Hospice - A Nickel For Your Thoughts...

Yesterday, my doorbell rang a few minutes after one o'clock and in walked lovely Olga. Olga is an RN with Lower Cape Fear Hospice and she breezes in with a warm smile, stylish shoes and an air of confidence. When I found out she was from Moscow and had visited St. Petersburg and we realized we shared a deep interest in Russian History and particularly the Romanav Dynasty, we became fast friends. 

Olga introduced herself to my Mom and Dad and proceeded to give them one of the most thorough going overs that would rival that of any physician. She checked blood pressures in BOTH arms, listened to the arterial blood flow in my Mom's neck and knew even before I told her that my mom had carotid artery disease. Olga was a splendid blend of professionalism and kindness and as I watched her examine my parents from head to toe, I felt such comfort having this woman in our home, particularly taking care of two folks who are very precious to me. 

As Olga was giving my Dad a thorough check up, the doorbell rang again and in walked Patty, who is our new Certified Nursing Assistant.  I watched as Olga and Patty exchanged hugs and then proceeded to work together and I realized we have an amazing team (or flock?) of angels. Patty explained she was here to meet my parents and wanted to know about things like personal care, showers, and examine the bathroom to see if everything was in order. When she decided our shower chair was nowhere close to her safety standards, she and Olga put in an order for a shower chair with arms and sturdy legs. 

While these women were discussing my parents' care, the door bell rang yet again and voila! It was a medical supply delivery man bringing in two shiny new rollator walkers, a bed side toilet and Olga and Patty quickly asked him if he had a shower chair on the truck. He did, in fact, but it wasn't the one they wanted so the new one was just delivered a few minutes ago and is quite impressive. 

After Olga's examinations, she and Patty took my parents into the living room with their new walkers and they taught my parents about the hand breaks, the folding seats and how to make full use of their new conveyances. I stepped back and watched and I was so deeply touched by their attitude of caring, compassion, humor and encouragement as they worked at converting my Dad to the idea that his cane was no longer adequate. My Mom was an easy and eager convert - she LOVED that her new walker rolled easily and had a seat to rest on. Dad took a little more convincing but from watching Olga, I could tell she was up to the challenge and knew her way around a stubborn customer.

After a few test "walks", Olga came over to me and told me that she was ordering some cough syrup for my Dad and some allergy medicine for my Mom. I asked her where I should pick these up and she smiled and said FedEx would be delivering them to me today and that the cost was covered by Medicare.

Pinch me.

Patty came over and told me we were now on her Tuesday and Thursday schedule for showers and that she would shave my Dad's ever growing beard. Thank God. He just isn't the beard type and the last time he tried it, he forgot that he had popped the stopper in the sink, left the water running and flooded the bathroom. 

Olga will be coming over again on Friday to do a check up and both women reassured me that if anything came up day or night, help was only a phone call away and they made sure I had the big purple magnet on the fridge with the 24/7 help line. 

No sooner had we said goodbye to Olga and Patty when the doorbell rang again and in walked Kim. Kim is our assigned social worker and she came bearing a different kind of assistance and information. Kim and I sat down at the kitchen table and her queries were for me - "How was I doing, what were my biggest concerns and how did I feel about everything?" 

I took a deep breath and I went on to explain that this was all very new, and that after going it alone for so long, it was going to take a little while to get used to the extra help, but it was a welcome adjustment to make. She was interested in the history of the relationship with my parents, how it came to be that they were living here and she wanted to know how I was coping with being "shut in" with my "shut ins". 

On that note, she told me she was putting in a request for hospice volunteers to come and spend some time with my parents for a few hours a week to give me a breather - a chance to go to the grocery store without feeling as if I was on a wild frenzy to collect everything in my cart before some buzzer rang at the end of twenty minutes. Or perhaps a couple of hours to go to the beach and walk and breathe and unwind. Oh my God how I've needed some "free time" - time away from home without worrying myself sick that people were falling, ashes were popping out of my dad's pipe setting something on fire or someone had left a door open and the dogs had taken off. I honestly can't remember the last time I've been able to be away from this house without all those worries. I also told her I couldn't remember the last time I was in the house alone - and upon further reflection, I realized it has been years. YEARS!!!! I don't even remember what that feels like. 

Kim and I chatted for about an hour and it was so REFRESHING to speak with someone who truly understood what I was talking about and how wickedly crazy the life of a 24/7 caregiver is. I didn't realize how dearly I needed to talk with someone who really "got it". It was a release for me. She gave me some additional information on caregiver resources and she popped in my parents room to introduce herself for a few minutes and then she turned back to me and explained she would be back to visit next week - and I am looking forward to it. It's a wonderful thing to be able to speak to another person who understands the landscape.

