Hospice Arrives - So This is What It Feels Like to Exhale??

Lightning fast. That's the speed with which my focus changed during the first fifteen minutes of my interview with the Lower Cape Fear Hospice. I entered the process feeling sad and maybe even a little disconsolate that both of my parents were about to be admitted as hospice patients. Just a couple of minutes into the one-on-one interview with the hospice admissions nurse I realized we weren't in the club yet.

On paper, Lisa shared that the information she had gleaned from their medical records didn't make my Mom and Dad what one might call a "slam dunk" for the program. I filled in what blanks I could with impressions and facts of their past three years of history as my captive patients, but a lot would depend on the admissions nurses clinical impressions. 

After answering something like 45 minutes worth of questions, it was time for the nurse to, literally, "meet the parents". I escorted Lisa into their room. My Dad was still in the middle of an intense two hour plus nap, so I introduced her to my Mom. Lisa was very engaging and my Mom was gracious and accommodating. She allowed Lisa to take her vitals, various measurements and happily answered her questions. "Miss Maxine, who is this lady?", pointing to me.  

My Mom grinned, hesitated and then confidently stated, "She's my...she's my coworker. We get along great!". That was a new one on me - for months I've just been Susan - not to be confused with her daughter Susan, and sometimes I've been "that girl" and "what's her name". 

It was now my Dad's turn and he was still deep into his nap. I sidled up beside of him on his bed and said, "Daddy, you have company. Someone is here to see you. Wake up." Slowly his eyes fluttered and he looked around and saw the pretty lady smiling at the end of the bed and he worked his way into consciousness. "Hello there" he said as he reached out his hand to grasp hers. 

Daddy agreeably consented to the blood pressure cuff, pulse ox monitor and ankle and upper arm measurements, occasionally looking at me with a bit of a puzzled expression. When Lisa asked him who I was, Daddy hesitated and said..."I think she's my daughter. Whoever she is she spoils us rotten." He answered a few other questions - some of them right and a few of them not so right. 

After about forty minutes of checking over my parents, Lisa thanked them and we headed back into the hall. I searched her eyes for a hint at what she was thinking. She asked if there was a room she could use to go over her findings with the doctor who would make the final decision. I invited her to use my office upstairs. Of course, I pointed out all of the framed photographs of my three granddaughters and she appropriately agreed with me that they were most beautiful babies to grace the earth. (Good job, Lisa!). I then went back downstairs to join my best friend and "executive director of my support and sanity", Sharon. We held our breath, exchanged anxious glances and waited. 

I began hearing the "Jeopardy" theme song humming in my head. Crazy - just two hours earlier I was despondent over the fact that both of my parents were about to be admitted to hospice care and now I was scared out of my mind that they wouldn't qualify. Go figure. It was only 3:00 PM and I'd already been on a mental/emotional rollercoaster of epic highs and terrifying lows. Sharon was perfect; kind and just as concerned as I was, but having her right beside me was the most comfort I could hope for and I dearly appreciated her support.

After about thirty minutes, Lisa came downstairs and we reconvened at the dining room table. Sharon and I were both scanning her face for a hint at the verdict. Lisa pulled out her computer, two folders and a pen - as it turned out after discussing our caseS with the doctor, we were given the green light. 

Insert a gigantic, relieved and genuine "WHEW!". I believe Sharon and I exhaled in unison.

Then came the paperwork - material that Lisa had to explain to us and forms that I had to sign. I had absolutely no idea what all hospice might cover but whatever it was, it would be more than I had and my resources and reserves were running low. Lisa handed me two life preservers and I grabbed them and clung to them for dear life.

My parents' medical care will now be under the auspices of hospice. That means that if someone falls in the middle of the night, I no longer have to figure out how I'm going to go with one to the ER and wrangle the other one with me because neither of my parents can be safely left alone. When I allowed my mind to take that information in, it was only at that moment that I realized what a paralyzing fear that had been for me. Every night I'd go to bed with a hundred or so possible nocturnal terrors playing a vicious game of tag in my mind and at the moment we were officially accepted into hospice, it was as if a giant, powerful and benevolent playground monitor chased those terrorists away and locked the gate so they couldn't get back in to harass me. Call it hyperbole if you like, but that's exactly what it felt like.

