Marc

Marc
Age at interview
62
Age at start of caregiving activities
32

Marc (62 years old) is married and lives with his wife and a friend for whom he provides care. Marc’s friend was born with cerebral motor deficiency, a dysarthria, and a quadriplegia. While aging he has also developed a dysphagia and, since 12 years, he has developed a very slow form of cancer. Marc has been providing 24/7 care to his friend for the past 30 years (beginning at age 32). Thanks to a governmental programme his friend pays him for five to six hours of professional care per day.

Marc had a university degree and a temporary paid job. He felt strongly, however, that he needed some greater direction or meaning to his life. This is when he met an elderly couple looking for help to care for their quadriplegic adult son. The couple was looking for somebody that could take over his physical care, as well as his outings. As soon as Marc met them he agreed to do this work. He moved in with them. In no time, what started as a paid job grew into a very close friendship.

For six years he shared the room with his friend. After that, they moved together to an apartment in the neighbourhood. There, he fell in love with a woman who worked as an auxiliary for the neighbours. She moved in with Marc and his friend and they lived together for one year before they moved to an apartment where there would be sufficient space for the three of them. 30 years later, Marc still cares for his friend. His wife has her own work and is not involved in the care.

During all the years of caregiving, Marc states that his friend has been a major source of inspiration for him. He feels proud to be his friend and caregiver. Marc describes his friend as an audacious person who does not stop realizing his dreams and making things happen. Together they have been able to complete many interesting projects. For instance, the construction of four apartments for physically handicapped people, an autobiography written by his friend, “Des yeux pour le dire”, as well as presentations and conferences given at regional, national and international levels. Marc’s friend is mute, and speaks with his eyes. Healthcare services are not adapted to this form of communication. This has resulted in stressful times for both of them during his friend’s hospitalizations.

For Marc the caregiving is like a journey without end. He is learning to adapt and change, but it has not always been easy. Having lived through two periods of depression in previous winters, Marc feels that he has now found a certain serenity or wisdom. He developed the ability to sit down and let all tension go before continuing the day. Marc has also made changes in his own daily routine in tune with his caregiving identity, such as volunteering in a caregiver’s organisation and in a local “centre communautaire de loisirs”.

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I find that when we are suffering, we are looking for lifelines, and this is a warning. It is testing the strength of our faith. I am answering you differently now from what I would have answered you two years ago when my aunt died. I was with her for 6 months while she was in palliative care. And I cried. I burst into tears like an old lady. I cried, it's terrible. I went to see a chaplain, and his words made me feel good. He is God's representative with a big G, large, because for me it is very large and it gives meaning to what you are doing. And this is also a lifelong journey. Over the years, I will continue trying to get closer to God with a big G. This is it for me. I am convinced that for some people, it is essential to speak to God through their journey. Because caring for someone is also suffering. It is suffering through love. Being a parent is also having moments when you suffer a lot. Being a caregiver is also being confronted to this spiritual dimension. And one thing that I would add concerning the opportunity that I have to be a caregiver, it is the chance that I have to have met this friend. I made that choice. I imagine that for many people they do not choose to become caregiver. As for me, I am lucky that I have done it by choice, and I am very happy with the input of this person in my life. And I want to highlight this input because someone who needs help and who helps himself has gone more than half way for the caregiver. It is a lot of inspiration, great relief at the same time when someone helps himself. It prevents you from spending a lot of energy trying to convince him to let you help. I find this important.

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That's about it, I journeyed for six years. I met my spouse and the years went by with him who is a willful person, who is someone that will not be stopped by his dreams, who will take the necessary measures whatever how long it takes him, someone who is determined. Therefore, if you are asking what I get from this person through the 30 years, it's someone... I am already emotional. It is someone that is very inspiring, and he has done unique things, and I could easily tell you about few of them.

Like writing a book when you can't use your hands, get the resources to be able to obtain the equipment and be convinced that he has a message to deliver. Believe in something even if it can be difficult. I think that everybody is dreaming to write a book and I think that many people refrain to embark on such an adventure because there might be obstacles. The big question: Will I be able to find a publisher that will be willing... And for him, it wasn't part of his questioning. “I have something to say, so go.” It took five years; it took three years of disciplined writing where, with the help of a friend, he succeeded. But all I want to say is that this person is very inspiring for me. It is someone who doesn't know fear either, for example he parachuted. My hat off to him! I said “Ok”. Personally, my reflex was to protect him, to say “No, don't embark in this venture! It doesn't make sense, you have enough physical limitations. What will happen? The plunge, will you have an accident?” But it was the fear for a friend for whom I feel something. Through his hospitalizations, I realized the strength of character that he has.

