Without warning, my dad suffered a massive stroke years ago that left him without the ability to use his right side or walk, and he could no longer speak. My family was at once consumed by new medical jargon, emotion, and tough decisions.
After several weeks in the hospital, the doctor concluded that further improvement was unlikely, and according to Medicare rules, my dad would be discharged the following day. And, also according to the rules, Medicare would stop paying the bills.
“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 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.
At some point, it is important to have a tough and honest discussion with your advisors…..
- How would you handle a care event lasting 2, 3, 8, even 10 years or more?
- How would a care event affect your income, your investments? Would you need to invade the principal? Be honest.
- How would a care event affect the plans you have for your business, your retirement, your family, your charities?
- What role would your family play in your care?
- How would your care event affect the lifestyle of your spouse during your care or after your death?
- Do you understand the role Medicare and Medicaid play in long term care?
- How much would you be willing to pay out of pocket for your care?
- Would you need to sell real estate, investments, or stocks to pay for your care? Could you be certain that market conditions and potential tax consequences would make that a viable option?
- How much would you want insurance to pay?
- Is your health care directive up to date, and when is it time to consider a power of attorney?
As much as a written plan funded by insurance helps protect income, assets and your estate planning, I believe that how it protects your family is of equal value:
- It gives them a clear direction and permission to get help.
- When a funding source is identified, there will be less emphasis on the financing of the care and more on finding the right care that’s needed.
- There will be fewer tough decisions that could strain family harmony.
- It helps your family supervise rather than provide care so they can mitigate unrealistic expectations of caregiving.
- It allows them to live their lives, free of guilt, knowing that your plans are unfolding as you laid them out.
If there comes a day in which you can no longer speak, will you be ready?