Five Months, One Yellow Form, and … where are the flushable wipes?

This yellow form has been taped to our refrigerator door for exactly five months today (6/17/17).

Honestly, when I wrote last month’s “yellow form” post, I thought that would be the final one. My father-in-law’s body and spirit have other ideas. He celebrated his 88th birthday Thursday with a (tiny) sip of whiskey and here we are on the five-month anniversary of taping this do not resuscitate order to our fridge.

Today’s thoughts. Warning in advance: it’s always a challenge to balance his dignity with the fact that I increasingly believe it is critical for families who face caregiving to know what to anticipate and family who are in the midst of caregiving to know they are not alone. Bodily function mentions ahead.

Misconceptions Abound

At the risk of sounding petulant and whiny, I feel the need to clarify something. While I know every hospice situation differs, and various hospice agencies do things differently, the fact that a patient has agreed to let a hospice agency manage their care does not mean that a professional or paraprofessional health care provider is with them for substantial part of every day.

We are very grateful to Big Bend Hospice for the role they are playing in Dad’s care, for the medical supervision, the durable medical equipment we have been loaned, the woman who bathes Dad every week, but if I had a nickel for every time I have said “he actually still lives with us and we are the ones watching him 95% of the time (4% of the time is someone we are paying because we have obligations out of the house and maybe 1% is the Alzheimer’s Project volunteer or a Hospice volunteer),” I would be wealthy.

Example:

Primary Care Physician: “So you have a new home now?”

Dad: [insert pretty much nothing here because he can barely hear the doctor and that kind of abstract conversation is beyond him now]

Me: “He actually still lives with us and we are responsible for his care”

Rinse and repeat, time and again.

There is a facility, Hospice House, that provides respite care (thank you for the five days in April so we could leave town, Big Bend Hospice) and where he may end up toward the end of his disease process if he needs more pain management care than we can provide or other medical attention we are not qualified to deliver. But Hospice House has 12 beds and exponentially more patients than that. There are no guarantees.

Speaking of Pain Management

Another Hospice-related story (most of our stories these days somehow relate back to Hospice). Maybe the header of this section should be “When Paula found her voice” but here goes.

Dad has been on a pain management regimen for back/neck pain for decades. We have plenty of experience with the pain management world: traipsing to Publix with the paper prescriptions because they can’t be called in, various tussles with the bureaucracy of it all.

Now that he is under Hospice care, Hospice is responsible for his pain management. (One small silver lining of being under hospice care is you get a “pass” about the “paper prescriptions” part and the opioids just get called/faxed in.)

Tuesday, the nurse (who we adore) called in a refill for his opioid painkiller. When Wayne picked it up the next day, we had been given 5 mg instead of 10 mg. Why does that matter? It matters because Dad’s tumor is in his throat, and every swallow is a challenge, so having to give him two pills instead of one is just one more issue to deal with.

Wayne went back to Publix Thursday morning to address the discrepancy. They showed him the Rx and it did say five. I called Hospice to try to resolve.

When the nurse called me back Friday morning, I was driving. In Jacksonville. In the rain. Backed up in traffic. I couldn’t hear her because I was listening to a book so my phone was plugged into a cassette adaptor which had triggered the “mute” button. I almost ran into the car ahead of me as I juggled the phone, the nurse call, the mute button (future blog post: nothing is so important that you can’t pull over and/or let the call go to voice mail to evade an accident).

Her: The staff person responsible isn’t comfortable switching it to ten, so please keep using two fives.

Me: But he can’t swallow. Why subject him to two pills instead of one?

Her: You can crush them up.

Me: But he can’t swallow whatever I put the crushed-up pills in. Why can’t the staff person who admits she made a mistake just make one more phone call?

Paraphrasing, the rest of my commentary to the nurse (who, I repeat — we adore — we know she was just the messenger) was something along the lines of “why make something even more difficult for someone who is already dying? Why make our lives as his caregivers more difficult? We know mistakes happen but this can be fixed with one phone call. WHY won’t she take accountability for her error (and we know errors happen) and just do the humane thing for the patient while relieving us of the multiple trips to the pharmacy and all these phone calls?

I worry sometimes that I am getting tunnel vision and focusing disproportionately on the wrong things. But one phone call that can help a dying man have one less thing to struggle with seems like a battle worth fighting.

On a related note: I have many friends who are in the midst of long-term caregiving. Perhaps they have a child with developmental delays who always needs help with toileting needs and intense behavior management; perhaps they have a loved one with dementia. To a person, none of them consider themselves heroes or want to be told “I don’t know how you do it.” But I seriously don’t know how they do it. My hat is off to them, along with promising whatever support I can give once we are out of the caregiving business ourselves.

