Barbara

Barbara
Age at interview
62
Age at start of caregiving activities
40

Barbara is single, 62 years old, and lives alone (with several cats and a dog) above a bakery. She worked as an entrepreneur in the retail and food industry and is now retired because of diagnosis of multiple sclerosis (MS) although has been very active with volunteer work for caregivers. She looked after her mother, father, husband and, aunts and uncles over a period of 20 years. Barbara provided care for her mother who was blind and her father who had several illnesses (COPD, CHF and stroke). Barbara’s husband developed rheumatoid arthritis and she was his primary caregiver for many years, although they no longer live together.

Barbara was diagnosed with MS about 20 years ago, and after a period of serious illness, her own health is now more or less stable. Barbara has been a caregiver for many years for many different people in her life – her father, mother, aunts and uncles, and her husband. She describes her role as a caregiver in these situations as more of an organizer and advocate for her family members, for example, providing assistance with interactions with the healthcare system and in making decisions about living arrangements. Helping in this way, however, has been challenging as many of these events were happening in the same time period, along with the eventual separation between Barbara and her husband.

Barbara feels that the stress of her caregiving role has taken more of a toll on her mental health (rather than affecting her MS). She speaks about the differences between caregiving for a spouse versus an older parent, stating that there is an anger and isolation that comes from the losses incurred by having to care for a chronically ill spouse – for example, loss of relationship, intimacy, and mutual caring.

Barbara would love health care professionals to know and to recognize that caregiving is like a circle where you find different kinds of health care professionals, the care facilities but also the family caregiver. If the chain of caregiving surrounding the patient suddenly breaks, an essential part in caregiving is missed. This is why it is important to make sure that there is sufficient support and recognition for the caregiver to enable him or her to continue the care.  

Barbara has found enormous support from participation in local caregiver support groups as well as from the educational programs run by these organizations. She has also worked hard to give back to these groups as a leader and organizer. Barbara feels that healthcare professionals should value and respect more the role that caregivers play in helping to care for patients.

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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, except in unfortunate cases, that’s the way that that the world works. So, I think your nature takes over. The reasonableness, you’re taking care of somebody who’s considerably older than you are, and you can be in denial until your purple, but the fact remains they will predecease you.

When you’re caregiving your spouse, adds a whole different dimension to caregiving. You’re not just losing somebody you expect to lose, you’re losing all of the marriage stuff. You’re losing simple things like hugs and touches, being able to communicate about decisions you’re going to make, or that you should make as a couple. The pain is so different than it is when you are caregiving for a parent. So, it’s much more layered. You hurt in so many different ways. There’s an anger in caregiving a spouse that doesn’t usually exist when you’re caregiving a parent. So it’s a very complicated, very complicated series of losses.

There’s this… If you’re talking about being really angry at your spouse because he’s got arthritis or heart problems or he’s whatever, you’re not being a good spouse. You’re just not. You’re there in sickness and in health. Suck it up. Just do it. And yeah, it leaves you very, very isolated with all of your feelings about caregiving a spouse.

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I would love it if healthcare professionals had at their fingertips almost a package of “Okay here, you are a caregiver. Here are options for you of places to go and places to ask for help; some of them are online, some of them are support groups in town, […] or an agency that’s able to link you up with all of these things.” And if a physician can help you recognize yourself as being a caregiver, because so many times you’re a daughter or a wife or a husband or a whatever, and you forget that link that you can be a caregiving daughter, or a caregiving wife. And sometimes it takes a physician to say those words. So yeah, I would love physicians and medical office assistants to have a package like that; to have posters in their office about “Are you a family caregiver?” “Do you give care to a neighbour, a relative, a friend who is frail, has a disability? Are you taking them meals, are you doing their banking? Then you are a caregiver and here’s a list of organizations that you can contact to help you out with that.” That’s probably one of the biggest things.

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Generally I’ve had respect from the doctors that I deal with, but I think I earn it. With all dad’s hospital visits, I would be there in emergency, sitting beside his bed with my recipe cards of every medication he took, every visit he went to the hospital, every diagnosis he had. I made myself available as his caregiver and made doctors’ jobs easier. And it’s one of the things that I would love doctors to know and to recognize is that in this caregiving circle of which they are a part—as are their nurses, as are hospitals, as are all of those things—there’s also the family caregiver in that circle. And if that link breaks, if that family caregiver drops off the circle or the chain of caregiving surrounding their patient, it’s like a whole domino effect where suddenly you’re missing this huge chunk of caregiving for your patient. And so, the more they can do to support that family caregiver in that circle of care, the better they are, the better their patient is. Like, we are an important link. And I made myself that. And so… I guess I’m just pushy.

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In 1990, I was diagnosed with Multiple Sclerosis and was completely devastated. I felt it had ruined my life and stolen my life from me and [I] was very disabled for a year with grief and with the exacerbation that I was having. 

