Adapting to new roles and key issues for spouses

In this page you can read about peoples’ experiences as they found ways to adapt to their new responsibilities and accept their role as a caregiver. You will read about how caregivers talk about changes over time with their care recipient, and how spouses adapted to their new roles. Most people we interviewed had experienced a particular point when they realized that, in addition to being a parent, partner, child, or friend, they had also become a caregiver for their loved one. This did not mean that everybody was necessarily feeling comfortable with the title “caregiver”, or with their role. You can read more about this in the topic page becoming a caregiver.

Acceptance of the caregiver role

The people we interviewed accepted their roles differently. Some caregivers spoke about having to accept the role in order to deal with their responsibilities. Others felt the responsibilities were thrust upon them. Michael said, “I think you just have to accept who you are and move forward because if you stand on the sidelines and just are angry that you are in this and you can’t get past that, you’re really headed for trouble.”

Elaine went through periods of anger and feeling sad. She realized later that she had to face up to her role as a caregiver and accept it.

Transcript

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, […]

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Rowdyneko has never really been interested in a caring role and she describes it as something she is doing “kicking and screaming”.

Transcript

He’s in a transition unit now. He’s not in acute care, which is somewhat better. I do find—because I found visiting him in hospital in acute rooms I was really grumpy—I just do not do any of this stuff well. I mean honestly, I’m being really honest when I say […]

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Loss

Several caregivers experienced feelings of progressive loss because of the changes experienced in their care recipients’ health or behaviour over time. Christiane said, “You lose a bit, then a bit more, then a little bit more and more.” This is how Alyce describes loss: “I lost my husband, and the way I best describe it is ‘he went overseas and he never came home,’ and that’s the hard part.”

Losing her husband at an early age really hurts. Now, Alyce feels guilty not being able to celebrate their 25th wedding anniversary.

Transcript

I lost my husband at an early age and it hurts. It really, really hurts. And it’s not like he died where “Okay, I can go on with my life,” and “I’m grieving, I’m a grieving widow,” and get that kind of sympathy. No, I get the sympathy of “her […]

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Shayna noticed that, as a caregiver for a spouse, you may lose some of your identity as a married woman.

Transcript

So again, we did the best we could. Would I have done it differently in retrospect? I probably would have been more my own advocate as well, which I didn’t know how to be. Which is why what I do, now that I’m a widow, I try to make people […]

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Changing roles

In several situations, the roles or relationships between caregivers and care-recipients changed as the illness progressed. Many caregivers started to take over certain tasks that the care recipients used to do before, such as looking after personal finances or daily tasks like taking out garbage and household cleaning. For some, this was a difficult process; for others, it was a moment to reflect on their responsibilities and roles.

Lorna feels that the shoe is on the other foot now; it is her turn to help her husband.

Transcript

The most positive? I guess, I guess just being able to help him. He was always the type of person that took care of any, everything. Now the shoe’s on the other foot, and I can help him. And like he said about the driving, “I feel so bad that […]

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Several caregivers noticed that there was a dramatic shift in roles. Several adult children that cared for a parent noticed that sometimes they were treating them more like the child. In Kai’s situation, this was difficult because he was still young while he cared for his father. He said, “I had to watch him as a hawk, and that was a very difficult thing because I had to do it in a way that, again, I wasn’t like the parent in the room. Like, I wasn’t making sure that he needed to do this and do that. I had to do it very lightly, but I needed to make sure he took his medication.”

Spouses adapting to roles

Spouses who were caring for an ill spouse experienced other important changes. For example, they spoke about how society seemed to have different expectations for when you cared for a spouse compared to when you cared for a parent or a child. You can read more on this topic in society and caregiving.

Barbara lost many things while caring for her husband. He was never someone she expected to lose.

Transcript

The issues I had more trouble with where when I was caregiving my spouse, because the losses were so different. When you’re caregiving your mom or your dad, or your aunt and your uncle, there is the recognized thing that they are going to predecease you. That’s just the way, […]

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Several caregivers spoke about how, often for practical reasons, they had to stop sharing the same bedroom. Shayna spoke about moving out of their common bedroom: “There are definite stages, and there’s no guidebook on how you do this. I know he was upset.”

