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My Story Part 1

My Story Part 1

I can try, but I really can’t imagine what it would be like to give up most of my independence if/when I get to that point in my life. The story I’m going to tell you is about the loss of independence and the major risks and hurdles our family faced when we realized our aging parents were no longer safe, nor had quality of life, in their respective homes. This is a true story that started over 3 years ago and it’s a story that continues to play out to this day. It’s the story about how my sister and I came up with a plan, carried it out, and were able to successfully move our aging parents, now 93 and 95 years old, from their home of 67 years where there were no family relatives less than 2500 miles away, to their new home in Orange County, California. But, believe me, this does not imply that this was an easy journey by any means. Therein lies the reason for bringing our journey to you so that you and your family will start to understand how to move forward with a plan to provide a better quality of life for your loved one or family member, when the time comes in the future. And that you will be able to learn from the pitfalls, false starts, and roadblocks we faced along the way. You will also come to understand how to mobilize each and every resource necessary to help you and your family through the process, and to get you to your desired goal.

Up until my dad’s emergency surgery in early January 2015, my parents lived together in a high-rise condo in a major metropolitan city. At the age of 92, he underwent major abdominal surgery for a ruptured diverticula, and subsequent repair of 2 fistulas to the bladder, and a permanent colostomy. Yes, he survived, but because of the associated serious blood infection, along with the surgical insult, and the effects of general anesthesia on a 92 yo brain, his mind was not quite the same. But 6 months later after 4 months of rehabilitation in a skilled nursing facility, he was able to feed himself, carry on a meaningful conversation, as well as take a few steps with a walker with hands-on assistance. It was miraculous; he surely was “tough as nails”.

But was he ready to go home? Was our 90 yo mom ready to take on a full-time caregiver role?

Unfortunately, our mom had her own health issues: Severe curvature of the spine, severe arthritic deformities of her toes in both feet, as well as deteriorating eyesight from macular degeneration in both eyes. Regardless, she was still driving her own car, going to MD appointments, errands, food shopping and maintaining a 2-bedroom apartment. Bringing dad home would have required 24/7 in home care because he was dependent on someone else for 5 out of 6 activities of daily living (ADLs): Bathing, dressing, grooming, transfers, toileting, and incontinence care. He could still feed himself. But at the same time, the post-surgical vascular dementia created judgement lapses, confusion and forgetfulness. He would forget to press the call light, try to get out of bed by himself, and then end up on the floor.

Would the burden of bringing dad home be too great for our mom? Would they be able to afford to pay for 24/7 care indefinitely at home?

Before I answer these questions, its important to know that our parents were always staunchly independent and self-sufficient. Our dad had worked as a physician up until he was almost 90 years old. Both of them were from small midwestern towns growing up in the late 1920’s, coming of age in the early 1940’s. They fully expected to live out their lives where they raised 2 daughters, had a thriving medical practice, and established a strong social network of friends and neighbors over 60 years. But above all they never seriously considered or developed nor spoke about an “end of life plan”. It was as if they would “live forever”.

My Story Part 2

My Story Part 2

Fortunately, we were able to postpone any hardnosed decisions about moving dad for the first 4 months. His Medicare and the Medicare Supplemental insurance covered 100% of the Skilled Nursing/Rehabilitation expenses for almost 100 days. As long as he was slowly improving with Physical and Occupational therapy, his insurance would continue to pay. But once his progress plateaued or he reached the 100-day maximum for Medicare coverage, private pay would have to start picking up the tab. And it would be a fairly large tab, to the tune of $350/day plus supplies and therapy charges as needed. My sister and I stayed informed about our dad’s progress by participating in regularly scheduled “case conferences” with his “care team” (Social Worker, RN, Physical Therapist, Occupational Therapist, and Assistant Administrator) by long-distance conference calls. We also made long distance (2500 miles one way) trips to alternately visit our parents at least every 3 months.

During the time when we were “on the ground” with our mom, visiting our dad every day, it became clear that she was not ready, nor would she ever be ready, to take care of our dad at home again. In our mom’s words, “it would be too depressing to have Dad home”, and “it would bring me down too”. When Medicare finally denied further coverage, Dad was still a 2-person hands-on assist for all transfers. He could barely bear weight, nor could he bathe, toilet, groom or dress himself without full hands-on assistance. Home care quickly became a non-option both financially (at over $750+/day with 24/7 care or two 12-hr shifts) and logistically (2 person assist).

And so, dad stayed on at the same facility. He was moved from an inside double-room on the 3rd floor “Medicare” wing to a room with a large picture window on the 2nd floor sub-acute/dementia care wing. And our mom started paying 100% “out of pocket” for all his expenses. He had a call-bell for help when he remembered. He also shared the same nursing aide with 10-12+ other residents during the day shift and 20+ other residents during the night shift. His room had a linoleum floor and contained an electric hospital bed, overhead 16” TV, a 2-drawer bedside table, a 6-drawer chest of drawers, 1 chair, and a 36” wide wooden closet. The double-room shared a large wheelchair accessible shower/toilet with another resident. The 10’ X 15’ “living space” was separated by a floor-to-ceiling curtain. Some would call his new home “minimalist”, but we considered it small, stark and sterile. We had all entered a new phase of living with chronic long-term disability.

Question: How do we define quality of life and how do we get there?