HIYA:  Patient Advocacy was Her Calling and Salvation

Before I add more to Hiya’s last few days and months in the rehabilitation center, I need to be upfront with you.  I found it very difficult to be a caregiver, especially for someone who was not family.  For seven years, I kept an “arms length” distance from Hiya and let her know I was deliberately maintaining a distance.  She was the kind of analytical and pragmatic person who could tolerate direct communication. She and I both acknowledged that if I were to give her the 24/7 attention she craved and in many respects needed, I would sacrifice my marriage, family, and job. This decision was very difficult for both of us.  I don’t know if I could even sacrifice everything for a family member at this moment, but if the disease were in my body and I needed someone to supervise my care and help me get through the day to day, I would probably be as selfish and self-preserving as Hiya appeared to me and to others. And, in all honesty, I was being selfish and self-preserving by maintaining a personal distance in order to maintain my status quo — my equilibrium between marriage, family, and job. I marginalized my feelings by saying and believing that in many ways, end of life journeys need to be made alone.

The Next 30 Days…

With 30 days left in Hiya’s Medicare/Medicaid coverage for care facility stay, I was concerned for Hiya.  Where would she go?  How could she even physically muster enough energy to move out of the facility?  We both researched and called other facilities, but were not overly concerned about it as you might think we needed to be.  Perhaps we thought a miracle would happen or that the 30 days would outlive Hiya.

In any case, the 30 days came and apparently without a court order or nasty-gram from Medicare or comment by the care facility staff.  When I asked Hiya as to whether she had received notice from the agency, she brushed the question aside as if it wasn’t worth her energy to answer it.  To this day, I don’t know if the deadline had truly been acknowledged or not.  I can only assume that the care facility made a management decision, and a compassionate one at that, to let Hiya remain in the facility for her remaining days, without coverage or reimbursement to the facility. Perhaps there is some humanity in managed healthcare after all.

Not everything stayed the same however.  Attitudes among the staff and head caregivers seemed to change; interactions became more contentious and Hiya was left to wait longer and longer before requests for aid were answered.  At least this is the story I received from Hiya.  Of course, when I was visiting I didn’t see any of this lack of attention.  The only clue I had was the eyeball to eyeball look between me and the charge nurse mutually acknowledged that “yes,” Hiya was demanding and a handful.

And, why shouldn’t she be demanding? It was her life she was fighting for.  Other than the weekly visits from me, there was no one else spending time with her to fight for her and with her.  A self-advocate for all her adult life, Hiya knew what she needed and knew what the care team should be capable of.   Getting them to deliver was the challenge.

One example of this was shower time.  Hiya refused to shower in the facility unless it had been properly cleaned and disinfected.  Before selecting the shower stall she would have staff wheel her into each one so that it could be inspected.  If it had any remaining hair near the drain or smelled remotely organic, Hiya would quickly disqualify it.

On one weekend when she desperately wanted to shower and staff had not come to help her do the stall to stall inspection, I wheeled her around.  Although none of the stalls truly measured up to satisfaction, I did come upon a solution.  You see it was Hiya’s aversion to her bare feet touching the shower stall floor that was the primary reason for her concern.  She did not want to contract any more disease from anyone.

After a short trip to CVS/pharmacy for two pair of plastic, industrial looking sandals, Hiya was finally able to comfortably select and take her showers. Sometimes solutions come easiest to those of us on the outside looking in.

Holding Onto

Days passed and Hiya grew weaker in direct proportion to her room getting messier.  The condition of her room now mimicked what I only can imagine the house she left must’ve looked like.  On the floor on both sides of the built in armoire that served as a small closet, were piles of plastic bags containing papers, receipts, boxed food and more bags. There were also two chairs in the room which both had papers, spare towels and pillows piled on them. Even a portion of the end of Hiya’s bed held a stack of papers.  And, the bed tray attached to the side of her bed was stacked with old empty cups as well as the tray of leftovers from the more recent meal that had been delivered. However, Hiya’s most important documents and personal bag that served as her purse were in hiding somewhere underneath clothing and shoes in the armoire which she would uncover when I took her out to a store.

Now that she had the entire two patient bedroom to herself, the additional bed had become another storage location.  More papers and trays of partially eaten food were on the bed.  Hiya didn’t usually finish her meals at one time and would have staff cover leftover food and leave on the spare bed, sometimes in bowls of ice to keep fresh.  She usually saved bowls of cottage cheese, applesauce and cups of juice.  Staff had grown accustom to Hiya’s hoarding tendencies and would tolerate the saved food and piles of paper and bags. Occasionally, Hiya would request staff bring her the leftovers or she would stand and visit the spare bed to review what was there, but most often the food would sit for half a day, untouched and eventually be cleared away, which Hiya learned to tolerate.