With a few signatures, I was to learn that if one or both of my parents experienced dizziness or signs of an impending stroke, or fell on the way to the bathroom, or spiked a temperature out of nowhere, or was suddenly incapacitated, no matter what the time of day or night, all I had to do was call the 24/7 hospice number and they would COME TO US. You have no idea how huge that is.

Durable medical equipment. Ummmmm, yes, my Mom does need a new walker and I've felt for months that my dad's cane was inadequate for his unstable, wobbly gait. With a few keystrokes Lisa ordered us two new walkers - walkers with SEATS! OMG OMG OMG!!!!   Ding, ding, ding, ding - I was beginning to feel that I was the winner of the lightning round of a game show. When she suggested a bedside toilet, I started looking up at the ceiling expecting it would open up with balloons and confetti because I had just been named the GRAND PRIZE WINNER!!!! 

If Lisa would have stopped at "bedside toilet", I would still have felt like the winner of the Powerball, but she went on to inform me that if/when the time came for hospital beds, they would be delivered and guess what? It's covered by Medicare. I looked over at Sharon, who's mouth was open just as mine was and said, "Get out of town.". I also looked to Sharon for confirmation that I was hearing all of this right - I mean, is this for real?

Now, my reaction to these benefits may appear to be over the top but I assure you it is not. Imagine taking complete and total care of a 90 and 91 year old, who happen to be your parents (so these aren't just any Joe and Jane Doe), who are completely dependent upon you for meals, meds, remote control...control, laundry, beverage delivery to keep the fluids coming and the UTI's at bay, medical visits and oh yes, walking, getting up out of chairs and keeping them out of harm's way and eventually arriving at the point where it's no longer safe to leave them alone with any level of confidence for the 20 minutes you dare take to careen through the grocery store aisles in an attempt to gather enough groceries for a meal or two and return home before the inmates take over the asylum. That's a "run on sentence" because it's been a "run on existence" for the past few years.

Let me tell you...offers of brand new walkers, a bedside toilet and the promise of a hospital bed if/when the time comes, not to mention a CNA who will be visiting us to assist with showers and personal care (huge!!)... the prospect of new durable medical equipment, visiting nurses, CNA's, nurse practitioners and a few hours a week of someone "holding down the fort" so that I have the opportunity to take care of things in the outside world without worrying if my house is in the process of being burned down - I promise - you would find yourself squealing with delight.

It's a crazy life where a grand prize of two admission tickets to HOSPICE could be considered a "grand prize" but, trust me, I'm in the middle of a crazy life.

Where do I sign, Lisa? 

...and in a moment that could only be orchestrated by a power much greater than myself, the doorbell rings right in the middle of the meeting and a man hands me the most beautiful vase of daisies and small pink roses; a heartfelt gift from a dear, sweet member of my inner circle who lives in Nantes, France and who has been a steadfast source of support and love for over eighteen years. Michel sent flowers to brighten up an extremely emotional, stressful day. I can think of no better time to be reminded that someone is thinking of you and channeling the best of thoughts than in the middle of hospice admissions. That's pretty amazing. I'm completely blessed.

So yes, the entire process took three hours and throughout the evening I felt my head swimming with all the information I had been given. "Did I hear that right?" and "Did Lisa really say that?", only reconfirmed my gratitude for Sharon's presence, who selflessly donated an entire afternoon, an extra set of ears and questions I didn't think to ask.

Please don't misunderstand...I know we haven't relocated to "326 Easy Street", but I can tell you that we're in a better place. Besides, I know "Easy Street" is a place of transition and one is never afforded the chance to put down roots there. We're all just getting by the best we know how. 

In addition to Sharon and Michel, I felt the presence and comfort of so many of my friends and family sending me positive thoughts and prayers, text messages and phone calls that reminded me of love and support from near and far away.

