Joseph and Marie

text
Age at interview
60
Age at start of caregiving activities
56

Joseph (60 years old) cares for his wife Marie who is born with numerous complex chronic health issues. Joseph has been retired for the last three years and assists Marie with her daily needs. Furthermore, Joseph is active as a volunteer for many different organizations. Marie has lived independently for most of her life yet in the last five years Joseph has become more involved in her care as her condition worsened. She is still able to do most activities on her own in the house although she needs help on a daily basis due to chronic pain and fatigue.

Joseph and Marie find it hard to identify the exact start of Joseph’s role as a caregiver, in part because they perceive the care and caregiving throughout the last eight years differently. However, the care for Marie started to intensify when she entered a period of regular hospital admissions about five years ago. 

Joseph, who was still working at that time, tried everything he could to accommodate Marie in the best possible way. He found it a busy period where he tried to combine his work with his caregiving tasks. For example, he would interrupt his work to pick up medications and bring them to their house, try to go to the hospital on a daily basis during admission periods, and he tried to always be there for her in times of need.

“Patient, calm and a closed personality” is how Joseph describes himself before and during that period. Then he reached a point where everything changed. A doctor came to visit Marie in-hospital and they told him that she was suffering even more pain than on the day that she was admitted. The doctor thoughtfully looked at her patient record and asked: “do you think she can return home today?” After this event, Joseph screamed and cried in the car on his way back home, something he had never done before. He started dreading the responsibilities at home, at work and in caring for his wife. Joseph then connected with an understanding woman through the internet and their relation became so close that he decided to leave his wife and the house he was dreading so much, to live in the apartment of this new woman. His own wife, out of love for him, felt happy in a certain way in that she hoped that this would help stop his suffering. After six months, the separation period ended and a transformation in Joseph had begun. He realized that his suffering was not caused by the situation but by his own perception of life.   

Back home with his wife, he found a better balance between providing care and his own personal interests and activities. Also, thanks to regular visits to the caregivers support group and the dépendants affectifs anonymes Québec (DAA), he is now able to say “no” from time to time, to requests from his wife, and has also been able to find more practical solutions to complete his caregiving  tasks. For example, he recently found out that the pharmacy has a home delivery service, which has helped enormously with logistics.

Joseph’s transformation has opened him more as a person. The couple has grown closer together and deepened their love and compassion for each other. They have now reached a balance in their lives where they enjoy the beautiful moments while Joseph performs his caregiving activities in a more harmonious way.

Text transcripts

So I told myself, “I have to leave from here. I can no longer live in these conditions.” I wasn’t able to anymore. And then I was… And then, well that person with whom I was involved with, it was a person that was…In any case, it isn’t recommended, let’s say, it’s not saying much but anyway, I will use the words that are the smoothest and so… This person, she had... had an apartment at one point, and it was a four and a half, and there was a room available, and me, I was searching for a place. Because I took some steps to find a room somewhere, to go live, and live some experiences outside… more

So I told myself, “I have to leave from here. I can no longer live in these conditions.” I wasn’t able to anymore. And then I was… And then, well that person with whom I was involved with, it was a person that was…In any case, it isn’t recommended, let’s say, it’s not saying much but anyway, I will use the words that are the smoothest and so… This person, she had... had an apartment at one point, and it was a four and a half, and there was a room available, and me, I was searching for a place. Because I took some steps to find a room somewhere, to go live, and live some experiences outside… more

Listen, I think that searching for help, not to try to respond to all the needs on your own, and to… to go get some, whether with the CLSC, whether with the caregivers. There is a lot, a lot of progress in Quebec that took place in the last two years regarding caregivers. I say two years, but in [region in QC], it has been around for a long time. I didn’t know that. And there are lots of people who are family caregivers and who don’t even know they are family caregivers. So, for sure they are not going to use this service. And then, but me, with the support I received, it’s support from… more

Listen, I think that searching for help, not to try to respond to all the needs on your own, and to… to go get some, whether with the CLSC, whether with the caregivers. There is a lot, a lot of progress in Quebec that took place in the last two years regarding caregivers. I say two years, but in [region in QC], it has been around for a long time. I didn’t know that. And there are lots of people who are family caregivers and who don’t even know they are family caregivers. So, for sure they are not going to use this service. And then, but me, with the support I received, it’s support from… more

And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I… more

And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I… more

It was in 2007, January 2007. And so, I was working two days per week, and was on sick leave three days per week. That worked for me and in that context, I asked for pre-retirement. It was about 32 years… I was in my thirty-second year of work at the hospital. So, at that moment, I made a request for pre-retirement, which according to the documents was like one year. So you make you request, and next there is a delay. Then they accept, then it is for a year, then after that you can take your retirement.