Now the happiest moments, there would be many to tell you about because I have a lot of happiness with this person. I think that his friends are proud of him. We are proud to be his friend, because we are proud to see him achieve. And he gives a lesson to many people. And his book is one example of this. There were 300 people who came to his book launch and it was something really special. When he parachuted, friends came to see him but it is a little crazy, but may be this is it, it is to believe in our dreams. It can be done. Anything that you have in mind, it can be done if you take the means to do it. That's... that's it.

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Yes. If I had wanted material possessions, luxury and comfort, I would have chosen another path for sure. I’ve chosen this path because for me human value is more important than material values. It has always been like this and will always be. Again, what will be the financial future? I was able to put a little bit of money aside every year. We will see with the Canada Pension Plan… Whoops! We will see, it’s… It is a choice that you make. At the financial level, of course I don’t have a revenue, it is lower than average for sure, because the money for home care is quite low, it’s like a student’s pay, but it is the choice I made. And also… That’s it. Therefore at the financial level, well let’s say that… it’s more important as you get older of course because you are thinking of afterwards. Because you will lose some salary for sure. This is what I experience during each hospitalization, because my salary is from home. So if he is hospitalized, I don’t have a salary. Of course, this is what could eventually happen. Will he be in the hospital one week? Six months? Several years? I don’t know what’s coming, but it is part of… I don’t know. I don’t know what to answer because it’s not the case at the moment. I have stable revenue at the moment, it is small revenue but with the three of us contributing, we are able to pay the bills. We are lucky to have an adapted minivan because when his parents died they left money that allowed buying a minivan. We are lucky that this money allows him to travel once in a while. Of course for other trips, it’s fund raising, grants, and we have to knock on doors. And also some trips are paid by the conferences. Because it is a lot of work to organize fund raising activities through foundations, associations or donors. What will happen with his health, we’ll see. We will adjust as we go along. I can’t tell you. There is no need to worry. We need not to worry unnecessarily. It’s exhausting to worry about the future. We need not to worry unnecessarily.

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For sure that as far as my health, I’ve had some things. Well, I had to see the chiropractor three times for my back, but three times in three, in 30 years, sorry. And I had two operations for hernias as well—that’s related to handling heavy objects. But again, I relativize, twice in 30 years. But what shook me the most, it’s the last few years where I had to live two depressions and I had to find a path so that I am happy through this. Worrying about him. So, it’s certain that it was the family doctor I went to see. The first reaction was with medication. But at the same time, one has to take steps and take care of oneself. At that moment, well I went for walks with a friend regularly, twice a week. I joined a recreation center to play table tennis. But after three months, I realized, “Good, ok. That’s enough.” But I searched, I searched, I searched because when you have depression you… Well, you’re not happy, you become more silent, you affect your partner, you affect you friend. And you don’t live it alone. Others feel it. Others would really like to help you, but they don’t know what to do. My friend would always tell me, “Go! Go! Go!” Yes, I want to but I don’t have the strength. So, that’s it. I journeyed through it, in the last two years.

And now, it’s crazy, I have a certain serenity or wisdom that I’m also surprised to have. I expected during the winter period, because the first two came during the winter, and also in the context of illness and death in my family, and illness with regards to my friend. Hospitalization too, it’s linked to my sensitivity that’s for sure. So, I lived through that to find, well… for me, I realized that volunteering, it’s volunteering that is my key. So, I volunteer at the recreational centre.

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Every time I knocked on the door, sometimes I knocked on the wrong door. [If} The person can't help me, she will tell me. As a caregiver, I don't know what to tell you. Personally, as I told you, I had physical problems, like anyone else. We solve our problems. It is more with the depression that I had to navigate more. My family doctor and a lot by myself, because of course, after many years you know more easily where to knock and whom to ask.
For example, since September we're meeting with a pivot nurse. I didn't know what a pivot nurse was. And a pivot nurse is person that has a magic wand. The one that we met, thanks to her, we quickly had medical prescriptions, medical appointments and specialized equipment. I find that it is extremely important to meet someone like this. Knowing that it exists. I never met one before.

