by MaryAnne Sterling, EVP Caregiver Experience
I have been reflecting on my caregiving experience and the wisdom that came out of caring for multiple parents with dementia and other chronic health conditions. So much of what I learned was the result of constant crisis management and the desperation that comes with it. But I have taken a somewhat humorous approach to articulating some important lessons I learned along the way.
As my friend Denise Brown reflected in her Caregiving.com blog, “when you expect a child, the community (your family, friends, coworkers) rallies around you and your spouse,” when you become a caregiver for an elderly parent with dementia… the community runs for the hills, leaving you to be the super hero who does it all. Well, my super hero cape is at the dry-cleaners. For everyone who wants to know “what can I do to help a family caregiver”, here is a great list: https://www.caregiving.com/2018/11/nov-20-kiss-a-caregiver/
I don’t have an off button, but I have a fully functioning “fierce” button. I once staged a brief sit-in at my local hospital when they wanted to discharge my dad, who was temporarily paralyzed on one side of his body due to a TIA. He couldn’t walk. There was no way we could get him up the steps into our home. Ultimately, the hospital admitted him rather than see me on the six-o’clock news. Good choice. I have found that the fierce button comes in handy when advocating for those you care for and it helps when explaining to policy makers what needs to be fixed.
The healthcare system is hoping that Alzheimer’s disease magically disappears so they won’t have to deal with it. If they hold out long enough, a cure will eventually be developed, and they won’t even need training. Therefore, it’s important to surround yourself with those who best know how to navigate the caregiving journey: other family caregivers (there are lots of support groups on Facebook) and wonderful organizations like UsAgainstAlzheimer’s, the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the greater caregiving community at Caregiving.com and the Caregiver Action Network.
The healthcare system is hoping that Alzheimer’s disease magically disappears so they won’t have to deal with it. If they hold out long enough, a cure will eventually be developed, and they won’t even need training. Therefore, it’s important to surround yourself with those who best know how to navigate the caregiving journey: other family caregivers (there are lots of support groups on Facebook) and wonderful organizations like UsAgainstAlzheimer’s, the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the greater caregiving community at Caregiving.com and the Caregiver Action Network.
The healthcare system is hoping that Alzheimer’s disease magically disappears so they won’t have to deal with it. If they hold out long enough, a cure will eventually be developed, and they won’t even need training. Therefore, it’s important to surround yourself with those who best know how to navigate the caregiving journey: other family caregivers (there are lots of support groups on Facebook) and wonderful organizations like UsAgainstAlzheimer’s, the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the greater caregiving community at Caregiving.com and the Caregiver Action Network.
The healthcare system is hoping that Alzheimer’s disease magically disappears so they won’t have to deal with it. If they hold out long enough, a cure will eventually be developed, and they won’t even need training. Therefore, it’s important to surround yourself with those who best know how to navigate the caregiving journey: other family caregivers (there are lots of support groups on Facebook) and wonderful organizations like UsAgainstAlzheimer’s, the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the greater caregiving community at Caregiving.com and the Caregiver Action Network.
The healthcare system is hoping that Alzheimer’s disease magically disappears so they won’t have to deal with it. If they hold out long enough, a cure will eventually be developed, and they won’t even need training. Therefore, it’s important to surround yourself with those who best know how to navigate the caregiving journey: other family caregivers (there are lots of support groups on Facebook) and wonderful organizations like UsAgainstAlzheimer’s, the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the greater caregiving community at Caregiving.com and the Caregiver Action Network.
On the lighter side, bodily functions take center stage for caregivers. Life is all about poop. Have you pooped (or not)? How much did you poop? What was the consistency of the poop? What color is the poop? Can you control your poop? This one is self-explanatory. But I’ve often wondered how such an indignant topic could become a cornerstone of caregiving.
Finally, food is a battle that’s not worth fighting. In hindsight, I should have let my mom eat dessert first and not urged her to consume a healthy meal as a pre-requisite. Forget the vegetables. Once you make it to 80, you should be able to eat anything you want, whenever you want. These are the important life lessons that caregiving has taught me.