Elaine had to stop sharing a bed with her husband when he started having violent dreams from Parkinson’s disease.

Transcript

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 […]

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Caregivers described the strange position they were in as spouses. Rowdyneko said: “I’ve spent sort of one foot in the single camp, being single or widowed or whatever you want to call it, for several years, and then this other foot over here where you still have a relationship but you can’t do anything with either of them.” Richard described it like this: “You’re a partner without a partner. Or you’re a married widow or widower.”

Most spousal caregivers described a change or reduction in their feelings of love and affection for their partner. They also spoke of the loss of being sexually intimate with their partner as the illness progressed.

Anne feels she has lost her marriage. “When somebody’s chronically ill, they don’t have the energy or the patience.”

Transcript

And as far as your marriage life, it kind of just deteriorates. It’s just like a job really, because he was in pain all the time, he didn’t feel well most of the time, he couldn’t stand to be touched because he hurt, right? So it did, as he got […]

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Alyce describes it like this: “It’s a special kind of love; a love that you grow in together. I mean 25 years is a long time. You struggle with ‘Oh, I don’t know if I’m going to make it the second year.’ You don’t know if you’re going to make it the seventh year. We had troubles, we had lots of troubles, but we worked it out.”

Not every caregiver lost their feelings of love and affection; however, Matsonia, for example, met her partner when he was already diagnosed with Parkinson’s disease and continues to have deep affectionate feelings for her husband.

For Matsonia, knowing her husband is the best thing that has ever happened to her.

Transcript

In my trade, I have noticed women that would get Multiple Sclerosis and their husbands wouldn’t be able to handle that. They would start playing around on them and having affairs. And of course they’d feel horribly guilty. But you see, there’s been a change. And these marriage vows that […]

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There were also some caregivers who put some extra effort into maintaining intimacy in their relationship.

For Elaine, it is important to find a way to have some intimate moments with her husband.

Transcript

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 […]

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Some caregivers had considered divorce, but stayed with their spouse for different reasons. Sheni and Alyce both indicated that there were few, if any, other options for them to stay with their husbands. And one caregiver said, “How would people view a well spouse leaving an ill spouse? I would be viewed as a heartless, terrible person.”

Illness and taking on a caregiving role can challenge relationships. Two caregivers described how they had a relationship with someone else in the period that they were caring for their wives.

Richard met someone else while caring for his wife. He married her after his wife passed away.

Transcript

I will go further and say that I was in that situation. I met another Well Spouse and it happened by accident, but we formed a relationship and we, both of us, had gone many years without having intimacy with our partners We knew, we…how do I go from here? […]

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Joseph and his wife have become much closer after a period of separation.

Written testimony

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, to take stock, to take a step back. And every time, all of the places I visited, I visited four, five. And then I felt like not good with this, and the person in question, well she said, “I could take a roommate,” and all. So, well, I felt like comfortable with this person. So, I moved in with this person. It’s certain that the roommate was… it’s relative. There are different forms of relations that we had together during that month and a half, roughly.

There was a period of time when it separated or distances us and then now, I have the impression that it brings us closer. In any case, that’s how I see it. Okay. Now I feel closer. When I left the house, I thought it was impossible. I left, and… I leave and I’m never coming back, and my mind was made up. And when I came back, I came back thinking it’s her that I married, and it’s with her that I want to continue my life with as well. There are parts of my life that are more—how can I say this—less intense from a sexual point of view. It’s very very limited there in terms of relations. And me, I am not an emotional person. My wife is however. So, it’s certain that there was a period of time when I was even reticent of all contact. Now, I am going to be a lot more receptive, a lot closer, more present. And then, but that’s… There were highs and lows. There was a significant enough variation at that level. But I will… and even my perception of my wife, she is—how can I say this—I consider her like my wife.

Last updated: 2019-07
Review date: 2019-09