Evolution of a Caregiver

By Pamela Atwood, MA, CDP, CLL, Director of Dementia Care Services

(This is a fictional, but all-too-real story.)

Before families reach out for assistance, they have usually exhausted themselves emotionally, physically and financially. Most families don’t realize that what they pay for out of pocket might be covered by insurance, community-based programs, or could be tax-deductible. This story might sound so familiar that you may think I’ve peered into your home. Nope – my family lived it, as have so many others.  Question is – will you do something to help yourself? Read on and learn what you can do.

Karen is VP of a large bank in NYC. She is 62 years old. She is the caregiver for her father who is 97 and has dementia.  She has been caring for him for the past three years. He used to be a successful accountant. She noticed he was having problems paying his bills on time and paying his taxes, balancing the check book, etc. At first she blamed depression after mom died. Then she blamed the post office. Then she blamed changes in his vision. Three years ago he got lost in the city trying to find his doctor. He now requires a wheel chair for distance and is not safe living alone.

  •  Karen has borrowed against her 401K retirement plan to help pay for dad’s care. 
  • She has sold her house on Staten Island and moved into an apartment large enough for her, dad and a live-in aide if they ever need one.
  • She pays $1600 more per month than what a 1-bedroom apartment in the same building would cost.
  • Dad’s retirement/social security covers the balance of the rent and his supplemental insurance premium.
  • Karen pays out of pocket for most medications (the Medicare Part D Plan is known for many “holes” in coverage).
  • She pays approximately $1,000 per month in incontinence supplies.
  • She pays more than $1,600 per month for day care to give dad a safe, structured place for him to go while she’s at work. The day care is open from 9a-3p.
  • She pays nearly $20 an hour for a companion to stay with her dad until she gets home from work after 6pm.
  • She pays $330/trip for a wheel-chair van for monthly doctor appointments (sometimes more than once a month).
  • She pays $40 for a grab bar to be installed in the shower.  She pays out of pocket for a shower bench to make it easier for her to help him with hygiene.

“You don’t realize what you’re paying for or what someone else should pay for. You just pick up things as you need. It’s overwhelming. You just continue to survive,” says Karen. When she went to the doctor’s office recently, her nurse practitioner asked if she was stressed as a caregiver. “I never knew I was one. I’m a daughter, and I help dad, but I don’t remember at what point I became his caregiver. It was surreal – I’ve got caregiver stress?”

Every one of the underlined statements/words in the introduction, and each of the bullets are linked to possible help – either pieces that should have been paid for by Medicare, or which may be covered by a community service or tax deduction. Your answers are available at www.agingcareacademy.org . On Monday, October 14 at 6:30pm we will host a free community seminar which will address many of these issues – can’t attend? We’ll be tweeting live from the event. See the website for details. Our Aging Care Academy courses answer these questions, and more. An individualized consultation will prepare you in every way for the comprehensive issues that caregivers and their loved ones face.  Email us or chat online with us at www.agingcareacademy.org.

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