After all of our visits were finished, I indulged in a long, lovely phone chat with my dear friend Jayne. We had some catching up to do. Jayne herself went through all of this a year ago with her sister and just last week, she and her husband had to say goodbye to their dear sweet chocolate lab, Mocha. He had developed an age-related condition that progressed faster than anyone had expected and it was a very difficult week for Jayne and her husband. 

During the course of our phone conversation, my Dad came outside and beckoned me inside. He said he had to give me something and it was very important. I told him I would be right in as soon as I was finished with my phone call, but about ten minutes later he came looking for me again, asking me to come inside. I asked Jayne to hold on and followed him into this room. There, on his desk, he had several pennies, nickels, dimes and quarters - all grouped neatly in currency groups and he said, "Here, your Mom and I want you to have this - all of it." It must have been all of about $8 in change. I looked at a piece of paper he was holding in his trembling hand and saw that he was trying to figure out exactly how much money was there. 

"Here - there are fifteen nickels in this group - do you know how much that is?" I thought he was teasing me, but I played along and answered, "seventy five cents". 

"Really?", my Dad earnestly asked? "How much is a nickel worth?". I felt my knees buckle.

My dad who spent his career as an accountant and knew figures inside and out, no longer understood the monetary value of a nickel. As I realized he was sincere and it was very important to him to give me this change, as soon as he calculated just how much it was, my heart broke in a few deep places. I never imagined a day when my Dad wouldn't have the ability to calculate ANYTHING, much less wonder what a nickel was worth. 

After I finished my phone conversation with Jayne, I went back into my parents room and my Dad was still diligently counting pennies, nickels, dimes and quarters. He had a scrap piece of paper in his hand and there were calculations. I glanced down at the numbers he'd scrawled and all of the question marks he'd placed when he couldn't come up with the right answers. 

So many pieces are missing...fading away. The deficits are becoming so much more pronounced and I'm so grateful to have angels like Olga, Patty, Kim and Susan (the weekend RN) to steady all of us as the losses accumulate. 

It's such a long, painful goodbye.

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.

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.

...sigh...

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.

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.

You Can Lead a Horse to Water...But You Can't Make Him Wear a Hearing Aid

This has been an extremely frustrating week. I've been battling through bronchitis and seasonal allergies and I don't take kindly to inactivity. It's also been emotionally frustrating because my 90 and 91 year old parents, who I take care of full-time 24/7/365/ad infinitum (or so it seems), have been completely oblivious to my not feeling well. I freely admit that I have wished and dreamed of what it might be like to just go to bed for a few days and not have to remember that in three hours I have to give the afternoon meds, or that I've had to listen for the clatter of my Mom's walker as it heads for the kitchen and intercept any attempt by her to play with the coffeemaker, because she has no clue whatsoever how it works and cleaning up her attempts is not a fun way to spend a half hour. I've still had to ensure their dinners and snacks were made and spent a couple of hours each night hearing my Dad "check" each door a gazillion times to see if it's locked; they are all locked, but he makes several rounds in a circuitous route which never fails to cause an outbreak of barking as Sailor and Cleo wonder if someone is trying to come into the house. This usually doesn't stop until I go downstairs and physically interrupt my Dad's path and tell him he's checked everything enough and it's all locked up tighter than a drum. It's compulsive behavior and some evenings it drives me completely nuts. I mean raving crazy lunatic nuts. I shake my head. A lot.

Last Friday a package arrived that I'd been waiting for with a great deal of hope. My cousins, who take 24/7/365 care of their mother, my Dad's sister, told me about a hearing amplifier that had made a positive and dramatic difference in their mother's hearing. They suggested I check it out and see if my Dad would benefit from it, so I stopped by Radio Shack and inquired if they carried it. Turns out they did, though it was out of stock but could be ordered and delivered to my home. It was only a 39.95 purchase so even though I had my doubts, I felt it would be worth a try. I also picked up a good set of pair of ear buds and a head set so that he would have a choice.

I went downstairs, opened up the package, inserted the batteries and popped in the ear buds and loudly explained (his hearing is probably 95% shot) how this would enable him to hear better. He sat at his desk and I went about setting it up for him and inserted the ear buds in his ears. Then, I did some tests - standing across the room I asked him in a normal voice if he could hear me? "Yes, I hear you fine.".  Great! With the television broadcasting at a normal volume I asked if he could hear and understand the TV? "Oh yes, I hear it just fine.". I was really happy!! I thought we may have had a break through. 

