Richard

Richard
Age at interview
66
Age at start of caregiving activities
28

Richard is 66 years old and widowed. He cared for his wife for 29 years before she died in 2004. They had no children. After her death he moved to the USA where he works full time as a librarian at a university. Two years after marriage, Richard’s wife developed scleroderma, and Richard became increasingly involved in her care.

Richard’s wife developed scleroderma two years into marriage, when she and Richard were both 30. From then on, Richard was her primary caregiver. It took ten years for a diagnosis to be made, and through the years the symptoms worsened, and associated conditions developed (pseudo-obstructions, lymphedema, and eventually liver cancer), requiring many lengthy hospitalizations. After 2000, when he began to take respite breaks, he made arrangements for paid in-home care for his wife during his absence, and four months before she died, she was admitted to the palliative care ward of the local hospital for 24/7 care. During her long illness, Richard remained a devoted husband and her primary caregiver for 29 years.

As his wife became increasingly ill, Richard found it very isolating and difficult to lose the intimacy and routines of a normal loving relationship. During the time she was ill, Richard developed a personal relationship with a female caregiver that he met. However, he continued caring for his wife until the end. Richard also found it difficult to navigate social and community activities with other couples and friends due to his wife’s physical and social limitations and his caregiving responsibilities. Richard speaks about the enormous emotional and physical stresses related to caregiving for someone who is severely ill and living at home, even when he was able to hire additional help for her care. 

Yet, their time together included advocating and organizing support for other patients and caregivers. Richard found support as a spousal caregiver by joining the Well Spouse® Association (WSA) in 2000 and started a WSA support group in his local area in Canada. At the same time his wife was active in founding or joining patient support groups where they lived. Richard always supported his wife in her work where he could, often taking over for her when she was unwell or unable.

After her death Richard moved to the USA where he works full-time as a librarian at a university-specialized library, and continues to volunteer with the WSA; as such he has been the president for four years and now he is the webmaster for the association. Richard’s mission is to build compassion for and promote healing of those who care for the ill, in particular spousal caregivers.

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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? It was like, it was a relief but at the same time it wasn’t necessarily going to be permanent, but I definitely did not want to be looking around for other women. She didn’t want to be looking around for other men, so we were like a comfort to each other. And she was the reason why I moved down to the States after Vivienne died. I did not tell Vivienne about her. In some rare cases, the ill spouse, in most that I’ve heard of, the ill spouse says—and that’s just a few—says to the well spouse, “You know, I know that I can’t satisfy you. If you need to go elsewhere then do it, but just don’t tell me about it.”
And so that’s, that’s what I did. But Vivienne, our situation was different and I never told her. But my commitment to […] my second wife was I am first and foremost looking after Vivienne and I’ll be with her right to the end. After that, whatever happens happens.

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Well it’s a combination of things, I think. One is definitely just listen and speak to the caregiver—because we’re focusing on caregivers here—and let them talk, and don’t offer solutions. I have one friend who was very big into complimentary or alternative medicine and every other week he would tell me, “Have you tried this for Vivienne or that?” And finally one day I said to him, “I know you mean well, but if our doctors had heard about this, they would have told us by now. It would have been written up. And she has a chronic illness; she’s not going to get better.” And I might have said to him, but I didn’t, “I refuse to feel guilty for not going to the ends of the earth to try and cure her,” which I guess he thought he was trying to do for me.

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Definitely. Again, I say we lived in Canada. I’m saying that because I am now living in the States and I understand there’s added financial pressures down there. I was working for the federal government. I had a healthcare plan that paid 80% of your drugs. Now that sounds great! The only problem was that one year our medical expenses—;mostly drugs but also for procedures not approved by the plan—were $17,000 out-of-pocket. So that means the total expenses were like 5 times that $85,000. And there were other years like that too, close to that. So we ended up having to mortgage, re-mortgage our house to be able to pay some of these drug costs, and she was getting special treatment for another condition, lymphedema, that she got as a result of having the TPN, and having repeated operations to insert tubes into her arteries, or sorry, into her veins—feeding tube so that she could receive the sugar and the lipid solutions.

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It is isolating, and one of the biggest things that people say when they join the Well Spouse Association is “I felt so alone.” And that’s one of our, one of the slogans of the association: “You are not alone.” Because you cannot talk easily about what’s going on. I joined a choir and I’m glad that I did that, a community choir, and I was in that choir for 20 years in Fredericton, and people would, so many people would ask me, “How’s Vivienne? Is she feeling better?” And it’s always the idea, the model of illness for most people is acute illness, and then you get better— especially at our age as we started out at the age 30 with her having those symptoms and then on through our 40s and 50s. And in so many cases they just don’t say anything to the spouse, the well spouse. Some of our closest friends, they were good about that. But other people—and I had to develop a way to explain what was going on. Naively in the beginning, I thought “Well, when someone asks ‘how’s Vivienne?’ I’ll give them the clinical prognosis,” and I’d say “She had an obstruction the other day and the doctors say this and that about it. And this is what we have to do.” And then, I’m getting through about the 3rd or 4th sentence and their eyes glaze over and they look like the deer in the headlights look, and you realize it’s too much information. They want to hear that “Oh, she’s fine,” or “She’ll be better.” So I eventually, except with very close friends, of whom we had one or two, I just adopted a kind of general statement. I said—it’s like the curates egg— “She’s up and down.” Well, that’s a British expression.

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By that time she was not able to eat any solids. She was only able to eat liquids, and they put her on something called TPN—total parenteral nutrition—and it’s a very expensive therapy. And fortunately, we lived in Canada and it was covered by Medicare—although it’s not true in every province, but it certainly was covered in Ontario when they started out. So that entered a whole new stage where we became a team so to speak; I was the person that organized the ordering of the supplies and of setting it up for her to have her nightly infusions of TPN while she slept. We had arrangements if we travelled. We had to bring all the supplies with us. We had to keep them refrigerated so they wouldn’t spoil. She would have a bag of sugars and a bottle of fats, lipids, and that was our lifestyle for 3 years. I can remember one incident where we, tried not to make it stop us from travelling. We both liked travelling. We went down to the States and at the time the war on drugs was very big and we stayed in this motel, came in, pulled in late at night. I hooked her up, and of course when you do that you’re using lots of needles and other medical equipment. I had this all wrapped up in newspaper and was looking for a garbage can, and we also hadn’t eaten—it was not good. But I was looking for a place to dispose of this medical waste, and of course motels don’t have a box that says “put it here”. So I went to buy pizza, I took this stuff with me, because I didn’t feel good about leaving it in the motel room garbage and first thing I see outside this bar and pizza joint that I’m going to buy food at is a poster about the war on drugs and if you see anyone with needles report them. And so I put the whole bag in the garbage and tried to sneak in, incognito. Nobody spotted me for what I was, a user, apparently.