 

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A few months ago there was a difficult 2-month period during which he had to make a decision. But to make that decision, we had to consult with three plastic surgeons and radiotherapy surgeons. He had to have a scan, x-rays and an MRI and then, after the three specialists had a teleconference, he had to return to each of them, with the insecurity and a... how should I say? And a build up to the point “I made my decision”, it comes a time where I have to make my decision. Now this is a period, the most difficult period is not knowing where we are going. What will it imply for the sickness? Also, how am I going to manage this? Will I still be able to eat by the mouth? Will I have to be intubated and eat through a PEG? For me, it is the energy level involved in a healthcare system where the staff changes every eight hours, where the staff changes during the week-end. All the efforts I put in communicating on behalf of my friend, to be understood. The tricks for... just a sheet of paper to put besides his bed. Yes is when he looks down, no is when he looks up. Even if you write when he looks there or when... No, they do not have time for this. Even if you think, “Now you need a different call bell to call the reception.” Because he cannot use his fingers, thus we must find, take steps with the occupational therapist to find a different call bell. Then you have to alert the receptionist and tell her, “Well, he doesn't talk. If you hear his bell, do not ask him what he wants. He will not answer back.” So it is many small details like these that cause... Well, you go through the network. Well this is it, when you don't know in which hospital, and then in the other hospital, and again in the other hospital, you end up in ethics also, at the CLSC, are we going?

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Because I’m sure that there are people who are at a loss with the situation, because it’s all new, who haven’t journeyed as much as my situation of 30 years has made me journey. And knowing that at the CLSC, they can help you with respite, family support, specialized equipment. To know that the rehabilitation centre can help as well. To know that in the hospitals there are specialized healthcare workers who can help you. It’s certain that you go from one place to another, but to have everything centralized in one place as far as resources, that’s something that I could tell you, “Here’s this, that, and the other.” But as a general rule to answer your question, and in the context of this interview, I imagine I’m trying to summarize as well.

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So, the two months I am talking about, well, we had to meet with the community workers, the occupational therapists from the three hospitals because we didn’t know in which hospital it would be done, thus repeating the process with each one. We lived it once; maybe we will live it a second time. We don’t know what the future holds for us. One thing is certain; we’ll continue our journey through this. “When there is a will there is a way.”

How do I see the future? One day at a time, I think. Of course when you feel that your health is declining and that, in his case, you live with a cancer that you don’t know just how far it will grow, you certainly question yourself about the spirituality, the suffering, on how can I keep my commitment, how do I see the future? I see the future with a commitment to the end, right to the end. It doesn’t achieve anything to worry about a future which you don’t control in any way. You must let… You must place your trust in life; you must surrender yourself in a certain way. You do your best as you go along. And que sera sera. I mean, we managed in the past and we will manage in the future. We have to have some trust, we must continue our journey through this, and it is important to continue, because when you love, you love. And love is unconditional up until the end. And even after the end, the person that left will continue to inspire you and that is the way it should be, because his legacy will lie deep within you and help you grow. So that’s how I see the future. The inspiration that he gives me now will continue to inspire me, will continue to make me grow after he is gone. And I accept what will happen. Of course, of course that… That’s it. I don’t have anything more to say I think.

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Well, we like travelling abroad. We travelled a lot. And we have two trips coming up, one which is for a conference. We are involved at  the international level with the mute. [My friend] is part of an international  association and we participated in several conferences in Spain, Switzerland, and the United States.There is one coming up in the month of July in the United States. And it’s been a while due to the care needed for his condition; we have a project to go to France on the shore of the Mediterranean, to the Côte D’Azur. And that, that’s something that helps us get through the more difficult periods as far as his healthcare.

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So, there are some that learn just like that. That’s maybe the road I took. I learned like that. And it’s never all done like that. It’s never finished, it’s a journey. So, I’ve reached a point where I have much more serenity. I got up at night. It’s positive what I have in my head! I sing to myself and I fall back asleep. I mean, I have a lot of caring time to give him, and I give it. And it’s not always easy. I need time for myself, but it’s like I learned that each instant you can rest, do it. It’s important. Clear you head. You relax nonetheless, even if it’s just 15 minutes. Just relaxing and clearing your mind. Just commune with yourself. So, what do I do? I find that we succeed in finding happiness through a relationship that can be time consuming, but obviously it depends on the care recipient a lot. In my case, I chose to be a caregiver. I chose that and I will go right to the end. I have the sense of responsibility, of my father. I will continue with the sense of duty. And I have the sensitivity of my mother, I do what… I find that we are in a world where we have to help one another. It’s simple. One has to be open to difference. One has to be tolerant. The example I have, it has to do with physical handicap, but that goes further than that.