In 1991, I was coming out the other side of that and my father—my mom and dad lived on the same piece of property as my husband and I, and my father had a seizure behind the wheel of the car and was hospitalized and was found to have chronic obstructive pulmonary disease, seizure disorder, congestive heart failure, and over the years he started having the mini-strokes. One week later, my mother was taken to the eye doctor and discovered that she was going blind—and fairly quickly with macular degeneration. So she could no longer drive. So I was of the only one of the 3 of us that was driving. 

A year later my husband was diagnosed with rheumatoid arthritis, which didn’t seem that huge a crisis at the time. But, over the years he got more and more disabled with it. So, in about the mid-90’s, he was basically in bed. He did this little triangular thing. He would be in bed, walk to the chair, walk to the bathroom, go back to bed; walk to the chair, watch TV, go to the bathroom, go back to bed. And on really bad days he couldn’t get out of bed, and I would take him bottles and things so he could urinate in them when he couldn’t get up and watch TV and go to the bathroom. So it was very difficult seeing him in as much pain as he was. And he was on morphine, and it was almost like a traumatic brain injury; it was completely derailed him.

My father, at that time, was getting much sicker and was in the hospital, it seemed like, every long weekend. I’d get a desperate phone call from my mom: “Oh, your dad’s not breathing,” or “Your dad can’t get his breath.” And so, at 2 in the morning, I’d go over there and try and calm his breathing down and call an ambulance. And he’d be in the hospital for a week or so, and then he’d come back home again. And the next long weekend came along, he’d be off again. 

So by 1997, my husband was still pretty much restricted to bed, mom was really quite blind, and dad was in the hospital. In the first 9 months of that year, [dad] was hospitalized 10 times. So, it was like an ongoing nightmare. And at the end of September 1997, he died.  A week later an uncle of mine, my mom’s brother, showed up at our house. Now this was a 20-mile walk from where he lived, and he had walked there. It became obvious to us that he was well in the grips of dementia. And his wife was already in long-term care, so he and they had no children, so he became, sort of, my next distraction from everything I was doing. He only lived probably a year after that. Dementia just totally ruined him. Then I had an aunt—my mom’s sister. [She] also showed up with signs of dementia and she only had one daughter and she lived in London, England. So it became almost a family joke that “Oh well, at least I’m out of relatives.”

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Probably my last piece of advice for caregivers would be to keep your sense of humour—to not be afraid to laugh and enjoy life. And, not to pay attention of people who think that it’s cruel to laugh at somebody who does something weird because of a medical condition. I mean, if you’re sitting there with an aunt who loves eating chicken wings and she eats all the chicken off her chicken wings, and then takes the bones and stuffs them into the vase in the middle of the table: go with it. Laugh with it. Have fun with it. Yes it’s, at some level sad and tragic, but if you can’t do that, if everything that happens becomes gloom and horrible and frightening, then your body is going to respond that way. And if sometimes you can just sit down and have a good belly laugh—I think they call it black humour when you’re laughing at something that isn’t sort of genuinely funny. But if you don’t do that, you’ll just die within your caregiving experience.

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The parts that I found more difficult to negotiate with were things like the constant layer of worry in my brain that I didn’t know was there. It just was, and it was constantly eating away and interrupting sleep, and all of the “what ifs”. And it was just like, I sort of pictured it as this red layer of gelatine just sort of working a way in there, and interrupting things that I wanted to do, and just adding a layer.

And the fear of that, because she was my one remaining relative at that point. But she got a bladder infection that moved into pneumonia, and, like, out of the blue was dead within 10 days. So all of the times that I had spent, “Oh my gosh, what am I going to do when she doesn’t know me?” “How am I going to deal with moving her from where she lives into more of a care facility?” All of those types of things, all of those hours I had spent worrying and fussing where I had this little layer in my brain that was just always aware these were decisions I was going to have to make, ends up being a complete waste of time and energy because her life ended as she would have wanted it.

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I remember when my dad was diagnosed—and I sort of knew he was having seizures because he had had a couple of small accidents where he had seemed very confused, and I didn’t know anything about a seizure disorder that wouldn’t show up on a brain scan, that wasn’t like epilepsy and obvious. And I remember the doctor, and he diagnosed dad with a number of things—congestive heart failure, and so on—but he was okay to drive. And I’m “But he’s having the seizures,” and I remember him turning, like spinning on his heel, looking at me and saying, “Why don’t you go away and leave the man alone!” And I went, “Oh, okay.” And about a week later he had that major seizure behind the wheel of a car that just about killed him and my mother. And I had that type of thing happen to me on occasion. Generally, I’ve had respect from the doctors that I deal with, but I think I earn it.

