Elaine

Elaine
Age at interview
71
Age at start of caregiving activities
49

Elaine (71 years old) is married and has two grown children. She started her caregiving experience with helping her parents. After this, she became a care receiver herself when she was diagnosed and treated for lung cancer. Elaine’s caregiving experience then continued when her husband (72 years old) was diagnosed with Parkinson’s disease, 14 years ago.

Elaine’s first experiences with caregiving started when her mother was diagnosed with cancer. She still remembers the large number of home care professionals who came to assist her mother and how she felt overwhelmed by the whole process. When her mother passed away, after six months of care at home, Elaine took over the care for her elderly father who lived with Elaine and her husband. They moved to a smaller home when her husband retired and Elaine’s father moved to a senior’s apartment. A few months later, Elaine was diagnosed with lung cancer and, while she was being treated with radiation and chemotherapy, she experienced for the first time what it was like to be a care receiver. Three years after her recovery, Elaine’s husband was diagnosed with Parkinson’s disease. This moment evoked strong emotions in Elaine, who initially did not feel ready to accept the news of another major illness in her family. At the same time, Elaine and her husband were relieved to learn that he had Parkinson’s disease and not a brain tumour, for which they had feared.

Today, Elaine and her husband have succeeded in remaining positive and focus on what is possible to do in their circumstances. Elaine’s husband enjoys working on certain tasks around the house, even when they may be physically challenging or somewhat dangerous for him. Elaine had to learn to accept her husband’s tendency to put himself at risk and to not spoil their day by being frustrated or worried by it. Although she still has periods in which she feels regret for the loss of their former plans, she has become more accepting of their situation and ready to face up to their challenges. For example, when her daughter was diagnosed with cancer, Elaine was able to listen to her own daughter’s advice to think in terms of pure reality: “this is what it is”.

Elaine and her husband have made important adjustments while the disease is progressing. For example, Elaine has moved to another bedroom after receiving a black eye when her husband had a violent dream, another symptom of Parkinson’s disease. This has not stopped Elaine and her husband from continuing to work on their closeness by spending special times together. Elaine now appreciates the strength of her long marriage and wishes to continue caring for her husband until the very end.

Elaine and her husband have become actively involved in their local Parkinson’s organisation. Through their efforts, they help others diagnosed with the disease or those who are caregivers for someone with Parkinson’s. Elaine feels that she is helping herself by helping others. Thanks to her caregiver’s experience, she is aware of the regret people sometimes feel once the care receiver has passed away. This helps her to wake up every morning with the promise to be kind and happy that day, knowing that she has tried everything possible to go through her caregiving period in a harmonious way.

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I went through periods where I was depressed and angry with our life, and thinking, “Well, how come we have to have this? We’re young, yet we should be able to pick up and go on trips just like nothing; we shouldn’t have to be dealing with all this.” Well, that’s silly; that’s negative thinking. If it’s not us, it’s somebody else. I mean, what’s so special about us that we shouldn’t have this? And we’re not religious, so I don’t think God gives you…I don’t believe in any of that so, it is what it is. My daughter said that about herself when she was 39 years old and got cancer. “It is what it is mom. I’ll deal with it.” And I think that’s a very good statement. You have to face up to that and accept it. Accepting can take quite a long time, but once you do, then I think you can move forward and say, “All right, now I have accepted that this is in my life. Now I can deal with it the best way I know how.” And I want to feel proud of how I look after him.

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I think it’s out there if you really need to look for it. That’s where I see a big difference in other couples, because I see them pulling away from each other rather than still being a loving husband and wife. You become the…I get a lot of girls saying to me “I’m more like his mother. He even calls me mother,” although I would never have allowed that. There’s no way, I’m not your mother, but you find yourself doing more and more things. Undressing and I’m dressing him. I’m helping him in the bathroom. I’m helping his, I do his eye drops and his ointments and all the myriad of things that need done for him. His hair, his skin has problems with Parkinson’s. 

On a daily basis, I’m hands-on with him so much, by evening it certainly isn’t the time for love making; that’s not going to happen. So we try very often, if we’re going to have some quiet time together, it’s in the morning. Yeah, when you’re not as tired and I think you have to, you have to make a date and say, “Yes we’re going to have some loving time tomorrow morning.” We’ve got to set that aside because if you don’t, boy it just goes by the wayside and I find that, my husband, that’s too important to him to give up. He’s given up so much. His ability to do so much is gone, and that’s tough, it’s tough to see that.

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Parkinsonians have great difficulty sleeping. So very often they’re up and down all night long. And this was happening at a time when we were both sharing our bed and sharing a room of course. And then violent dreams started happening. Parkinsonians act out their dreams, whereas you and I in REM sleep are pretty well paralysed—we’re only moving our eyes and we can hear, whereas a Parkinsonian can act out their violent dreams. So you saw him, he’s a big man, and he got very punchy and kicked me, and one time he got up on one elbow and just gave me a black eye, and that was the end of our sleeping together, because he scared me. It really was, and he was devastated of course, and it’s just these dreams they act out their dreams. And I had been told about that and I had been, I had read about that. We had been to many Parkinson conferences where that was brought up, but I never believed it would happen to me you see. 