Poop and the Priest

You just can’t make this stuff up.

One of the ongoing struggles for us is the management of the toileting process.

[TMI ALERT — feel free to fast forward to the next bold header for less “elimination” related content]

It is BEYOND me how someone who eats so little still produces so much ……. end product. But the combination of short-term memory issues, motor function slowdowns, and the fact that our bodies are apparently hard wired to do their business no matter what is probably in our “top three” list of “what on earth do we do about this?” questions.

I don’t know why neither Wayne nor I have just taken over the “wiping” process but the cycle of frustration begins when Dad tries to use his hand (or one paltry square of toilet paper) and inevitably ends up with filthy hands.

We have discovered flushable wipes (yay!).

We have hired people to come in and help with “the bathroom cycle” when I am working on deadline. (We are paying more per hour than I am making but I consider it a short-term investment in preserving my quality of work and my reputation with an organization that, although I am a mere freelancer, I already like immensely — I don’t want to mess up any longer-term opportunities with them.)

But we really should be just taking over the whole process.

If you’re wondering where the priest comes in, here it is:

When Carol, the lovely woman who brings communion every week, was leaving Wednesday, we were talking about the fact that she will not be in town next Wednesday so we won’t see her for two weeks.

She asked if she should have the priest come and do the anointing of the sick. I said yes.

Little did I know the priest would be SO on top of things and would come the next day.

When he first called, I was smack in the middle of the aforementioned deadline-driven freelance work, so I said he could come but I would not be able to participate.

I don’t know what divine karma intervened, but he called shortly after to say he had been delayed and would be here around 1:30.

Poop, the Priest, and “Perfect” Timing

The beauty of the delay is that I was able to be fully present to chat with the priest and to observe him giving the rite for the sick. The predictably hilarious part of the delay is: of COURSE he showed up during the middle of the bathroom battle, when I literally did not have a hand free. My son couldn’t open the door for him because he was dressed only in a towel. It was a comedic scene worthy of a Laurel and Hardy show.

The good thing about most priests worth their salt is they “get” the fact that families dealing with caregiving and death and dying know it’s not always pretty.

Side note: thank you to everyone over the past few months who has overlooked the cat smells, the laundry mountain, the general disarray in our home and focused on Dad. I noticed, and you lightened my heart.

Measuring Time Differently

Understandably, Dad, a man who slaved away for FEMA for years, traveled extensively, and worked his butt off in a traditional job to support a family of eight, has never really understood that what I am doing here at my laptop is “work.” I get that.

Nevertheless, I have felt SO conflicted most of this past three years with managing the tension of the need to be a caregiver and the need to work, both to help the family’s bottom line, to be professionally fulfilled, and to keep my name alive in the eyes of potential employers, but the frustration of never being able to say (and be understood): “I’m working right nowhas been among the toughest sticking points.

When talking with the Hospice social worker (who we also love!), she something like, “well some families do have someone who is doing the caregiving full time but you are choosing to work.” WHERE ARE THOSE FAMILIES WITH SOMEONE ABLE TO DO THIS CAREGIVING PIECE FULL TIME?

Anyway, this week, as Dad went outside to smoke his beloved cigars, I went with him, basically to keep him from setting himself on fire accidentally. Three times this week I have sat there, on our back porch, seeing the view he has seen countless times over three years, sitting there alone as I worked. Although Wayne (husband) is definitely his preference for someone to keep him company, these moments resonated with me. There was no dollar figure per hour attached, but it was a different kind of currency, one that mattered.

Not Knowing What’s Ahead

I suppose it’s a bit disingenuous to imply we don’t know what’s ahead.

I remember, the first time he had cancer in his neck in 2015 (that was mostly successfully managed with radiation), his radiation oncologist saying “you don’t want to not treat this — it’s not a good way to die.” I googled head and neck cancer and the death process when it is left untreated. Once.

Lo and behold here we are now, with a loved one whose death is going to be hastened by untreated throat cancer (there were no viable radiation and/or chemotherapy options this time).

My online friend Laurie wrote a beautiful memorial tribute to her friend Susan. One of the things she said was, “ We’re taken when our role has ended.”

Laurie’s line resonated with me. Her post wove in a few concepts from theatre and plays. I was recently chatting with a friend about A Streetcar Named Desire, which is playing locally. My theory is that although the Blanche character obviously is the focal point of the show, it takes a strong supporting cast to provide balance. My friend said “it’s all about Blanche.”

Maybe for whatever reason it still needs to be all about Dad for now. Maybe we, as the supporting cast, still need to grow and find our voices.

We still need to grow, find our voices, AND replenish those flushable wipes.