My dad passed this past Saturday evening. I told the first person outside of my immediate family and circle this evening as it is a hard thing to talk about.
As I’ve talked about on some level on here, my dad was a chronic alcoholic. Even when I was a kid, I’m not sure a day of my life went by where his alcoholism didn’t touch my life in some way. Either in the form of his absence from being at the bar, to long stints of unemployment, circular arguments, neglect, and all of the trimmings that go along with alcoholism.
As he got older I found myself rescuing him from himself, pulling him out of living conditions that shocked every one of my human senses, and can not be adequately described by a written word.
I’ve had a first hand look at how mental illness and alcoholism age a person. What they do to the mind and body. How they wreak havoc on organs, living conditions, and social relationships. As I’ve gotten older and seen more of this from my family and through my work, I am more prepared to deal with trauma, but it still leaves me tired and empty.
Transitioning from emotions to practical issues, one thing that I was not completely prepared for was how insurance changes once you transition a person from treatment and rehab to palliative care and hospice.
What Medicare Covers
Generally speaking, as you age you qualify for Medicare. Medicare covers hospital stays, provides some level of prescription drug benefits, and will pay for a period of rehab in a skilled nursing facility after a qualifying hospital stay. The goal of Medicare is to provide insurance to allow a patient to get better and receive medical treatment to get better and maintain their health.
Once a decision to withdraw treatment is made and there is a switch to palliative care/comfort care, Medicare stops and private pay kicks back in. At the point this decision is made, therapies and rehabilitation are no longer the goal. The goal is comfort, to allow a person to complete their earthly journey pain free. The patient may eat and drink whatever they want. Blood pressure meds, antibiotics, and other medications are stopped. While some level of medical attention is provided, the primary focus is to make sure the person is pain free.
Yes, hospice is covered, but hospice is not skilled nursing. Hospice provides services yes, they are a wonderful resource and the folks who do this as a part of their day-to-day lives are angels. Hospice makes a lot of things easier from getting equipment, to paying for supplies, to preparing you for what to expect, but they don’t come with a crystal ball, and they certainly do not come with complete solutions.
Assisted Living Is Not Skilled Nursing
Up until the end of July Dad was in assisted living. He had level two nursing, but was able to ambulate with a walker and perform some level of his daily activities (feeding himself, getting dressed) in a mostly independent manner. The cost of his living and care was about $5,500 per month.
This is cheap. Both Mom and Dad are at an assisted living facility where they each had their own one bedroom apartment (they divorced in 1998) that included a small kitchenette, dining area, family room, and accessible bathroom. The facility is not new, but it is comfortable, and until the pandemic, the facility exceeded my expectations given the monthly costs. Most importantly, being the only family in town, the facility was a 10-15 minute commute from my house in Westerville.
When I had priced similar accommodations for my grandfather in 2012, I found facilities ranging in price from $7,500 per month to $10,500 per month. Grandpa required a slightly higher level of skilled care due to dementia, but still was more physically independent than both of my parents into his early nineties.
The Descent
The accumulation of medical problems came to a head for Dad in late July. He was taken to Saint Ann’s where for the next month he went through a series of set-backs and rallies where one day he would be on the ropes and the next he would be preparing for a discharge. In late August everything took a sharp turn when his respiratory system began failing him and he could no longer drink fluids without the fluids going to his lungs. In short, every time he consumed water, he was slowly drowning himself.
Dad stayed coherent and opted to continue medical treatment, which included having a direct port feeding tube, and being placed on a bi-pap that was set to a turbo mode (similar machine is used for sleep apnea). The bi-pap was necessary to try to get his oxygen levels up and CO2 levels down. This was one step short of being on a ventilator.
After taking this step the doctors allowed him a week to hopefully turn things around.
After a week the fight was gone
After about a week on the bi-pap, dad’s fight was gone. He hadn’t been able to eat or drink, instead all nutrition was being provided through IVs and a feeding port. Dad was bedridden, unable to get out of bed for anything. He had a few bright spots here and there, but was largely confused as his body and organs continued to shut down.
