with their partner, and it’s not going to be an easy fight. And sometimes it’s good, and there were really no big problems and we were able to get what we wanted, what we deserved from the insurance company.

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If you want your partner to get the best of care, you have to ruffle feathers. At some point in time, don’t be afraid to ruffle and say, “No, I don’t accept this. This is wrong. You’re doing it wrong.”

Where I got into this with my wife quite a few years ago, we had her in the hospital in horrendous pain; we didn’t know she had MS at the time. To make a long story short, they called me up to come down and take her home. And she’s worse than when I brought her in. I said, “What’s wrong with her?” and they said, “We don’t know. We’re sending her home.” I said, “She’s worse now than when I brought her in. Why would I want to take her home? She can’t even stand up, she’s bowled over in pain.” “You have to take her home she’s been discharged.” I took the wheelchair, turned it around and walked right back to the emergency room and said, “She’s yours!” and had an argument with the doctor. “What am I going to do, taking her home and she gets worse? Bring her back? I have 2 young children at home. I am not taking her home.” I turned around and walked away. It wasn’t easy, but I turned around and walked away.

And that’s what I’m getting at; as a caregiver you’ve got to know when to stand. And men tend—again I’m only giving a perspective here—men tend to stand up and say, “No. This isn’t the way it’s going to be.” And walk away. But your spouse or your partner has to know you’re not walking away and leaving them, you’re doing it because they need the help. And hopefully that answers your question.

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It’s okay to say no. I’ve read a lot of books about [caregiving], and that’s one of the books I read actually, It’s Okay to Say No. Everything comes in stages. That was brought up from another book that I read, and I saw that in here we all go through these set of stages of acceptance of the disease, denial of the disease, acceptance of the disease, then working with the disease, and working with your spouse.

That’s a hard one to answer. I guess because, I was going say standing up for what you have to do. But I guess that’s my background anyway because I was in sales and on my own for so long. I don’t know. I can’t get, fit into that answer. I don’t know. I am who I am and I stand up and say what has to be said sometimes, and I don’t upset, I think don’t I’ve upset a whole lot of people. But people will come to me when they want something direct and want to know the answer.

As an example, going back to my old job—and I do the same thing here with people that affect my wife and I with this MS—I was called by my manager, actually the VP out of Montreal, and said, “Well [Mike]—he says Michael, how did the meeting go?” and I said, “You were going to call Mr. X.” He said, “I am going to call Mr. X,” who was another employee, but he said, “I wanted to the answer from you because you’ll tell me exactly how it is with no icing.” Thank you. This is what happened and this is why it’s happened.

That’s what I’ve learned through life lessons, being a caregiver, is to stay with those things as you are a caregiver. Just because you become a caregiver you can’t look beyond and say, “Oh no, that’s okay. We’ll work our way through that”. No. If it’s not being done right, you have that right to stand up and say, “No.” Tell them, you don’t have to be nasty, but just tell them directly “I don’t accept it. We have to find another way.”  But I’m drawing that from my past experience as you get through life and that’s nothing… part of it has to do with caregiving, and that helps me get through on the caregiving side on a day-to-day basis because I know if I have to, I can do it. And I think a lot of people—and I shouldn’t speak for other people—but just from what I’ve seen, a lot of people are afraid to rock that boat. I don’t know if that answers your question.

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When you’re diagnosed with MS, one of the first things they tell you in some of the meetings is that you’ll find out who your friends are real fast, because it’s such a long term, and then they start reading about it. And you’ll find out who your true family is real fast. Oh yeah, right. Judy has a very strong family. She comes from a family of nine and I come from a family of six, and I can’t say they’re like scalded rats running off a ship, but it took a time— I was very surprised over one in particular, and some of the other ones just basically don’t have a lot to do with her. And she said, “I don’t need this in my life. I’ve got my family. I’ve got my own friends, and that’s it. If they don’t want to deal with me, that’s fine.” 

Now, we were to her mother’s 95th birthday this July—not July, May—and the family was all together; it was no problems or anything, but they don’t communicate with her. And that’s what I find really hard to take. But I feel sorry for her because they were a close family. And that’s not uncommon with the disease of MS because of all the ramifications. I mean, there’s some people that are dead within a year, and other people who live for 25 years and you’d never know they have MS. 

And when they… and I guess it’s the way it goes with Alzheimer’s; you start with dementia. Most people start sliding away as they’re not comfortable with it. I am certainly not comfortable with it. I mean, I’ve dealt with it in my mother, and I had to because that was it—both my sister and I. And so, I got into that role and worked with it. I’m still a little antsy around people that have dementia problems. I can’t say that I run from them, but it’s difficult at times when I see family that tend to walk away.

But, and to be fair too, you don’t know what’s going on in their mind. How are they accepting this? Why are they doing what they’re doing? Are they afraid that they might get it because it does run in families? They don’t find that, but when you lose a brother to it, and then your sister gets it, and your mother possibly might have had it as part of the—I mean if you saw my mother walk in here today on her own, you wouldn’t know there was anything wrong with her. So, is that sitting in the back of their mind? Do they put it away; they don’t want to deal with it? And outside of that, family wise, that’s basically it. Other than our children—we have support from them—but outside of that, not a whole lot of support from others.

 

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I think she wants more time at this time to do more things on her own, than with my being here. That’s my thoughts. It’s terrible to say. And again, caregivers don’t seem to talk that much back and forth with [the] person that they’re taking care of about those types of things, because you don’t want to insult them, you don’t make them feel bad, you don’t want them to feel guilty because you’re not doing something. But if you tell them, then you’re going to feel guilty because you make them feel guilty. It becomes this cycle, and that’s why I say it just takes time to roll with it. A lot of that stuff is now getting past me. I’m able to say, “Well, I’m going to go golf.” And I practiced today. I went down and had golf lessons today. I come through the door, “how was the golf lesson did you do okay?” I mean, Judy’s right up on that. 

What I’m looking at, depending on how this disease goes with my wife, I know at some point—another five, hopefully five years from now, or even longer, and maybe [it] never happens—I’m going to have to spend more time here, because […] she’s still walking, but with difficulty and pretty soon—I shouldn’t say pretty soon, but it will be eventually—she’ll need a wheelchair to get from here to the bedroom. I know that’s coming, so I try to get as much time as I can away, but I can’t have too much time away either. But I do know that now and she knows that too—that that will eventually come. So, we’ll have to handle that when the time comes and I am not looking forward to that, because I need my time by myself. Every caregiver does.

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So, you’re more apprehensive, you’re always looking, always watching. What’s that person going to do that’s coming down here towards us? Are they going to be in the way? Is she going to trip when she was using her cane or whatever. So you’re always, as a caregiver when you’re out looking, me in particular, always looking at what’s going on around you.