Caregiver starter pack
We usually don’t get to choose when to become caregivers. A crisis hits and we are dropped into a maze populated by scary monsters, like family conflict or financial ruin, and no guides.
This happened to a friend of mine recently and, when her loved one’s situation stabilized, I sent her 3 things:
1. A copy of?A Beginner’s Guide to the End, by BJ Miller, MD and Shoshana Berger . I have loaned or gifted this book a dozen times since I got my copy.
2. Atlas of Care’s?CareMap, created by Rajiv Mehta , is a wonderful way to not only document all the helpers in your and your loved ones’ lives, but also to see if there are gaps to fill in advance of the next crisis.?
When I’ve created CareMaps with people, one byproduct is a list of doctors, vendors, lawyers, friends, neighbors, family members, etc. The next step is to tell key people that they are on someone’s CareMap and share your contact information with them. Getting all those phone numbers in one place was MASSIVELY helpful when my loved one went over the cancer waterfall. His next-door neighbor called my mom, she called me, and I had all the numbers I needed to trigger the help we needed.
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3.?Engage with Grace?– five questions about the end of life. As I wrote to my friend, “They are conversation starters and may lead to you find out, for example, that she has a health care proxy — or has NOT yet filled it out and you can ask that you be the designated person.”
Later, I’ll share:
The ARCHANGELS ?Caregiver Intensity Index, a tool for checking in on yourself, to see if you are “in the red” and should reach out for help.?
On my blog, ??Maneesh Juneja recommended "that new caregivers should constantly remind themselves to make time for self care and self compassion, every day." His comment reminded me that the other “item” I packed in my friend’s starter kit is a friendly, experienced peer caregiver that she can call anytime for advice (me).?
What would you add? Please share in the comments below.
Sr. Graphic Designer / Clinical Trial Participant. Leveraging both to simplify complex research concepts to make clinical trials more accessible and patient-friendly for all.
1 年When my 96 year old mother fell and broke her neck in early 2020, my slow and steady caregiver experience accelerated as quickly as the dementia brought on by her fall. I’d already been a caregiver for over a decade but nothing prepared me for those last six months of mom’s life. Things I learned along the way: ? It’s ok to cry ? It’s also ok to laugh ? Take things as they come ? Meet your loved one where they are (I lived in mom’s make believe world where I was her roommate and my sister was our nurse. She was comfortable there and correcting her would have just confused and alarmed her) ? be present in the moment and don’t worry about what’s next for now. You might miss a memory being made ? find a support group. There are several great Facebook groups full of people who need you as much as you need them and they are full of kindness, shared experiences, and sage advice. ? Get help with chores and errands. If anyone offers, take them up on it. If they don’t offer, ask. Many times people pull away because they don’t know how to help. It’s awkward. ? get professional help. I signed upfor therapy during that time and got a lot out of it There’s so much more…
Technical Founder and Healthcare Data Journalist at CareSet. Author of Hacking Healthcare.
1 年When I had the same thing happen 10 years ago, I wrote this article on the concept of an epatient. Lots of things have changed and I can no longer endorse the same technologies. But much of it is still relevant: https://radar.oreilly.com/2012/01/epatients-empowered-patients.html
Digital Health Entrepreneur, Board Member and Advisor; Professor of Social Entrepreneurship & Global Health, Emory University; Managing Director, Advancing Health Innovation in Africa (AHIA)
1 年Great guidance and resources. Thanks for posting.
Author and Speaker and Executive Board Member - Long Island TRIO
1 年During the wait for my first heart transplant, I thought it would be a good idea if we BOTH saw CSW's. I had to force my wife to go, a very stoic woman who does not like to ask for help. We found a husband and wife team near us and it proved to be beneficial. It was important to me to know that while she was busy taking care of me, I too, had to take care of her. It's vitally important that the caregivers are given care themselves.
Strategic Advisor | Consultant | Patient Advocate | Research & Evaluation Expert | Writer | Board Chair
1 年Not a tangible resource, per se, but I’d counsel her that this role does not define her singularly and forever-more. She is still a full, multidimensional person who should —without guilt and with self-compassion—let all dimensions of her being continue to coexist alongside her caregiver role.