Meeting with hospice
The doctors arranged for us to meet with the palliative care team where they gave us the run down on what to expect. Given dad’s condition and his oxygen levels, I had assumed he would stay at Saint Ann’s. However, once a patient transitions from therapies and aimed at rehabilitation to palliative care, Medicare coverage ends and the hospital is tasked with finding an alternative place for the patient to go.
For someone in my dad’s position, the options were slim. The first suggestion was that he be sent home and we were told that hospice would be available for a few hours each day to help family as he faded away. This was not an option for us. Dad’s home was assisted living, but assisted living is not skilled nursing and they are not equipped to deal with a patient who is completely bedridden. So this was not an option.
As a family member, the instinct is to say he can come stay with me, but that isn’t an option either. I live in a single family house with my fiancé, and between the two of us we have four kids, and a twelve pound dog that thinks he is a human.
Where do you go when there is no home?
You go to a nursing home. And, unless you’re already on Medicaid, you spend down your remaining assets until they’re gone. In Dad’s case, it was to the tune of $12,000 per month. And, as you check-in, in addition to filling out pamphlets and pamphlets of paper, you’re asked for a cashier’s check for the first month’s rent.
The Scramble & Abrupt Conclusion
Assisted living requires a 30-day notice to break the lease with the facility. We’d already paid for August, even though he never lived in AL during the month of August (he was at Saint Ann’s the entire month), and on August 31st we were handed all the information about the need for the nursing home and its costs. We immediately notified AL of termination, then spent the next two days moving dad out of AL (which was indescribable), gathering a few things and moving him into a nursing home. We are still on the hook for September rent to AL, though Dad never stepped foot into the facility during September.
Once the bulk of the moving was complete and dad landed safely at the new nursing home, my sister checked in with hospice who assessed him and gave us the all-clear. Nothing was imminent, dad was responsive and chatty.
We collectively took a sigh of relief and finally allowed ourselves a chance to head back to our respective homes to decompress. A few hours later hospice called to notify us he passed.
My dad was always known to take an Irish exit. My sisters and I were very present for the last week of his life and were run to the bone at the point everyone decided to finally go home for a minute. If you read other posts… you know in addition to Dad going through this, Mom has a struggle of her own that also requires attention.
The Final Costs
The final costs of dad’s care are still an unknown. He’s been gone for six days. He was at Saint Ann’s for over a month. The Nursing Home said they’d prorate his rent and issue a refund in about 90-days. What remains unknown is what portion of his hospital stay, if any, will not be covered by Medicare. The decision to transition to hospice was done the Friday before Labor Day, but he could not be placed in a nursing home for more than a week due to the holiday weekend and labor shortfalls in our healthcare system. So there is about a one week period of a hospital stay where we are unsure what the coverage will be.
Funeral Costs
Having dealt with death a few times already, I knew I was not interested in a chain funeral home. I regularly see the costs of funerals, burial, markers, and services.
My dad was not a religious man. His passions were Jack Daniels, Diet Coke, Billy Joel, the Ohio State University, and boxed wine.
I met with a small family owned funeral home who is providing a direct cremation for $1,500. My sisters and I are trying to sort what a celebration of life will look like. Just writing the obituary has been hard as we cannot come to a consensus as to whether we write something honest and real or if we provide a more dignified summary that completely ignores reality.
Admittedly, I’m probably the hardest piece to this puzzle. The youngest in the family who was in-town and present for the entirety of it all, it is really hard to lionize a man that was largely absent, neglectful, manipulative, and abusive.
One thing both my father and I loved was Billy Joel, but the man unabashedly lived out the song My Life, turning a blind eye to the downstream effects of his behavior on his children, regardless of their ages or needs, and home alone with a mother who was clinically mentally ill and unmedicated. Yes, there were good times, and while I realize a lot of what happened to me was not personal per se… there is a lot of scar tissue that has become tender as I raise my own kids.
Chris, I am at a loss for words. Your article proves that you never truly know what a person has been through or is going through. I see your posts and in case you don’t hear it often enough, you are doing an amazing job raising your beautiful daughters and flourishing in your career. My thoughts and prayers are with you and your family.