Hi, Dawn here, reaching out for assistance for mom's In-Home Care needs.....

The Short Story....

We are reaching out for assistance to help pay for my mom's future in-home care and equipment costs.

She currently has 2 amazing paid In-Home Caregivers we don't want to lose, plus myself (unpaid). I would like to hire a 3rd caregiver, but am unable to at this time due to the cost. We would also like to have a wall-mounted lift installed to reduce the strain of lifting and transferring her.

The Long Story....

In 2012, my mom was diagnosed with a rare (1 in 200,000) neuro-degenerative disease called Corticobasal Degeneration, a progressive upper motor neuron disease that has ultimately taken nearly all of her voluntary movement. It began in late 2011, with the loss of fine motor skill in her left hand and a knee that would occasionally give out. By 2012, she was walking with a cane and began losing her sense of balance, causing her to start having falls. As the disease slowing progressed through the years, she lost her ability to speak, chew, drink, blow her nose, cough, stand up, walk, write, feed herself, ultimately losing 95% of her ability to make purposeful movement. As her muscles were no longer being used, some have atrophied, while others have become rigid, contracted, and postured into awkward, uncomfortable positions. During the last 5 years, she has also suffered (and healed from) 4 fractures, a hip fracture in 2018, a sacral fracture in 2020, a leg fracture in 2021, and another (opposite) hip fracture in 2023. She still has some use of her right hand, allowing her to use her computer and communicate, plus she still has the ability to move her head, allowing her to further communicate. She can still swallow, but only specially pureed foods and thickened liquids that must be spoon fed. But throughout it all, she remains happy, determined, and cognitively fine, and all other body systems are completely healthy.

In mid-2013, she had to begin using In-Home Care to assist with all of her daily needs, and I became her medical and financial power-of-attorney, plus part-time caregiver. As the disease progressed, the amount and level of needed care increased, along with the need for more equipment, such as lift chair, chair cushions, rolling commode/shower chair, shower bench, hospital bed. We received very little guidance from healthcare professionals, as her disease is rare, progressive, and incurable. Only 2 neurologists of the 5 she saw had ever seen the disease before, and both indicated that there was no available treatment other than comfort care. So we continue to care for her in a way that keeps her as happy and comfortable as possible, adapting as her needs change.

But the cost of her care is prohibitive, averaging approximately $600-800 per week for paid caregivers, special equipment, food, etc., not including the normal household bills. She does receive a small amount of food and utility assistance, but no medical care assistance other than low cost prescriptions.

At the beginning of her disease and care, she had a long-term care insurance policy that reimbursed care expenses and equipment, but we reached the lifetime maximum of the policy in August of 2020. Since then, she has had to pay out-of-pocket, and we are nearing depletion of her available funds. She doesn't qualify for Medicaid because of her income and asset levels, won't qualify until all assets are depleted, including home and life insurance, and then would only qualify for state nursing home placement. She currently doesn't qualify for Area of Aging assistance because of her asset levels, would only qualify after surrender and spend-down of her life insurance, and the agencies she can choose from don't provide skilled care. Medicare only covers actual medical costs, such as Home Nurse, Occupational Therapy, and Physical Therapy, for periods of 4-6 weeks, as needed, with Doctor orders.

My brother and I are not able to cover the full costs of her care, but would like to keep her home, where she can receive the care she needs, from the caregivers she loves, from the caregivers who know and understand her needs.

So we are asking for your help, we need your help. Any donation we receive will make a huge impact on her quality of life .

As her daughter and power of attorney, I would receive and manage the funds, and can assure everyone that the funds would be used only for my moms in-home care needs.