“Then who pays?” I remember asking. The doctor on duty, seemingly indignant, said, “Your father pays.” This was my first brush with Medicare. I thought it took care of everything, but not this. Not the kind of help my dad needed, not ‘round the clock care for normal daily functioning.

Overnight, a hospital bed replaced the dining room table, a ramp was being designed for the front entry, and a wheelchair bumped my dad’s favorite chair out of the living room. Mom would take care of him. She insisted.   She meant it when she had said ’…or worse.’

Weeks went by. There had been sparse visits from a home health aide and social worker. My brother and sister and I would regularly stop by, and offered to move in for a time, but even with our help and an angel of a registered nurse living right next door, mom didn’t sleep, her anxiety level increased, and her energy slipped away.

When dad had a second stroke, his doctor took mom aside and said it was best for him to go to a nursing home, at least for a while. It came at a time when she had little resistance, and I think she was actually relieved (I know I was) because those weeks at home had been more trying and exhausting than any of us ever would have imagined.

We were fortunate to find a Medicare-approved nursing home only minutes from my parents’ home. My dad was a retired firefighter, he had a modest pension and some savings, but it wasn’t long before these expensive care costs had us looking into Medical Assistance.

Mom showed up first thing every morning and would stay most of the day. We learned quickly that although the staff was wonderful, they were always short on time. She wanted to make sure he had clean clothes, the therapy he needed, help with his meals, and fresh air on the patio. Now at the end of each day, mom had more time to rest and take care of herself, too.

Dad spent his last 3 years in that nursing home. He did get compassionate care, but getting government help came with a price – sharing his room with a stranger, lack of privacy, living apart from my mom, and services limited by a bureaucracy that took away his independence and gave him no option to return home again.

I often think about how different those years could have been if my dad would have had long term care insurance. Now admittedly, this was a time when long term care insurance was in its infancy, I don’t think my parents had even heard about it.

But if dad had had a plan in place, he could have had care on his own terms in his home of over 50 years, the home that before him had belonged to his parents. A care coordinator would have helped us research care services and arranged for daily care by professionals that would not only have given mom some relief but the confidence that things were going okay.

Dad would not have had to share his room with a stranger. He could have had home cooked meals, been surrounded by his things, maybe even sleep in his own bed. He could have been near his neighbors, watched his grandkids play in his yard and celebrated birthdays.

If dad had had a plan in place, he would not have had to spend down his savings before qualifying for Medical Assistance only to be held hostage by the always-changing Medicaid rules that limited his care options but above all, trampled on his dignity. And maybe just as important, he could have had the pride in knowing he had paid his own way.

My Mom

My mom was ahead of her time. She always had a preventative approach to health and wellness that included smart eating and plenty of exercise. “A Depression kid never forgets what it’s like to go hungry”, she would say, and she tackled her weekly grocery shopping with gratitude.

Mom baked her own whole wheat bread, chose fish and chicken over beef, and ate plenty of fresh fruits and vegetables. She walked miles a day well past the age of 80, had no aches and pains, had a great circle of friends, read profusely, sang in the church choir, and was actively involved with her family. She did everything right.

Several years after my dad passed away, however, mom began showing some troubling signs. She might head out for a walk and not dress for the weather, and I noticed once that she had difficulty writing her name on a check. For a while, we would chalk this up to getting older, after all, mom was over 80 now. We didn’t want to see it, we didn’t want to deal with it, we didn’t want to admit we were losing her.

When we suggested she live with one of us, or that an apartment or assisted living may make more sense than her two story colonial, mom scoffed at the idea. She was adamant about staying in her own home. It soon became clear that we would have to force the issue, yet we had no legal means that would allow us to take control, and I feared her resistance once we did. And to complicate things, it was difficult for my siblings and me to agree on a course of action.

I decided to get my mom’s doctor involved, and then contacted the director of a neighborhood assisted living facility to arrange for a visit. The director was very accommodating and compassionate as she listened intently to our plight. With her help, and at the urging of mom’s doctor, a tour of the facility resulted in a signature and a down payment, and a promise that she would at least ‘give it a try’. She could move in the following week.

I dreaded moving day. We had already put this off way too long, but I didn’t know how she would react once we swung into action. And we had no backup plan.

I had planned a trip to mom’s hairdresser and then lunch while my brother and husband brought some things from her house to set up her room – a bed, her vanity, a comfortable chair, a few small side tables and lamps, some clothes, a collection of family photos.