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The dealing with negotiating with the healthcare system, navigating the healthcare system, was always a something going on. Just before my dad died, he was in the hospital and he was in very bad shape—on oxygen and really not breathing well—and the hospital, I guess, was very short of beds and really needed to empty out as many beds as they could, and so, wanted to send him home. Well, we lived an hour away from the hospital out on a country road. I’m like, “are you mad?” My mom’s blind, I’ve got MS, and I didn’t know who to talk to. I would talk to the nurses, and the nurses would agree with me; he should not be sent anywhere.

But ultimately, they sent him home and he lasted maybe 4 hours before an ambulance was called to take him back to the hospital. And when he got back, within days, [he] slipped into unconsciousness and died a week after that. I didn’t know who to go to to stop this from happening. I knew it was going to be a disaster. He had huge bed sores on him that needed to be treated and the whole situation was ludicrous. But, there was a level of nursing and social work in the hospital that I didn’t know about. I found that kind of thing very frustrating, that nobody, no nurse, no doctor, no social worker, mentioned this magic level— being the person who made that kind of decision to send him home—because I could have talked them out of that. I just could have; I got very good at that. That type of thing I found very frustrating.

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In almost all the cases that I’ve done caregiving, and it’s been a fair number of them by this time, there has been an incredible amount of joy. There has been an ability to recognize when a life is done: that sometimes when you are only seeing somebody once a week and you’re not as involved in their life and you’re not dealing with all the little crises that happen from day to day, somebody’s death can come as a real surprise, and really knock you back. Whereas when you’re a caregiver, you see the slow breakdowns of the body reaching its final time, and it makes the death of the person you’re caregiving much more a natural process, rather than being a complete shock.

And after the death, the feeling that you were there for them, you did the best you could do. There’s always going to be regrets in there; you always think “Oh geez, I should have done that,” or “Gee I wish I had noticed that earlier,” or there’s always stuff. But, I think if you hold onto the joy of what you were able to share with that person through their life and through their death is, I think, a huge bonus in your life.

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The thing I found most helpful has been support groups, and classes, and courses in all kinds of things; in grieving, in anger, in dealing with somebody with dementia, and what to expect when you’re going to put somebody into a care facility, what you’re going to go through, what grieving you’re going to go through, but where your best decisions are, and the warnings about what kind of emotions you’re going to feel so you’re not blindsided by suddenly being hit with huge amounts of guilt. It’s so much better when somebody says, “You are going to feel guilty. But you will learn to accept that. Now you’ve turned over the care. Now you can be a daughter or a wife and somebody else can do the care.” Whereas when you’re so tied up in the care, you’re no longer being the very necessary daughter or wife that people need to surround themselves with.

How did you find out about those sources? How did you go about looking for help and support or information?

Well, I heard about Family Caregivers Network fairly early in the caregiving. And I believe it was through a social worker or a doctor. Somebody mentioned it to me, and so I started getting involved with them then and taking courses. And I remember my amazement at the first course I took. [It] was on Coping with Grief and Anger, or identifying what’s grief and what’s anger and some, course like that. And I wasn’t a big person on self-help and courses and stuff, and a lot of people aren’t; people don’t find it easy to ask for help. But that was the first one I took and I was amazed at what it did for me. And so, I just stayed involved in Family Caregivers Network from then on.

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I was considerably more alone in the caregiving for your spouse situation because friends that the two of you had simply avoid you—as if they weren’t already because I had MS. So, friends vanish. They really do. They don’t know what to say. They don’t know how to deal with these new people. So you’re much more alone to begin with. Friends don’t want to hear about it, they really don’t. If you’re talking about your kids, they’ll listen for hours; if you talking about a sick husband on morphine, they don’t want to hear about it. It’s too real. That could happen to them. It’s scary and it’s…there’s very, very few support groups for people caring for an ill spouse. 

There’s… you can’t talk to your children or stepchildren because it’s about their dad and your personal and physical relationship with their father— that isn’t something you talk about. It’s different with your parent. If you’re changing your parent’s diaper, it’s an expected thing because of all the jokes about how you’re born with peeing and you needing a diaper, and then you get old and you need a diaper. There’s all that standard stuff. How much do you see about one spouse or both spouses being unwell? […] There just isn’t a lot of conversation about this. But it happens. And there’s more conversation about if your spouse gets dementia than there is if your spouse gets physically ill. There’s just not a lot of conversation about it. 
There’s this… If you’re talking about being really angry at your spouse because he’s got arthritis or heart problems or he’s whatever, you’re not being a good spouse. You’re just not. You’re there in sickness and in health. Suck it up. Just do it. And yeah, it leaves you very, very isolated with all of your feelings about caregiving a spouse.

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I simply believe in the value of caregiving. I think that the experience of caregiving broadens people’s minds and their life’s experience. I mean, I can talk to people and I know they have never been there. They haven’t done that, because they live life at a slightly untouched level, whereas caregivers of adults have a different level of awareness, of what happens in life and death. Somehow […] you look at people at a different level once you’ve been a caregiver