On one particular visit, I picked up papers off one of the chairs so I could sit down and noticed an old to-do list from a former helper of Hiya’s.  I suggested to Hiya that I could throw it away since it had no purpose any more.  Hiya quickly said “no” and that she still found it “interesting.”

After that small interchange, I realized that like everything at her house, Hiya had an obsessive, compulsive need to hold onto everything, no matter how trivial, with which she felt ownership.  While certainly far from trivial, her life of course was at the top of that list — Holding onto all that she could.

Letting Go

It was 3:00 p.m. on a Tuesday in July when the call came.  I was in the middle of several projects at the office.  The caller was a Hospice chaplain – a calm sounding woman who told me Hiya was not responding to those around her and that they wanted to help her, but they couldn’t because Hiya had not signed the DNR (Do Not Resuscitate) form.  The chaplain asked me if I would join them to see if Hiya would recognize me and become lucid enough to get the DNR signed.

Different hospice volunteers had been making periodic visits to Hiya at the Center at Hiya’s request for about three months.  She was cycling through people hoping to find someone who would provide her with light healing touch and care – actually light massage was what she really sought, but she didn’t have resources or insurance coverage for a licensed masseuse, so the tender, kind nature of hospice workers was a second choice in her mind.

During this period, one after another hospice volunteers had tried to get Hiya to sign a DNR so that when the time came, Hospice would be legally allowed to help her die as comfortable as possible.  Like many other matters in Hiya’s life, she had put off this task which really was no more than a signature on a form.  Perhaps she wanted an attorney to review the document for authenticity; perhaps she didn’t think it would be necessary because she still thought her health would improve thus allowing her to walk out of the Center and back into her life; perhaps she was just a procrastinator.  My observation was that the signature meant a loss of control and the acknowledgement that the end of her journey was closer than she wanted to accept.

When I arrived at the Center 30 minutes later, the Hospice chaplain, Dorothy, came out of Hiya’s room to greet me and bring me up-to-time on Hiya’s status.  Dorothy’s quiet and confident voice, temperament and demeanor instantly put me at ease and transferred a calming strength that I immediately needed.

In addition to Chaplain Dorothy was a younger Hospice volunteer sitting at Hiya’s bedside holding Hiya’s hand.  Hiya’s eyes were closed and her breathing was fast, short and shallow.  She was struggling and trying to hold on.  I went to her other side; gently touched her arm and spoke to her softly trying to get her to open her eyes or turn her head toward my voice.  It was as though she was already mentally somewhere else.  “Hiya, sweetie, it’s Karen.  Please, please look at me.”

When nothing I said seemed to stir her, the nursing director who had come into the room offered that they could give her some saline to see if that would revive her enough to be able to get the OK for the DNR….at this point we didn’t even need the signature; a mere nod from Hiya would have been accepted.

By the time the nursing staff had managed to record the upcoming procedure and assemble the necessary equipment for the saline IV, about 15 minutes had passed – that’s probably the fastest response that had ever been provided to Hiya since she had entered the Center ten months earlier.   Hospice and I had been asked to wait just outside the doorway since the room was too small and cluttered with Hiya’s many piles of papers and bags to allow more than about three people in the room at a time.  The director sat down next to Hiya and reached for her arm to insert the IV needle, but she instantly pulled back and stopped.

“She’s already lost temperature and is cooling,” the director said in an exasperated, quick, rough tone after touching Hiya’s cooling and clammy feeling skin.  “We cannot proceed; we need to call 911 now.”  The pace of attention to Hiya which had already increased several degrees since the director had first entered the room now had picked up considerably more.  I’m not sure if experienced healthcare professionals and paramedics are immune to adrenaline surges after having experienced hundreds of similar circumstances, but my adrenaline was pumping uncontrollably.

The director left the room to call 911.

Not sure what I should or could do, I felt lost and unneeded standing outside Hiya’s personal nesting space which was being immediately renovated to make way for the large emergency gurney expected minutes later.

Dorothy saw my bewilderment and helped me understand what would be happening in the next few minutes and hours as we waited for the paramedics to arrive.

“Without the DNR, we (Hospice) cannot be of any further help to your friend.   Thank you for coming so quickly to try and help.  Hiya is very fortunate to have you as a friend.  You’ve also done all you could.”

