Navigating the Terrible

It all started 52 days ago. I was out for drinks with Cousin Jim and we were relaxing and reminiscing. My cell phone rang. It was my mom asking me to come over and help get my dad off the floor. This was not the first of such calls, in fact, they were beginning to become more frequent over the last year. In the past, I had urged my mom to call 911, as it seemed the more prudent approach. But, just I did not call 911 when I fainted and hit my head, she has been reluctant to make that call.

Thankfully, Jim was free and could come with me, as I do not believe my mom and I could have gotten my Dad up. He was so weak. We could not tell why. He has been prone to fainting spells of late, but this time, he remained fully conscious. He just could not lift himself up, nor could he assist us in any way. We were able to get him into the family room, where we pulled out the sofa bed and put him there for the evening. The next day, my mom could not get him to move, so off to the hospital they went.

He was admitted that evening with a urinary tract infection.

The next day, the doctor came by on his rounds and informed us that Dad could be discharged in a matter of days, but that it would be to a rehab facility, not home. While this may have come as a shock to my parents, I was not in the least bit surprised. He had been in a slow but steady decline for the last couple of years. All my attempts to get my parents to focus on more practical living arrangements had been met with resistance. They did try to sell the tri-level town home two years ago, but a series of significant calamities made the process virtually impossible. Plus, there was not a single interested buyer in the several months that the property was on the market.

The next day, when I called my mom to make plans for returning to the hospital to visit dad, she was hysterical. She had been in contact with the social worker that morning and been informed that the plan was to discharge my dad that day, directly to the rehab facility. Now I must add that my mom spent the better part of a month choosing a new insurance plan when the premiums for their old plan were due to increase. While I was only able to sit with her for an hour or so, wading through the plans and co-pays, co-insurance and deductible numbers, she made a ton of phone calls and compared plans and second and third guessed herself until she ran out of time and had to make a choice.

What she knew about her new plan and Medicare was that if my dad did not stay in the hospital for THREE days, his subsequent stay at the rehab facility would not be covered by insurance. My parents would need to pay out of pocket, as the social worker so nonchalantly informed my mother.

This was stunning. I put in a call to the social worker, but was forced to leave a voicemail. I urged my mom to pull herself together for dad’s sake and we met at the hospital. I immediately took a nurse aside and explained the dilemma. She told me that she had observed a rash on Dad’s back that might be a reaction to the antibiotics he was on and that could provide the basis for additional time in the hospital for monitoring.

My conversation with the doctor did not go as well. I explained to him that if, in fact, he was planning to discharge Dad that day, we would be taking him home, as we did not have the resources for him to go to a rehab facility without any insurance coverage. He became quite defensive and tried to explain that it was the system and not he that was the problem. He also emphasized that he could get in trouble by “fraudulently” keeping Dad an extra day. I couldn’t have cared less. Here was an 87 year old man with advanced Parkinson’s and a UTI and this doctor was going to declare him medically appropriate for discharge after less than 48 hours in the hospital. His assertion that he would have to somehow misrepresent the need for an extra day’s stay was mind boggling.

As it turned out, Dad was not discharged that day, nor the next, as there was no availability at any rehab facility. So much stress for absolutely nothing.

Dad was in the facility 47 days. There were many great things about this particular place. Lots of therapy offered, good food and lots of stimulation: bingo, prayer services, current events updates, books, TV, and my absolute favorite, an aviary, where a dozen or so beautiful little birds flitted about filling the room with their unique songs. We had a care conference where we were informed that at some point, when it was determined that Dad was no longer benefiting from the therapies, he would no longer be covered under Medicare and would thus be discharged. Plain and simple.

It was at that time that my mom gave me one of the “Evidence of Coverage” books that she had received from her chosen insurance company. As I glanced at it, my first thought was that there seemed to be no extra coverage beyond what Medicare covers. I will have to make a call to have this explained to me. It would seem that, by paying a monthly premium, my parents should be entitled to something beyond basic Medicare. Otherwise, what is the point?

And in the meantime, their townhome had to be rearranged. My mom hired movers to relocate the upstairs bedroom to the main level. The adjoining bathroom was equipped with medical equipment that is not covered by insurance. Astounding when you consider that it was listed as a required item if Dad was to be allowed to go home.

Several days before discharge, my dad underwent a video swallow study which revealed that he has significant dysphagia, or difficulty swallowing. Because food can pass into his lungs, he is at a high risk for aspirate pneumonia. So now all his liquids have to be thickened and his food needs to be moist and easily swallowed.
As far as I can tell, none of the dietary aids that he will need (possibly for the rest of his life) are covered by insurance. In a phone conversation with my mom, I first heard the term “pureed bread mix.” Neither of us had any idea what that was. Thank goodness for Google. I was able to find all the pertinent products on various websites and make some initial purchases.

My dad has qualified for several weeks of home health care coverage. We were not given much more by way of details, but both my mom and I worry that 2-3 weeks might not be enough.

While discussing our predicament at lunch with a friend, I learned about hospice care and what it really is. The word hospice always brings to mind someone with terminal cancer and three weeks to live. However, I have learned that it can start as a six month increment and be extended if the patient is still alive. The kinds of things that are included in hospice care are amazing things that every elderly patient and his family should be entitled to: 24/7 access to medical care, social workers, speech, physical and occupational therapists, clergy or other counselors and trained volunteers. These things are 100% covered through Medicare. The trick is being determined to be eligible for coverage. A doctor needs to certify that the patient has a terminal illness with less than six months to live. This period can be extended if the person is still alive after 6 months, but it is a bitter pill to swallow (no pun intended) to request that your doctor make this certification.

The day after the swallow test, my mom called me late in the evening, sobbing as she told me Dad’s weight was down to 143 lbs. His appetite had been decreasing over the last year, but he always seemed able to eat things he liked. Apparently, after the swallow test, he was given his dinner in the form he was now supposed to consume it. No surprise, he rejected it. And then told my mom about it.

The next day I spent about a half hour talking with a wonderful nurse who works with Dad’s GP. We went through the criteria for hospice care, one of which is a 15% decrease in weight. Dad seemed to be getting close. However, I surmised that he might do better once he got home. But one of the things I was hoping for was emotional and psychological support for them as they go through what might be the last chapter of my dad’s life. And who knows how long this chapter might last? That type of support is covered by insurance through hospice care, but does not seem to be covered anywhere else.

What a shame! This chapter is challenging, to say the least. My mom vacillates between feeling completely overwhelmed, to asserting that she can do it all. My family uses humor as a coping mechanism and laughter has been our go to remedy during the last 52 days. I am fortunate that I have the financial wherewithal to assist my parents by providing them with the thickening liquids and pureed bread mix that might not otherwise be within their reach. I am so proud of how we are all managing to muddle through this. But trying to figure out insurance coverage should not be something that a Parkinson’s patient and his elderly caregiver should be saddled with at this stage of the game.

And so, I will continue to advocate for getting them the best care we can find within the insurance coverage they have. Thankfully, it’s something in which I have experience. :)