About fifteen minutes later I went back into his room and found the hearing amplifier and the ear buds neatly placed on his desk. "Why did you take it off? Did it stop working?" I asked in the loud voice required to communicate with him. "No, it worked fine, but those ear things hurt."

I quickly pulled out the small, lightweight headset I'd purchased and said, "I've got you covered - try this.". I put the device back around his neck and placed the headphones gently over his head. "Can you hear me? Does that feel better?". "Yes, I can hear you just fine.". 

I can understand where the ear buds may have been annoying and uncomfortable so the headset was the ticket. Except that it wasn't. I went back into his room about an hour later and there again was the hearing amplifier and headset neatly stacked side by side. 

"What happened? Why aren't you wearing this?"  He shook his head and swept his hands in a horizontal side-to-side motion as one might make if asked if they would care for another helping of a dish at dinner; you know, the one that says, "I've had enough of this - please take the plate away.". 

So that was that. Exasperated, I walked over to him and asked, "You don't want to hear what's going on around you? Don't you miss that? Do you know how loudly we must speak in order for you to hear us?" He looked up at me as if to say, "Not my problem."

Sometimes it is your circus, and these are your monkeys.

I left the gadget where he placed it and hoped he might reconsider and try it again, but it never happened. And it never will happen. Ever. It was a $40 experiment and it was a worth a try, but I could have predicted the outcome and it made me angry, frustrated, sad and tired.  There were moments in the next few days when, after having to yell and wildly gesticulate for him to understand that he needed to get up and come to the dinner table, I would feel so mad that he refused to do something small which would make a big difference in our daily life. Yes, it made me fume. I kept it to myself - well, no I didn't. My closest friends and my daughter patiently allowed me to vent and curse and vent some more. Not to mention I was still battling bronchitis and not feeling my best which can make anyone's fuse a little shorter than usual. 

I wanted to scream, but that would do no good at all except to make my throat feel worse than it did. The thing of it is, there have been so few times in my entire life where I can honestly say I've been mad or even annoyed with my Dad because he's been a pretty wonderful father and I couldn't have imagined a better one both as a child and as an adult. Barbe Cook has nearly always been patient, kind, funny, amusingly wry and reasonable. My dad's decision to pass on wearing a device which would save our voices and allow him to hear everything around him is not reasonable, but it's his decision. Have you ever tried to argue with a deaf 90 year old? It's a pointless exercise and I promise, you're not going to win.

That's not to say that I haven't wished I could superglue those ear buds into his ear but it wouldn't work and he'd figure a way to remove them. I'm so tired of playing charades.

I really wrestled with this and it still annoys me, but I took a step back (and for you BB followers, I remembered page 417 in the AA BB 4th Edition which reminded me that "acceptance is the answer to all of my problems...") and I had to let go of it. That doesn't mean I have to like it or that's it's easy and there aren't moments that I resent the holy living crap out of it, but I can't, in all fairness, judge my Dad's decision and action in this one case to color his entire stellar performance as my father.

Grappling with my disappointment and yes, my anger, I made a conscious decision: I needed to remember that this was still the guy who spent hours treading water in the Holiday Inn Wrightsville Beach swimming pool when I was 12 years old, waiting for me to summon the courage to dive off the board; the man who made me believe I could pass college chemistry when I was staying up all night worrying myself sick that I would fail miserably; the man who took me to the airport numerous times assuring me I would have a great flight and that I would be fine flying across the Atlantic Ocean all by myself; the man who embraced me with so much love after hitting the lowest point in my life courtesy of my drinking and took me home and loved and supported my journey into sobriety, never once allowing me to feel that I could fail or that I would be anything but successful.

I went searching for a photograph taken at that Holiday Inn way back in 1972 - me standing beside my Dad after triumphantly diving off the board and popping up in the water right beside him, where he promised me he would be when I surfaced. I put that photo right beside my bed and I've looked at it several times since the day he declined to wear a hearing device.

When put into perspective, declining to use a hearing aid is a mere blip in an otherwise amazingly warm, loving and precious relationship. Oh yes, I still get miffed, pissed and profoundly irritated that I have to yell in order for him to know that his dinner is ready or that it's time for him to take his meds and I imagine I'll need to remind myself many more times that my dad's current actions aren't a true depiction of who he is. He's 90 years old. He's tired. His abilities are waning at an accelerated rate and it's got to be intensely painful and difficult to accept. It's hard for me to accept, too. I miss my Daddy. He's still here, but he's not really the Daddy I've known and enjoyed and derived so many benefits from through so many years. I've managed to reassure myself that when this is all over, this whole "hearing device debacle" will barely register in my memory.

Until then, we do the best we can, and we continue with our game of charades.