So we had to go with separate rooms, but it is important because you have to have your sleep. And so far, he gets up by himself and he gets in a scooter and he comes out and he sits in his chair and watches TV and dozes and he can manage that so far. Some nights I wake up and I hear him and I think he’s in a bit of distress and I get up and peak at him and see if he’s okay, but for the most part I do have my bedroom and my night to myself.

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Oh a friend that will come over and say, “[My husband] always wants to clean out his eaves troughs. Have you had them done lately?” And I’ll say, “No,” and boom they’re doing it. I’m a very proud person and when I’ve got somebody phoning and saying, “Tell me what I can do for you,” I very often say, “Well, there’s nothing. I’m fine.” It’s those simple things that kind of get overwhelming. You can go for a long time, and I can keep up with the yard as best I can. And I mean, things slip; they’re definitely the standards slip, but that’s okay. That’s…

But my daughter will come over and she’ll just start doing the dishes if they’re in the sink. She’ll go into the bathroom and see if it needs freshening up—boom it’s done. I don’t have to ask for those things. And for a person who needs help, for them not to have to ask, it is the best gift of all. So anybody that can just show up—even bring something that you’ve cooked, or phone and “I’m at the grocery store. Do you need milk? I’ll bring it right over.” Yeah, that’s an easy thing for me to say. “Yes, we don’t have any milk,” or juice, or bread, or whatever. That’s very helpful. I’m always telling my caregivers, “Don’t be afraid to ask.” And then lots of times I’m just as bad; I don’t ask. But I’m asking my kids now more than I ever did.

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I’ve been very frustrated with him because he has this very stubbornness that he was going to keep on climbing ladders. He was going to keep doing projects when I felt that he shouldn’t be doing this, that it was too dangerous. And it was always my perception over his. And then I’d get mad because he was still going to do it anyway. And I overstepped my bounds in a lot of those times and I realized he’s got to take ownership of that himself. If he feels he can still roof a shed then, I’ve got to let him do that. He has still got to feel like a man, and a viable man, a man that can contribute. That’s very important to him and I’m sure any man. […] I’m not married to couch potato. So all of a sudden, just because his legs don’t work for him that means, “All right, I can still crawl.” And he does. “I can still get in my scooter and cut the grass.” And he does. And he finds out different ways of handling things. So I’ve had to, when I spent a lot of time there being angry at him because he was still trying to do all these things, and I had to step back and say, “This isn’t getting anywhere. I’m all angry and upset, and I’m upsetting him, and he’s still doing it anyway.” So I had to learn from that and I hope I have. It’s you get protective. And I think, well, he needs this much sleep, and he should be doing this, and he should be doing that, and that’s that power and control again that you sort of have to stand back and let them still try to do what they can do. But you’re so afraid that everything’s going to be gone, so he tries still to do what he can.

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Yes, Assistive Devices Program in Ontario enabled us to buy: he has, [name husband] has a scooter suitable in the house; and he has a big old scooter that we’ve had for years that he uses outside on the lawn, and he has a trailer hitch on it even—I think he’s the only guy with a scooter and a trailer hitch—and he has fun with that outside; and then we have one for the van. So, we have a scooter larger than the one from the house, and we can take that shopping and take that wherever we need to go.

And in the van there’s a lift. So the lift, I think it was almost $4,000, and we had to pay that. But the scooter on the lift, there again, I think we only paid $600 for it, and it’s probably a $2,000 scooter. So the government kicked in for that, and of course anything spent because of a chronic illness is a tax deduction. So we always save all our receipts for the drugs that we pay, and the dispensing fees and everything. It adds up pretty sizable. Some years it’s been around $10,000 that we’ve laid out for scooters and walkers and drugs.

Yeah, it’s expensive but we’re fortunate. He’s got a good pension and we live simply and those things become priority. So if I was looking at a fancy fur coat that wouldn’t be on the priority list at all. A new scooter overrides that any day. So you just have to make your choices. I feel very badly for people that don’t have a decent pension, and they’re inability to say, buy a van to fit the scooter. It’s tough yeah, very tough.

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And one really bad time was when mom was well into dying […] Now maybe she was 25, but she wasn’t much older than that, and she was the social worker and she was the grief counsellor. So, she was going to talk to my dad about how to handle grief. And she’s saying this to my dad, and I looked at my father and he just turned and looked at me, and I knew what he was thinking “What does she think she can say to me that is going to make a difference in my life?” And unfortunately, I had to call the girl into my part of the house and sit her down and said, “Really, I understand that you want to help, but this isn’t going to help my father. You’ve got nothing in common to understand what he’s going through after being married almost 60 years and losing his wife. What could you say?” All the book learning in the world doesn’t help you then. So, only family and he looked to me for that guidance, right? Or that I knew what he was going through. So, outside help is… I’m very grateful and I see it in a lot of our apartments and group people have it, and they’re very grateful for it and you really need it if someone’s living alone. They can’t go into the bathroom themselves really safely can they? So, that’s important. But for my stage, no it’s not. We’re coping.