The cherry on the ice cream sundae appeared after dinner Friday Evening. I heard voices downstairs and as I walked into the living room, there was the ultimate stress-reliever in the form of my granddaughter, Evelyn, along with her Mom and Dad. Hugs and smiles from a seven month old sweetheart soothe the jitters of a long day and she worked her magic. My daughter in law and son offered comfort and we all rejoiced that, as many of my Facebook friends suggested, "Angels are on the way!".

I didn't really understand what all those comments about angels and helpers meant prior to Friday. 

Now, I know.

For My Parents - "Reality" Really Does Bite

We've had a very busy two weeks. My daughter, son in law and my twin five month old granddaughters paid us a most welcome visit over Easter. I can't even express how excited I was for so many reasons. My twin granddaughters were a mere three weeks old when I flew up to visit them in late November and now they had tripled in weight and are wholly interactive little people who laugh, smile and melt hearts without even trying. My first granddaughter, Evelyn, who is seven weeks older and lives with my son and daughter in law here in Wilmington, was able to meet her new cousins for the first time. Imagine the thrill - I had my entire family, including my parents who are 90 and 91 - talk about a generational span! There were so many poignant, funny, absurd, crazy and unexpected moments that can only happen with three babies, four young adults, a fifty something woman and two folks who are wildly confused and over ninety years old.

We made a lot of memories and there was much laughter.

As it turns out, the ninety year olds required much more supervision and redirection than the babies. There were times when I'm sure my mother and father understood that these visitors were their grandchildren and great grandchildren but there were just as many times as I'm also equally certain they had absolutely no clue as to who any of these people or, for that matter me.

Due to a change in normal routine schedules or perhaps simply because their brain synapses are misfiring and short circuiting at a progressively rapid rate, in the days since our company left, my parents' behaviors, questions and perception have all been dramatically altered. In the past few days my mother has looked straight at me and asked me where "Susan" is and when is she coming home? I tell her that I am Susan to which she replies, "No, MY Susan. I know who you are but where is MY Susan???", she demands. I usually have a comeback for most things, but this exchange always leaves me wondering what to say?

Every single day for the past couple of weeks my mother has told me that it's time for them to "head back home" - i.e., West Virginia. She declares they've enjoyed their visit here but they've been away from their "home" way too long and they must get back and will probably be leaving "early in the morning". It is then that I have to be the bearer of bad news and explain that a) they have no home in West Virginia and they've been living in my home for fifteen years; b) they have no car and no valid driver's license and c) they're not going anywhere.

These statements are always met with the most disbelieving looks imaginable. It breaks my heart to see my Mom try and process the facts I lay out and it's so painful to watch her attempts to make sense of things that her mind must inform her can't possibly be true. She emotionally retreats and for a time the questions stop as she grapples with a reality that is completely foreign to her but is, in fact, the truth.

I try...oh God how I try...to swoop in with a diversion - ice cream, key lime pie, fresh coffee, photos of our family, bringing in Sailor and Cleo and hoping they'll do something cute (they almost always comply) which will take her attention away from the reality I've just dumped on her. I don't know who wants to run away from these moments more - my parents or me?

I take "the twins", aka my parents, to see Dr. Babiss tomorrow. I need to explain that these periods of confusion are happening more frequently and for longer periods of time and they are creating a great deal of anxiety for Mom and Dad and God knows I'm on sustained high alert, which can't be all that healthy for me. It's always worse as evening approaches. They seem to become more edgy and unsettled and my Dad has taken to wandering into the far reaches of the backyard. I'm also going to see if we might qualify for some in house Hospice assistance because I think we're most definitely at that point and frankly, every day I'm feeling just a little more overwhelmed and under-qualified.

I must confess I dread "doctor visit day". They will both swear they've never been to Wilmington Health Associates and while they'll be cordial to Dr. B, neither of them will remember her. It's been six months since our last visit and the mental deterioration is remarkable and profound.  I know there is a limit to what medications can do, but I am hoping she has just a few more tricks up her white coat sleeve and will help me find a way to get some extra hands on deck.