Issue 6: A Care Plan for a Life Worth Living
Anne Llewellyn MS, BCPA, RN, CMGT-BC, CRRN, BCPA, FCM
Content Writer, Nurse Advocate, Blogger, Digital Journalist
Issue 6: In this issue, we learn how Health Advocates come into people's lives at the most opportune of times. Read how Florida Healthcare Advocate Maureen Rulison, BCPA and owner of Caregiver Support and Resources, LLC, used her skills and resources to help a family design A Care Plan for a Life Worth Living.
A Man & His Memories By Maureen Rulison
I met him when he was 57. We’ll call him “Don.” Several states away, his daughter was concerned her father wasn’t himself anymore. Forgetting work meetings. Getting lost driving home.
Alzheimer’s.
His daughter made the trip to discuss patient advocacy and life-care planning. Outwardly, he looked great. Fit and healthy, even. Don assured her he was “fine” and “this is unnecessary.” He indeed felt great – that day.
With a little coaxing, we launched our patient-advocacy relationship. It has given Don a life worth living and made sense of overwhelming realities.
‘Let’s Get To Know You Each Other'
It wasn’t so much a formal meeting as a friendly living room chat. Thankfully, Don’s financial and legal “house was in order.” We easily assumed control of those details – from paying for advancing levels of care to final arrangements to bequeathing assets – to alleviate that burden.
It turned personal. We learned a lot about Don’s care wishes. “I want people to treat me as a person,” he said, perhaps acknowledging for the first time that Alzheimer’s would bring an avalanche of false pity. He wanted to create a video for future care partners and to plan a “living memorial service while I’m still kicking.” He preferred a party to enjoy family and friends rather than a mournful funeral.
‘Tools for Living Your Best Life’
Don enjoyed golf and drinks with friends. He played his guitar in church. His little granddaughter, about 4, was the apple of his eye.
Our plan tapped many medical experts and other resources to ensure his symptoms were well-managed. He continued living with purpose and joy for years.
‘Taking Care of Those Who Take Care of Us’
In that first meeting, Don’s daughter offered to move to Florida as his Alzheimer’s worsened. “I don’t want to be a burden,” he said tearfully. “It’s no burden,” she assured, although she grew to welcome our plan's support.
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In-home assistants became necessary – first church friends dropping by for coffee, then assistance from a local respite-care agency. Don spelled out his desire to stay home as long as feasible. When it came time for a memory care facility, our detailed plan was ready to be executed without fear or uncertainty.
‘Final Stages Planning’
We’re here right now. Less than ten years later, Don is recognizable by looks alone. He’s almost entirely non-communicative, and he must now be fed. That’s a tell-tale sign that the hospice care we planned is right around the corner.
We advocated for everything he needs in the end. He spends time weekly with his pastor for spiritual counseling, although sitting and enjoying the sunshine is counseling enough. His daughter and granddaughter, now in high school, are present almost daily. They’re receiving grief counseling to make sense of loss.
We’re all preparing to say goodbye to Don. I’ll miss him. I’m pleased we were able to plan a life worth living – for everyone involved.
Bio: Maureen Rulison is a Board-certified Patient Advocate providing services to Elders?in Tampa Bay, Florida. Maureen prepares individuals and their care partner teams for aging by creating personalized Life Care Plans. She also coordinates resources that may be needed as a loved one enters home care, assisted living and nursing facilities, and end-of-life care. Maureen specializes in working with Persons Living with Dementia and is a Certified Dementia Professional. Maureen is a Certified Medicaid Planner who works with multiple Attorneys and certified VA planners.
To reach Maureen Rulison call her at 727-409-2292, visit her website at https://www.caregiversupportandresources.com ,?or email her at [email protected]
To learn more about Patient/Health Advocacy, check out the following resources:
Professional organizations you can use to find an independent patient/healthcare?advocate:
You can also search for healthcare advocates on these marketplace platforms:
To learn about the history of Patient/Health Advocacy, visit this link:?https://aphadvocates.org/assets/History-Trends-CSA-Schuler-12.21.pdf
To learn more about Healthcare Advocates of Florida Network (HAF): email the Communications Chair Janet Beesting?Nelson at?[email protected]
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