16 April 2015

Hospice Referrals Uncover Daughter Denial

My parents had doctor appointments this past Tuesday. Taking my 90 and 91 year old "twins" to the doctor is what I imagine it feels like to run a "mini-marathon". In addition to the patients, there's a walker, cane and two wobbly folks to navigate into the behemoth of Wilmington Health Associates. Upon entering the waiting room, I seated my parents and went up to the desk to check them in. They both remarked what a lovely building it was and swore they'd never been there before. It is a lovely building but they'd probably been there about 40 or 50 times in the last few years however, according to them, this was their first visit.

In no time at all, we were called back for weights and vitals and then we followed the kind nurse to an examination room where we waited just a few short minutes for Dr. Babiss. She soon appeared with her usual sweet smile and kind manner and greeted all three of us warmly. Mom and Dad smiled but were mostly non communicative, choosing instead to hold each others hand. This wasn't lost on Dr. B and she motioned for me to move closer so that we could chat. She wanted to know how they were doing...really.

I revealed that probably most of the time my mother doesn't really know me and is positive she is visiting from West Virginia, where she firmly believes she still has a home. She rarely moves from the chair in her room and most of the time she seems to be in a daze.  As for my Dad, he's begun to wander, but quite selectively. If I'm home, which I am 99.9% of the time, he stays in their bedroom but if I announce that I must run to the store, he immediately grabs that opportunity to do things like walk out back and head for the pool shed, amble around the front yard or, in the case of this past Monday when I made a mad dash for Harris Teeter to pick up dinner, he'd taken a 100' extension cord from the front porch and had it stretched out in a most interesting configuration right where I usually park. I jumped out of the car and asked him what he was doing? "I'm taking care of this cord - it was rolled up on the front porch," he matter of factly reported. When I asked why, he just shrugged his shoulders. I asked him about his promise to me that he would stay inside with Mom while I was out of the house and he said he had no memory of making such a promise. Oy veh! I might as well been talking to the extension cord he was playing with and twirling around. I grabbed the cord and quickly wound it up and put it in the garage so I could pull the van up to the house. Puzzled but nonplussed, he simply shook his head and toddled inside.

I told Dr. Babiss that the wandering was becoming worse each day and I'd noticed that as the afternoon transitioned into evening, he was exhibiting agitation and restlessness. Door locks are checked dozens of times as he makes an endless loop from the front door to the side door to the sliding glass doors. In fact, he generally doesn't stop this until I physically lead him back to his room and faithfully assure him that the house is secure and locked tighter than a drum. Even then, I don't think he quite believes me.

Dr. Babiss tried to engage both of them in some conversation but it was futile. I attempted to assist by asking Mom to tell Dr. B who had visited us last week. My Mom thought for a minute and then said, "I don't remember". I pulled up a photo on my iPad of my Mom holding my daughter and son in law's twin babies with Katie standing on one side of the chair Mom was sitting in on and me on the other. My mom smiled at the photo but had no recollection whatsoever of the visit or anything connected to it.


After explaining what our lives were like, Dr. Babiss very kindly told me it was time to get some help and she told me she was referring both of them to hospice. She apologized for not having suggested it sooner but there was no doubt in her mind that it was definitely time.

Upon hearing this, hearing that I would be receiving some help, extra hands, readily available resources, I was nothing short of ecstatic. I was thrilled. She finished up the exams by listening to my parents hearts, retaking their blood pressures and warmly patting them on their arms. They returned her smiles. 

When it came time to check out at the desk, thinking we would be setting another 6 month appointment, the woman who takes care of these things explained that as we were being referred to hospice, they would most probably take over my parents' medical care, prescriptions and all that goes with it. It didn't quite register at that moment, but my initial happiness at expecting care assistance developed a tiny crack. I was too busy to dwell on it at that moment as I had to walk with my parents to the lab for a brief bloodletting. 

When I returned home and helped my parents navigate the steps to enter the house, I put their dinner out, made coffee and then went outside to think about all that had taken place. I still felt very pleased that we now had hospice referrals, but what I didn't realize, didn't count on, was the almost imperceptible sinking feeling that was beginning to trickle into my heart. I couldn't identify it, but there was this quiet heaviness that was invading my body.

When I woke up the next morning, the tiny trickle of dread had somehow, overnight, turned into a full on flood and it hit me square between the eyes...actually in the eyes because I was crying and it took my mind a few minutes to catch up with my tear ducts and identify the cause.

Hospice. That word. Initially I didn't tie it to the concept of "final phase". Though it was difficult initially to accept that my Mom didn't seem to know me most of the time, and that my Dad couldn't remember where we lived before we moved to Wilmington or who our neighbors are or where the milk is kept, I'd made my peace with those deficits without even realizing it and apparently I'd just assigned it to aging but not to an end. 

It's sort of like I "knew", but I didn't "know". I went from feeling grateful for incoming help to thinking, Oh My God...this sh*t just got real and it's a double dose of real. Crap - I just wanted help, assistance, a respite, I didn't want to think about death or end stages or continued rapid digression. No, no, no, I just asked for the "help" part. Thinking back to my incredulity of a few hours ago - I can't help but marvel at how brilliantly our minds can construct barriers and vast "mental moats" to keep us from accepting the cold hard facts of life. I mean, honestly, did I think they were going to go on forever and believe Mom and Dad were just drop a few cognitive abilities here and there but still be present and accounted for?

Apparently I did. 

I called an emergency lunch with my dear sweet Sharon and over Italian comfort food at the O.C., she held my hand and walked me through my sadness and helped me make some sense of it. Additionally, she has offered to be with me when hospice comes to meet with us on Friday - I don't often ask for help but I grabbed at her offer because I need another pair of ears in case mine shut off. 

I have no idea what to expect because we're on a new trail and my internal gps must be reconfigured. I'm treading water right now and I can do that until I'm given my coordinates. I'm sure I'll be given some good direction tomorrow afternoon.

In the meantime, we carry on. However, I find myself dropping tears all over the place. My mind is a million different places and I feel just a little disoriented but that's OK. I don't like this part of the program but my good friend Bobbi has told me there will be beautiful parts during this stage and she's never lied to me or lead me astray. She's personally been over this course a few times and I trust her. I am buoyed by so many messages from my social media friends who are reaching out and texting and messaging me courage and strength. It's huge and it steadies me. My Cleo and Sailor seem to intuitively know that we're heading for some heavy weather and they are literally circling ever closer to me. Thank God for my faithful furry family. 

I guess I shouldn't be too shocked - my parents have always made it a point to do EVERYTHING together - so the prospect of dual hospice referrals really shouldn't come as a huge surprise. They are inseparable.

I'm not sure what the road ahead looks like, but I'll find out sooner rather than later and until then, to quote James Taylor, "I know now, love is all that matters in these days...".

We'll be ok.