John’s Story: So Much Red Tape

John’s caregiving journey began in 2016 when his father John Sr. was diagnosed with late-stage Alzheimer’s disease. This meant around the clock care and advocacy. Finding assistance was a trial in itself. John, a resident of Tuftonboro, left his job to care for his father and John’s sister was able to arrange the finances to make that a viable solution. It was not without its challenges both financially and emotionally.

For the next couple of years, John, now age 57, found himself living with and caring for his father around the clock. He was immediately responsible for paying his father’s medical expenses. This meant installing home modifications for easier living, paying for tier-3 copay medications, and purchasing other such necessary living accessories. He also was tasked with organizing doctor’s appointments, travel and transportation, cooking, and upkeep of the house. It was a lot, to say the least.

Fortunately, John’s sister knew of a durable medical equipment lending closet near her home in Massachusetts and he was able to do some of the home modification on his own. The lending closet was a huge asset during this time, but it still wasn’t enough.

John and his sister desperately tried to get their father approved for Medicaid to help with costs and aid. They faced many challenges and had to go through the courts just to make a stronger case.

“My sister and I had a very frustrating experience getting my father on Medicaid,” said John. “He was rejected several times for nonsensical reasons and we eventually had to hire an attorney to get through the red tape.”

Eventually John Sr. needed a level of care that his children could no longer provide at home. He was moved to a nursing home for the last five months of his life, still waiting on his Medicaid approval, which came a month after he passed away.

From the beginning it was a struggle to cobble together a system of care for John Sr. and his family was pretty much left on their own to figure it all out. Applying for Medicaid didn’t make it any easier.

“If they could streamline the process,” says John. “That would be the greatest thing.”

Looking back, John has some words of advice for family caregivers.

1. Be persistent—The important paperwork required for such as for Medicaid and the Department of Health of Human Services took several tries for it to be approved.

2. Choose providers carefully—It is important to have providers who have experience with dementia.

3. Plan ahead—John and his sister knew how to honor their father’s wishes because they had previously drawn up medical and financial powers of attorney.

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To many lawmakers, America’s millions of caregivers are invisible. Yet, our family caregivers hold up a broken long-term care system. Which is why AARP is looking for your help; we are starting a movement of family caregivers to show lawmakers that we are a powerful constituency who need support now.



Raise your hand and join the fight at www.aarp.org/iamacaregiver.



If you are a caregiver and need resources and support on your caregiving journey, please visit: www.aarp.org/cargiving.