And so, it was about February that I made my request, and in March I received a… more

It was in 2007, January 2007. And so, I was working two days per week, and was on sick leave three days per week. That worked for me and in that context, I asked for pre-retirement. It was about 32 years… I was in my thirty-second year of work at the hospital. So, at that moment, I made a request for pre-retirement, which according to the documents was like one year. So you make you request, and next there is a delay. Then they accept, then it is for a year, then after that you can take your retirement.

And so, it was about February that I made my request, and in March I received a… more

Yes, oh yes! That’s it, it was… I stopped working. Well, I worked part time. The organization that I worked for was really receptive, very understanding. My boss was super helpful in that. I don’t know what she thought of it, but she took it appropriately. She offered me the necessary support, the employee assistance program was there. Given that this is an organization that deals with psychiatry, well theoretically, they should be understanding, but that doesn’t mean that all the administrators are. But there are predispositions to that. And so, I received great support from my place of… more

Yes, oh yes! That’s it, it was… I stopped working. Well, I worked part time. The organization that I worked for was really receptive, very understanding. My boss was super helpful in that. I don’t know what she thought of it, but she took it appropriately. She offered me the necessary support, the employee assistance program was there. Given that this is an organization that deals with psychiatry, well theoretically, they should be understanding, but that doesn’t mean that all the administrators are. But there are predispositions to that. And so, I received great support from my place of… more

And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I… more

And I remember once… I’m on my way to see her at the hospital at lunch time or in the morning, because then, that was the time when the doctor was doing his round, and it was possible that she might be getting discharged and all that. So, I arrive at the hospital, and then, she tells me, “Ah! I’m really not feeling well this morning.” My wife was there, she had been admitted four days about, three, four days—and she said, “I feel worse now, in any case, I feel less well than when I arrived at the hospital.” I said, “Oh! It’s not going well.” And then the doctor comes to do his round, and I… more

We are perfectly aware that, for example, we are going to Germany in the fall. Well, we are perfectly aware, I am not insurable. So, we know that maybe I will go, maybe I won’t, we don’t know. But we’ve accepted that, we’ve come to terms with that, even if we… We don’t want to keep ourselves from living in case something more serious happens to me. We agreed to make some concessions. to say, “Well okay, we will lose money”. We will lose money, that’s all. To date, it hasn’t happened. But it’s hard for me to travel because it’s tiring, you know. It takes me two days to get over it. But… more

We are perfectly aware that, for example, we are going to Germany in the fall. Well, we are perfectly aware, I am not insurable. So, we know that maybe I will go, maybe I won’t, we don’t know. But we’ve accepted that, we’ve come to terms with that, even if we… We don’t want to keep ourselves from living in case something more serious happens to me. We agreed to make some concessions. to say, “Well okay, we will lose money”. We will lose money, that’s all. To date, it hasn’t happened. But it’s hard for me to travel because it’s tiring, you know. It takes me two days to get over it. But… more

So, I came back here, my wife was in the hospital and, well, I slowly familiarized myself with the environment. It took some adapting to return. And so, that was… Then next, well, my partner returned and we started in terms of our relationship… a little different as well as seeing thing and I… Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she… more

So, I came back here, my wife was in the hospital and, well, I slowly familiarized myself with the environment. It took some adapting to return. And so, that was… Then next, well, my partner returned and we started in terms of our relationship… a little different as well as seeing thing and I… Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she… more

Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she made a request, I tried to respond as much as possible, and then… But there were requests that weighed me down, or that I found heavy, that I had difficulty to respond to, or I was like reacting to, but with my view of things, it was to allow, as much as possible, to experience pleasant things.… more

Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she made a request, I tried to respond as much as possible, and then… But there were requests that weighed me down, or that I found heavy, that I had difficulty to respond to, or I was like reacting to, but with my view of things, it was to allow, as much as possible, to experience pleasant things.… more