I, on the other hand, felt like I’d done nothing.  Hiya had called me two days earlier complaining that she couldn’t get staff to help her with something, but her voice was faltering and I’d had trouble understanding her.  I did not go out and visit her that afternoon and regret not having done so.  However, I had emailed Hiya’s brother indicating that her health was deteriorating quickly and that he may want to come to see her.

“Should I go with Hiya to the hospital and follow behind the paramedics?” I asked Dorothy.

Quietly, calmly and assuredly, Dorothy explained that I could go to the hospital with Hiya if I wanted to, but that without the DNR, the emergency staff was required to do everything in their power to revive her and “save” her from dying.  Dorothy explained in more detail that this effort would not be pleasant and would be highly traumatic for Hiya’s frail body; that they would likely break her ribs in the effort to resuscitate her. That this was exactly what Hospice was trying to save Hiya from having to experience.

“How do you want to remember your friend?”

Hiya needed me two days ago; not now.

After the emergency truck had left the Center with Hiya barely holding onto life’s threads, I reluctantly went home.  It was now 5:30 p.m., just two hours since I’d arrived at the Center, but it felt like an exhausting, surreal dream in which I had emotionally been drained of all energy and motivation.

Still not sure what to do next, my husband reminded me that we had a business event we were scheduled to attend and he urged me to go with him; that it might help me get my mind off Hiya for a little bit of time.

I got the call at 9:30 p.m. that evening while we were out.  The ER nurse informed me that Hiya had just passed and that she was “comfortable” at the time.  I asked if Hiya had regained consciousness and the nurse said that she had and that she knew where she was and what was happening.  She was comfortable and without pain – probably the first pain free respite that Hiya had had in many years.

At long last, surrounded by a qualified medical team and out of pain, Hiya let go and was free.

Affirming “After Story”

Shortly after Hiya’s death, I was contacted not once but several times by relatives of Hiya’s.  These phone conversations were startling and unfortunately affirmed much of what I’d gleaned from Hiya’s stories that she’d told me over the years.  For while I may have written her family members in a particular way, in the back of mind I wondered how true to fact they were — after all I had only heard Hiya’s side of the story.

These relatives were going through her house at independent times from each other.  They had made cross country journeys to get there.  (Why were they not able to make these journeys to help Hiya when she was suffering and needed help most?)

The first call was to thank me for having been a friend to Hiya.  They called me her “angel.”  They’d evidently found cards Hiya and I had exchanged since Hiya saved EVERYTHING.

The second call was to ask me where Hiya had hidden the family’s heirloom jewelry.  Ahhh, there was the motive for the visit.  I should’ve known – Hiya was not prone to exaggeration; she had characterized her estranged family accurately.

“I don’t know” was my first response to this question posed by Hiya’s brother.  He pressed on with his “thank yous” and plans for her memorial service which was scheduled a number of days out.  When asked about the jewelry again, I had decided that since he was her closest living relative that there was no advantage to be gained by not being helpful, so I offered up a best guess as to where Hiya might have placed the valuables in her overly cluttered storage facility otherwise known as her home.

I surmised that the valuables were probably in the safety deposit box she had had sent to her – the box which we never got to go through together so I could be the inventory witness for her.  Her brother didn’t know where to start searching for the box – he was calling from her home.  I imagine he felt overwhelmed by the mess and clutter.  Fortunately the safety deposit box was bigger than the needle in the haystack.  I told him to start in her bedroom which is where she had spent most of her time.

He must have found it because several weeks later the next set of relatives called me and asked me the same question about the family’s heirlooms.    They were two of Hiya’s cousins who had ended up (or volunteered out of greed) to clear out her house so it could be placed on the market for sale.  After first thanking me for caring for Hiya, they complained how difficult a time there were having clearing her house and how long it was going to take.  I had little patience for them and asked why they had never come out to see Hiya or offer to help her when she was so ill.  They claimed they had no idea how poorly she was doing, which I knew couldn’t be true since Hiya had called about everyone she knew seeking help.  I raised my voice in anger at this response which elicited both guilt and tears from the woman on the phone.  After all Hiya had been through I felt justified.

Even odder about this conversation however was that that the woman I was talking to kept repeating every word and sentence I said as if the second cousin was in the background taking dictation – Hiya was right again about how litigious and untrusting her family was!

Anyway, I told them I had told Hiya’s brother about the safety deposit box assumption as the likely place for the valuables.  They had indeed found the box on her bed – completely empty.  Not happy with me at all for having talked to Hiya’s brother, they proceeded to tell me what a selfish and nasty person he was. Completely out of patience at this point, I cut them off mid sentence and wished them well.  I felt satisfied that I’d had a chance to chastise a couple of relatives on Hiya’s behalf.  You’re welcome, Hiya.