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Oh boy. The life lesson is that you’ve really never got your life figured out because , all of a sudden, you have—what is this saying that I’ve always lived by?…I know I’m going to forget it, but it’s about what you had planned. In order to live the life that you have planned, you have to give up those things because now, all of a sudden, you’ve got this in your life. So, to be rigid and say, “Oh, this is how I wanted it to be and now it isn’t,” you’re only going to fight the brick wall, right? So, you’ve got to bend, you’ve got to go with the flow. I always tell my granddaughters that you’ve got to go with the flow and life throws you this curve then make the best of it—make the best of it.

And for us, getting involved in our support group at first, I thought, “What are we doing here? These people don’t interest me. I’m, I don’t even want to see somebody who looks worse. I don’t want to see what happens with Parkinson’s.” Well that’s turned out to be a very silly attitude, because you are going to find out one way or another what happens with Parkinson’s. And how you deal with it is everything. It’s everything for your family. It’s everything for your friends. I firmly believe we still have the number of friends that we have because we do always try to be positive people, and people don’t hear us whining about what we do. Like people say, “I don’t know, I couldn’t do what you do Elaine.” And I say, “Well, I didn’t know I could do it till I was doing it.” So until you’re in that, why say you wouldn’t.

My daughter got cancer. Her little girls were 3 and 5 years old. Well, I was just so grateful that I was able to step up to the plate then and help her. I had people say, “Oh, I couldn’t do what you do.” Well, that’s silly. Of course you’re going to do it, or how could you deny your daughter help, how could you deny your husband help, or your mother, or your father, whoever you’re looking after? I couldn’t live with myself if I didn’t.

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We have a real large circle of friends that we still keep in touch with, have breakfast once a week with a good number of them. I used to give dinner parties all the time and I’m finding that I’m giving less and less and less dinner parties. Because by that time of the day, my husband’s not functioning very well and that puts great stress on him to have people over for dinner. The last thing I want is our friends to not want to come, and sometimes that’s very hard to see your husband or your friend not handling things very well. So, I’ve gotten away from that kind of thing. And our friends know that if they want to see us, breakfast is great sometimes and so is lunch. […] Good friends are very accommodating and it’s wonderful to have good friends. It’s an effort you’ve got to keep that. You can’t always expect people to come to you all the time. You have to be open and—I’ll explain, “It’s not so good today,” or “I think we can’t come for dinner, but if you’d like us to come for lunch that would be great,” or meet for lunch. It’s a short time. Then it’s not later on in the day. That works best.

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Oh, just for awareness. I think the more we talk about our lives, the more it can enlighten others: “Okay, I’m not so alone.” I’ve heard that from our Parkinson people that come to our group, new people: “I thought I was the only one in [city in ON] with Parkinson’s.” They’re overwhelmed with gratitude that they find that we’ve got a little community here where we’re doing our best to help people understand it, and awareness of the disease. And the more it’s talked about, more people get aware of it, the better it will be. 

So my primary focus of course is spreading awareness about Parkinson’s, and I do that in the simplest ways. My husband can walk a little bit, so he’ll get out of the car and he’s walking into a restaurant or in a clinic where he’s had to leave his scooter in the hall, and he’s walking through the door and he freezes, can’t walk any farther. His body, his brain just shuts down and he’s stuck in the door and he has to give himself time for the neurons to get going—whatever it is, I don’t even know. You’d think I’d know that, but I don’t—for the dopamine to work and for him to be able to move through that door. I take that time to have a little mini workshop on Parkinson’s. And no matter who’s sitting in the waiting room, I’ll just say “Ladies and gentlemen, you’re looking at Parkinson’s disease,” and that, you’d be amazed what happens. A bunch of grouchy people sitting in a clinic, nobody’s saying a word to anybody, and all of a sudden “My grandfather had that.” And “Oh, my uncle has that.” And now we’re all talking about Parkinson’s disease instead of everybody sort of not wanting to look at my husband, making it more stressful for him. I’ve lightened up the room, and then he’s able to cope with getting through. And very often he’ll get even clapped: “You made it through the door!” And you lighten it up and say “Yeah, we’re coping with this.” We are coping with this in that way.

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And I want to feel proud of how I look after him. When I’m crabby and miserable, he’s upset. And does that make our day easy? No, it makes it 10 times harder. So if I keep and, what I think is, I’m trying to be kind to him every day and I find if I’m kind in every aspect of caregiving, in every aspect of just living with him, my day goes much nicer and so does his. So, I keep that first and foremost. If I wake up and I’m kind of had a bad night and I think “Okay, I’m going to be kind, I’m going to do my best today,” and so that’s how I made my mind up that I wanted to look back on.