Christiane

Christiane
Age at interview
61
Age at start of caregiving activities
51

Christiane (61 years old) is married and has two grown sons from a former marriage. Her husband (80 years old) has chronic obstructive pulmonary disease (COPD) and Parkinson’s Disease. Christiane has just made the difficult decision to place her husband in a long-term care facility as she is no longer able to provide the necessary care for his increasing dependence. Christiane worked most of her life as a child-care worker in a daycare but was recently obliged to retire due to her own health problems.

Christiane’s caregiving started ten years ago when her husband was diagnosed with Parkinson’s disease. Due to his illness, Christiane’s husband became isolated to the point of refusing to leave the house even to visit the doctor. Christiane pleaded for professional healthcare support: a social worker and eventually a doctor began to pay visits to their home. Nevertheless, her husband’s condition continued to deteriorate until he needed 24/7 care.

Christiane experienced two particularly difficult periods when her husband became incontinent and when he started to suffer from dementia. She felt unable to leave her husband for a single moment. In order to socialize with friends and family, she had to arrange for a privately paid care provider for her husband, which was financially difficult. She remembers one period when she could not leave the house for nine days and had to ask someone else to do their shopping. She resorted to walking up and down the stairs of her apartment building just to get some exercise herself.

By this time, both the physical and mental aspects of her caregiving situation had become a major challenge. Yet Christiane still did not feel ready to let go of her husband’s care.  A main reason for this was that she had had some negative experiences with the quality of care when he was hospitalised and then in respite care. Finding help in the health system has been a time-consuming process for Christiane. She feels that she has had to practically discover the caregiving services herself. Hospital staff gave her little information regarding resources, access to support services and financial assistance. In spite of her own medical issues, she has had to provide most of the physical care that her husband needed due to a lack of availability of home-care services. Only last year Christiane began to receive support at home from the local CLSC, who gave two hours per week with things like helping her husband shower.

A few months ago Christiane’s husband was offered a place in a long-term care facility. Following a few bad incidents at home, she realised that she was no longer able to meet her husband’s needs. It was time to make the difficult decision to have him placed. Nevertheless, this long-term placement has not fully released Christiane of her caregiving responsibilities. She still visits the care facility daily, as she worries about the care her husband receives, and she still struggles to manage their financial situation. 

Today Christiane finds a lot of support in a local caregiver’s organisation (l’Association des personnes aidantes). She tries to attend most of their activities in order to enjoy her much-needed breaks.

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Based on my experience, what would I say to the caregivers? “Listen, go to the associations, you will hear about others, and they will give you tricks. Don’t wait for the CLSC, you have to call them. And the government, same thing, you have to call them, you have to… Otherwise, you get nothing… you get nothing.” How did I find out — I will verify when I do my income tax return — that it is possible to have a monthly amount for the caregivers. I didn’t see it, neither did my son. I will look into it when I do my income tax return. It would be… May be we should all get together and write a petition, because you don’t get richer, you get poorer. You know the people outside are lucky, they have their pension and they have nothing to do. Yes, they have nothing to do, but they have expenses that… that you didn’t have usually. Like this Summer, I rented a wheelchair, but it costs $60 per month. They tell me “Well, keep your receipts for your income tax.” Well, I don’t pay income tax so they don’t give me back that money! You know what I would tell them, it’s to go to associations, not to stay alone, talk about it, do not isolate yourself because it’s even worse.

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Like now, he didn't like it yesterday when there was a new person, because he doesn't remember who came and who will come. Because he is not allowed... Blocks of 4 to 8 hours. It costs $15 for an 8-hour day; you leave at 12 p.m., you come back at 8 p.m. You have to be back for 8 p.m., it can be in the morning up to... whatever. He didn't remember, that is why he didn't want to have supper. When I came back, the patient attendant was feeling badly “he didn't want to have supper.” Well I said, “Anyway, he had a good lunch.” And I said, “he is still corpulent.” In fact, he wasn't that hungry, he only had oatmeal when I came home. He was waiting for “his wife”. “My wife will give me some.” “My wife will do this.” “My wife will do that.” It's always “my wife”. Even if I prepared it. I had made the soup and put it in the fridge. “No, I'm waiting for my wife.” Well, I have to make him understand that I need to have some rest  if I want to continue keeping him with me, I need to take a break. And I must be able to take breaks without worrying. You know I can't always spent $45 whenever and say “Well now, I am resting”. Like now I asked for it, I will bring him to see them because they are Blacks, I don't know how he will react. Before he was reacting well. Before he didn't see the difference between a White person and a Black one. You know, they are human beings, but now he is more... Homosexuals, he is reacting, you know... He didn't do that before, but now with the sickness. Well, you have to deal with this too. As I had hired a patient attendant, no, he didn't want to, he said that he was homosexual. I said, “Yes, but did he touch you?” “No, but...” and I said, “Yes, but he is looking for someone his own age, not an old man like you.” No, he didn't want to, he didn't want him to care for him. I had to hire another one. So it is always... We don't have the choice to say “Well...” You know, he wants [...]. No, he has to want it.