When mom and I arrived, the room was all ready, her things made it familiar, and it looked like ‘her’. Somewhat taken aback at first, she broke into a smile and slowly settled in.

For months following, mom not only seemed to enjoy her new surroundings, she thrived. There was always someone to talk to, attentive staff, community meals, and plenty of music and activities, all of which had a positive effect on her. She had been so insistent about staying in her own home that it never occurred to me that she would actually like facility living. I never saw that coming.

But within a year, mom needed more attention than the assisted living could provide, so as rules required, she had to transfer to a nursing home, the same home where my father had stayed.

Mom gradually withdrew into her own world, and eventually showed little recognition of any of us, then communication stopped altogether. In all, she spent over 10 years in these facilities. As much as her illness was scary, confusing, and vexing for her, it was so tough on everyone who had loved and known her as this vital and spirited person.

My mom was convinced that by following the rules and taking good care of herself, she would never need the kind of care dad had needed. But even when we do everything right, stuff happens, Alzheimer’s can happen.

The experiences of my parents were challenging and painful, yet I learned so much that I knew I somehow wanted to pass on to others. When long term care planning became a talking point for financial advisors and estate planning attorneys, I decided to dedicate my professional life to educating and helping people understand the value that a written plan for care could have for themselves and their families.

Morrie and his wife had always been careful about money. They had lived modestly and within their means, they were proud of their paid-up mortgage and savings. Now a widower, Morrie remained in his rural home and continued to enjoy simple living – chopping wood for his woodstove, hunting and fishing. He loved his life. As long as his pickup was running and his dog was by his side, he was happy.

Several years ago, Morrie dropped by our office for a visit. His gait was a little slower, but he still had a smile and a great attitude…..and he was collecting benefits from his long term care insurance policy.

“I need help in the morning to get going, but after that, I can go about my day. I can even still drive, and walk in here to visit you,” Morrie boasted.

Morrie needed a home health aide to come into his home each day to help him get showered, dressed, and properly fed. Then he could do most things he enjoyed, including driving his trusted old pickup truck.

“Without the long term care insurance, I would be in a nursing home or gone by now. I think I would have given up”, Morrie had said.   He knew he would have waited too long to get help if he had had to use his own money for his care, and he might have jeopardized his health to the point of being forced to go to a nursing home.

Though Morrie needed care for several more years as he became more frail, his long term care insurance paid for the services he needed that helped him maintain a good level of independence, and he was confident his savings and real estate would go to his sons, not his care. That was real peace of mind for him.

Yet the pain didn’t let go, not even through physical therapy, chiropractic treatments, and help from an exercise physiologist.John and Melanie traded their lake condo for a house in town, all on one level, complete with handicap accessibility. But a cane soon gave way to a walker, and eventually showering and navigating the house became a challenge. Falling was a concern. That’s when Melanie called me to help file John’s long term care insurance claim.John wanted to get care at home. Initially, he had a home health aide come by a day or two a week, then three days. These sessions help Melanie help John. They also give her a chance to take a break, run errands, go to church, and meet friends. Having help come to the house allows Melanie to work at a job she loves one morning a week, and more time to work from home.

Getting care at home allows John to stay connected with family and friends. His grandsons squeal when he gives them rides on his motorized chair, and they bond through their silliness. Even though he’s not as independent as he would like to be, he can still enjoy the sound of their laughter, and a home cooked meal tastes just as good as it ever did.

When physical demands of caregiving started affecting Melanie’s back, her friend Debbie, a physician, suggested scheduling more time with the home health aide. She warned against burnout, and she said that research has shown that the more little breaks for the caregiver, the longer they will be able to keep up with the pressures caregiving brings. “You listen to me, use the insurance”, Debbie said, “push it out as far as you can!”

At the rate John is using his insurance, there should be enough benefit for whatever he needs. Their income and savings are for other purposes…it’s for their lifestyle, and maybe even college for those grandsons.

Melanie said that she would not take time for herself, and they would not likely have help come in if they didn’t have long term care insurance. It helps make a difficult lifestyle change more manageable.   It helps protect Melanie’s health; she can better pace herself for this long term care event that started years ago. And it gives her the freedom to plan visits with her daughter and family out of state, a time when home health aides can take over 24/7.

John says, “Being the proud curmudgeon I am, I’m NEVER happy about spending money…especially on insurance. That said, learning about all the ins and outs of long term care insurance… and going through the application process…was one of the best decisions I’ve ever made. Having this insurance in place gave me great peace of mind. Having it there now that I need it has been a godsend.”