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Does it seem like I post a lot of articles about caregivers when I should post more about stroke survivors? Maybe I do. At least I don't think so. I think caregivers do not normally get the recognition that they deserve. The focus is usually on the survivor, and rightly so. Bless their hearts. Survivors lives are so radically changed and so misunderstood in their actions. Their lives are so disrupted, made so much more difficult.
In danger of downplaying the difficulties of the survivor, I want to focus more this week on the difficulties of the caregiver. After all, they are really the unsung heros of a nasty, life changing, too frequent occurring disability called stroke.
The following post is a re-post from August 2014 by Deb Theriault. She is a member of the now discontinued Strokenet newsletter staff.
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Unsung Heroes
by Deb TheriaultBack in the 1990’s, I had to do many everyday things for my father, who had developed Parkinson’s disease. I handled all of his paperwork and financial affairs, made sure he went to the doctors and took his medications, was with him whenever he was hospitalized and, ultimately, had to find him a suitable assisted living facility. Once he was there, I then had to communicate with the facility people to make sure that his needs were met.
However, I didn’t consider myself a “real” caregiver since I didn’t have to handle my father’s more physically intimate needs. I remember attending a local Parkinson’s support group with an acquaintance whose father also had Parkinson’s. Unlike my friend, I didn’t have to prepare food for my father or feed him, help him with bathing or assist him with his toileting functions, so when the support group had a “caregiver’s recognition day,” I felt like a fraud when I received one of the white carnations that were handed out to the caregivers in attendance. I knew I was devoting a lot of time and energy looking after my father’s many needs, but I didn’t feel like I was in the same “caregiving league” as my friend.
Likewise, over the years I’ve received a lot of correspondence from spouses, partners and family members of stroke survivors who feel the same way. Many people who are in the survivor’s orbit often say things like:
“I’m not their actual caregiver, but I help them out a lot by reminding them to take their pills, going with them to the doctors, and doing errands and household chores that they can’t do anymore.”
OR
“I don’t have to give them baths, get them dressed or brush their teeth, but I’ve taken over buying food and meal preparation, because their attention span is off just enough that I fear for their safety going out alone, or when working around a hot stove.”
“I don’t have to give them baths, get them dressed or brush their teeth, but I’ve taken over buying food and meal preparation, because their attention span is off just enough that I fear for their safety going out alone, or when working around a hot stove.”
OR
“I now do all the finances, bill paying and other administrative chores, as well as keep track of all their appointments and medications, because he/she doesn’t have the concentration or focus that they used to.”
Some people may argue that the above duties actually do describe those of a caregiver. But others would point out that while these activities are a part of the stroke survivor’s total world, they don’t include hands-on activities such as personal hygiene, toileting, and feeding. If they don’t perform these types of duties, many spouses, partners, family members and friends of stroke survivors feel that they’re not “real” caregivers.
But, if these thoughtful, giving people aren’t caregivers, then what are they? Maybe it’s time to think of these individuals in a different light, and to “re-brand” their role as that of a “care partner,” someone who is deeply invested in the well-being of the stroke survivor, but who performs the less physically intimate tasks that keep the survivor’s life in order and enable them to live more normally.
This re-branding won’t be embraced by everyone, but a care partner designation helps to clarify the care partner’s role. It acknowledges that care partners direct and coordinate many aspects of their loved one’s day-to-day activities and care, even if it doesn’t involve feeding, bathing and similar functions. This designation also recognizes that care partnering is just as important as traditional caregiving, and that care partners are just as essential as caregivers, even if their associated tasks are sometimes different.
It should be noted that the caregiver and care partner roles often overlap and aren’t necessarily “static.” They can swing back and forth, as the stroke survivor makes progress but then experiences setbacks. However, as the stroke survivor once again becomes more adept and independent, his/her caregiver can transition back into the role of care partner in the survivor’s life.
Care partnering can also take place at a distance, as in the case of adult children who coordinate the care of parents who live across the country from them. It’s not truly accurate to describe these individuals as caregivers (since they’re not in close physical proximity to the people they’re caring for), but it’s easy to think of them as care partners since they’re still intensely involved in coordinating, and making decisions about, their parents’ daily care.
Most people learn how to be care partners “on the job,” but there’s a lot of information on the internet that can help care partners, and caregivers, to do their jobs better. Much of this info can be found on disease-specific websites, which provide advice to caregivers of people who have those associated illnesses or problems. For example, the Stroke Network has a wonderful caregiver’s forum for people who take care of stroke survivors.
But, there’s at least one resource out there that isn’t associated with any one illness or condition. The “Care Partners Resource” has a good website that addresses both caregiving and care partnering. They can be found at: http://carepartnersresource.com/
Additional resources can be found by “Googling” words and phrases such as “care partner”, “care partnering”, “caregiving”, and like terms.
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“I now do all the finances, bill paying and other administrative chores, as well as keep track of all their appointments and medications, because he/she doesn’t have the concentration or focus that they used to.”
Some people may argue that the above duties actually do describe those of a caregiver. But others would point out that while these activities are a part of the stroke survivor’s total world, they don’t include hands-on activities such as personal hygiene, toileting, and feeding. If they don’t perform these types of duties, many spouses, partners, family members and friends of stroke survivors feel that they’re not “real” caregivers.
But, if these thoughtful, giving people aren’t caregivers, then what are they? Maybe it’s time to think of these individuals in a different light, and to “re-brand” their role as that of a “care partner,” someone who is deeply invested in the well-being of the stroke survivor, but who performs the less physically intimate tasks that keep the survivor’s life in order and enable them to live more normally.
This re-branding won’t be embraced by everyone, but a care partner designation helps to clarify the care partner’s role. It acknowledges that care partners direct and coordinate many aspects of their loved one’s day-to-day activities and care, even if it doesn’t involve feeding, bathing and similar functions. This designation also recognizes that care partnering is just as important as traditional caregiving, and that care partners are just as essential as caregivers, even if their associated tasks are sometimes different.
It should be noted that the caregiver and care partner roles often overlap and aren’t necessarily “static.” They can swing back and forth, as the stroke survivor makes progress but then experiences setbacks. However, as the stroke survivor once again becomes more adept and independent, his/her caregiver can transition back into the role of care partner in the survivor’s life.
Care partnering can also take place at a distance, as in the case of adult children who coordinate the care of parents who live across the country from them. It’s not truly accurate to describe these individuals as caregivers (since they’re not in close physical proximity to the people they’re caring for), but it’s easy to think of them as care partners since they’re still intensely involved in coordinating, and making decisions about, their parents’ daily care.
Most people learn how to be care partners “on the job,” but there’s a lot of information on the internet that can help care partners, and caregivers, to do their jobs better. Much of this info can be found on disease-specific websites, which provide advice to caregivers of people who have those associated illnesses or problems. For example, the Stroke Network has a wonderful caregiver’s forum for people who take care of stroke survivors.
But, there’s at least one resource out there that isn’t associated with any one illness or condition. The “Care Partners Resource” has a good website that addresses both caregiving and care partnering. They can be found at: http://carepartnersresource.com/
Additional resources can be found by “Googling” words and phrases such as “care partner”, “care partnering”, “caregiving”, and like terms.
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Copyright @August 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
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Care Partners Resource 