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When you receive the bills, by the time you get an answer for the cost exemption, you receive bills! The first bill was from January 10 to 30, 31. The month of February was $1711.13. I almost had $4000 in expenses. Eventually you say, “How will I make ends meet with this?” Up to a point that when I got the answer, I looked at the letter; I said, “I don’t believe this.” I called. The man who answered the phone told me “Give me your name and the person who did the calculation will call you back.” Within 10 minutes, the man called me back. Then he tells me “Yes, yes, that’s it.” He said, “The amount is correct—$347.58.” I burst into tears. But it’s good news. I said, “It is very good news, but I have been stressed for the past month and a half because I didn’t know what was going to happen.” I said, “We have no idea how much money they will take.” I said, “They even suggested that I may have to go on welfare.” At 62 years old, I would not accept to be on welfare. It’s quite a drop. He explained the calculation to me. I said, “It’s the same for everybody”, and he said, “Yes”. It’s so stupid. They take both revenues, take off $1200 for the couple, then after that they take 25%, but if they had told me that in the beginning, I would have had an idea. I wouldn’t have been so stressed, because I didn’t even know if I was going to be able to pay my rent. My children were thinking of contributing to give me the balance of the money to pay my rent. It’s not a joke. My children are not responsible for this; it’s not even their father. I find that we are not supported, really not. We are left in the cold. If you manage, good. If not, well…

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Because I know that it helped speed up the number of hours—I don’t know if it’s me, but I will tell you that yes, it’s me—the number of hours of respite that they give. But did you see, the gentleman who was here earlier, he should be giving me two hours with the bath, so I can go do the shopping, the grocery, the pharmacy, the cleaners, the bank, but they can’t because he doesn’t have the time. They are just three men in the area. They should have the possibility of hiring more help. Because, it’s been one year since the month of July that I was with the CLSC, and I still don’t have my respite hours in the daytime. I had them for a short time, because I found a employee myself, but he fell ill, so… a relapse of cancer, so he could no longer give the bath, so he would give me a little respite. After that he started chemo, so he came here one day, and he was green. I said, “No, we won’t let you do this.” It’s the only time that I had respite, from him. He was paid by the CLSC, but it was me who found him. But if they advertised for that!

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So, there was the placement for assisted living, they told me in the month of… Well when you came, it was the 23rd or 27th, I told you, I remember, I saw that in the notes. And then, before the holidays, just before the holidays, they told me that there were still three before him. So, I said, “You won’t call me during the holidays, surely…” But she was telling me, “You can refuse once, then the second time you refuse, well, he goes back to the bottom of the list.” So, they called me, the Friday that was the 7th or 8th of January, and he left Tuesday, the 10th. So I said, “That’s fast, I am not ready for that,” because you have to prepare for that. Me, it wasn’t… I never wanted to put my husband in assisted living. But, he was falling all the time. So, the last weekend, he fell Saturday, he was… he was making the bridge, he had his shoulders in bed, the rest of his body below. Folded. Saturday, Sunday, he was like that. In the night of Sunday to Monday, I had trouble sleeping because it’s stressful to make that decision all alone. I don’t have any kids with him who can tell me, “Well yes. No.” So… Then there are some who say, “Well yes! Put him in assisted living.” But in the end, it’s to get rid of him. So me, that wasn’t my case. So, I believe in that, me. I asked my parents to help me make my decision.

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And you have to be there regularly, because… some stupid things happen, it doesn’t make sense. One day last week—it was very, very hot—a long sleeve shirt and a tank top under. He has some nice short sleeve shirts. So, I had to hide his long sleeve shirts. And the tank tops, I hid them all. Another day, I arrive and… I go to put his socks in the clothes hamper − winter pyjamas. He was sleeping with long sleeve, winter pyjamas, flannel pants, and the top is in thick cotton. But I said, “What this? What’s going on in their heads?” I have to call them regularly. I spoke with them again this morning. 

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And my social worker tells me, she says—because at one point, I found, I knew that there were employment service vouchers, because you can hire someone who has the expertise, for example, to take care of your husband, and who is paid by the… by the CLSC. It’s me who discovered that! Through talking, like word of mouth, you know. And when I spoke to her about it, she said, “Ah! I wasn’t aware of that!” So, I did the follow-up, I searched, I called, and in the end I learned that yes, it existed. So, I called her boss, and I told her, “Yes, it does exist, this is what has to be done, and no more problems.” So she calls me back and was not in a good mood. She said, “You went above my head.” “Because you didn’t have an answer to give me, I had to find the answers.” So I told her, “I got my answers.” Well, she said, “I will hire you as a resource person.” But for me, that wasn’t a compliment that she was making, because me, I had the strength to do it, but my sister-in-law, she wouldn’t have the strength to do it. 

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I learned this, not through the CLSC, by the [city’s Association des personnes aidantes]. They told me, “How come he doesn’t have two partial baths. He should have two showers and two partial baths, at least in—between showers.” Then I called them, “Oh well, yeah, maybe! We will look up his case and… ” You are always, always, always… It is annoying, it is exhausting! He was in the hospital for five weeks, every morning I was making phones calls to try to find solutions for this, and for that. The CLSC, you saw how it works? Do you think this is a man who is interested in going shopping? To go for a stroll outside, to go out? To see other things? No. Once he was in the hospital and I brought him in his wheelchair to the exit. He tells me, “Go by the news stand, I want to see the colors.” Then I thought, “So he might be interested if he didn’t have to make the effort of walking because of his breathing and his Parkinson’s.” He couldn’t have a wheelchair. I had to fight to get one.

I demanded that he be seen by an occupational therapist, a physiotherapist, and a neurologist. Then they signed the papers and he had a wheelchair through the rehabilitation hospital, otherwise he wouldn’t have had one. So, I was always fighting because they were telling me, “He doesn’t need it in the house.” But look at the furniture in the house! He hangs on to the furniture, and when he doesn’t hang on to the furniture, he hangs on to me. And thus, I was finally able to have a wheelchair.

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And I took a sleeping pill. During the night, his breathing woke me up because he was still like this. And then, when he is in this situation, me, I am not supposed to lift anything heavy. I have a problem with my spine. So I put my two feet before his feet, I put my hands on his knees, and then I tell him, “Lift you bum”. Then I push him a little. I move forward a little until he is lower than his bum in the bed. Then I take one leg and I put it in the bed. I take the other and I put it in the bed and then I tell him, “Push your bum”. Then I push on his pelvis so he would be in a normal position. Hence, I have done this three times during the same week. Therefore I told myself, “What will happen the next time?” Now he doesn't know how to get out of bed anymore.

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So with the caregiver's association, I don’t know if other cities have this, [the city’s] caregivers association. I don’t know if there is a caregivers’ association [of another city]. I don’t know if that exists in other cities, but they gave me a helping hand. Like when I have an outing with them, they pay for the sitter. So, I told them, “Register me to all the conferences, I’ll attend them all. I have to get out of the house, because it’s too hard physically and morally.” Because you look at it and you don’t recognize it. And with me sometimes there are reactions, he’s angry, he’s sulky, he doesn’t do that with others, but with me.

And with the caregiver’s association of [the city], well, I have conferences, classes that they give, they pay for the sitter, so that gets me out of the house a little. And then, they organize evening or lunches or… It gets you out of the house, and there with the others, I have a respite of eight hours, it costs me $15. There comes a young man who takes care of my husband. I go, and that’s it.

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Because people don’t want to come over, it’s not interesting! Him, he sleeps. And you, well, you have thing to do when he’s sleeps. You take advantage to do the things that you can’t do when you are—when he is awake. Because “I want this”, “I want that”, “come sit”, “I’m tired of seeing you move around”. So, friends distance themselves, so you don’t have a social life anymore. You don’t have a family life anymore. And you are isolated completely. So, that’s why the associations helped me, and it’s them too that informed me ofcertain rights that I had, that I didn’t know of.

If there isn’t anyone who comes to see him, at one point you become… Me, sometimes, I tell myself, “I have outings.” I tell myself, “My God, I have no more topics of conversation. I don’t see anybody. I don’t work anymore. I don’t go out.” I said, “What do I have to talk about?” You don’t have anything to talk about, so you feel belittled and put yourself down.

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It's the same thing. He was getting up at night and falling. Now, try to lift this. He is all flabby. And he didn't want anybody. Because now, “My God, I have no choice, I have to get someone. I cannot leave you on the floor.” Which means that you have to bother a neighbor, and then you... If we had a budget for this, then you feel less embarrassed. Like when I leave to go to my courses or at conferences and he is paid, although he is not paid very much, then I feel more... I think to myself, “At least he is paid to be here.” He would probably do it voluntarily, but it's me who feels embarrassed. I am not the only one who feels that way. Some people never asked anything to anybody, and then, they have to! They do not have a choice but to ask. You don't feel good about this. You depreciate yourself and you think “Why are there so many people, elderly people who follow one another.”

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It’s like yesterday, I went out. I went to my sister-in-law to clear my head, and I had someone to care for him, well I didn’t… I fell asleep at 2:30 a.m. but at 3:30 a.m. I was wide awake and I was watching the clock. At this rate, I won’t tough it out for long. This is why I say, “It is absolutely crucial that I have another respite.” And they do not tell you how many days per month, per year you have the right to, which means you refrain from taking too many days. “All of a sudden I need more.” Because my concern is if I get sick, what will happen to him?

Text transcripts

Like me, I didn’t have him sign a mandate in case of incapacity because, again, it costs money, and it’s takes time.  A mandate, you know in the end, when you are at the hospital, the doctor can tell that this man is not capable of staying on his own. Why do we have to go through the Court, then this and that, and then it costs you the fees. They told me it could cost as much from $1200 to $1500 to homologate a mandate of incapacity. But, to date, he lets me, “If you say so.” But he could… like if let’s say he got sick, I call the ambulance, if he says no to… more