Reflections From the Sick Bed - I Remember Mama...

This has been a lousy week. Dr. Dewey Bridger warned me that I was cooking a batch of bronchitis but I was so sure I knew better and disregarded his good advice and, while I did get his prescriptions filled, I brought them home and left them unopened for four days. I was sure it was just a rising pollen count and seasonal allergies and I'd just save that antibiotic and super cough syrup for a future date when I was REALLY sick. I saw Dr. B on Thursday, 12 March. By Monday night 16 March, I discovered I was REALLY sick. I can just imagine him shaking his head and rolling his eyes - he's taken care of me for fifteen years and I'm sure he'd not find this surprising at all. I really wish I'd listened to him and these past four days, I've paid for it. Lesson learned? Probably not. 

I've spent most of this week pushing fluids, heating up canned soup and engaging in saline nasal rinses, gargles and lots of Vicks Vaporub - it's been a carnival ride. I didn't have time to come down with this mess because my daughter, son in law and twin granddaughters were scheduled to visit this week and I had carpets to steam, dust to chase, linens to wash and order to restore in high anticipation. When my fever set in Monday Night, I collapsed in bed, but it was a really clean bed and the upstairs of my home has never looked more put together. I decided to spend Tuesday resting since most of the work was taken care of and I was sure I'd be fit as a fiddle by their anticipated arrival on Friday. 

I woke up Wednesday and felt like I'd been knocked down by a wrecking ball (sans Miley Cyrus) but I had a hair appointment and sick or not, I had to have my mop modified so I would at least be able to see - my bangs had grown halfway down my face. I looked more like an Old English Sheepdog. 

On the way to the salon my daughter called to say their flight had been canceled and that she would text me when she knew more about the change in their schedule. Chilling, coughing and shivering through my haircut, I received a text that requested I call her after I was finished; plans had been changed - they could get a flight the next day but it would be routed through Boston, rather than the direct flight they had booked. A connecting flight through a city expecting yet another snowstorm with five month old twins. Ummmmmm, not an inviting prospect. My daughter and her husband decided to put the trip off until Easter week and while I was deeply disappointed at having to wait a few more days to see them, my body begged and pleaded with me to FINALLY get in bed. I finally gave in. My biggest fear was that I would convey my illness to the kids and due to some debris on a runway at JFK airport, I was given a reprieve to recover and I was so grateful because I want to be well and on top of my game when the kids arrive. 

Armed with a 750 ml water bottle, a huge glass of iced tea, a steaming mug of lemon/ginger tea, my cache of antibiotics and bottle of cough syrup, I wearily trudged up the stairs and took to my bed. Except for running downstairs to refill my liquids, make coffee for my parents and see that their meals were prepped (and a quick trip to Smithfields and CVS), I haven't really left my room. For me, that's pretty much unheard of because I can't stand being still but this bronchitis has (literally) sucked the air right out of me. 

I haven't been completely alone, thanks to the faithful loving companionship and concern of Sailor and Cleo. They haven't left my side or my bed. I'm grateful to both of them - once again my "rescue dogs" are rescuing me. 

I've managed to take care of the essentials in terms of taking care of my parents - they haven't missed any doses of meds, pots of coffee or meals, even though they've been eating takeout this past week - it's the best I could do. The funny thing is that each time my Mom has seen me, she says the same thing, "Are you catching a cold? You don't look well.". And for the 78th time I've reported that yes, I went to the doctor last week and I have bronchitis. She remembers this for maybe two minutes. Thursday Night I was summoned downstairs three different times because my Mom had told my Dad she hadn't seen me all day. She had seen me as I delivered meals, meds and checked on her when I'd run downstairs to replenish my fluids or heat up a can of soup, and when I'd walk into her room I'd remind her and then she'd laugh and say, "Oh yes, you, yes, I've seen you...", leaving me to wonder who in the heck she expected to see.

I Remember Mama. Really, I do. I mean, I know she's still here with me physically, but so much of her is already gone. 

I must confess, it's not fun being sick alone. My mother ruined me a long time ago. When I was growing up my mother turned illness into an occasion of care and nurturing and attention that made room service at the Ritz look lackluster and shabby. She'd prepare trays filled with homemade soup or her famous chicken and dumplings and she was always bringing in pots of hot tea. Mom would plump pillows, arrange blankets and run warm baths and to be honest, it was a lot of fun to be sick around Maxine Sturgill Cook. She was so amazing, creative and tireless. In fact, she was so good at it that in elementary school I would often fake illness and request an audience with the nurse so that my Mom would be summoned to come pick me up and lavish me with all of her great attention and treats. She eventually caught onto my scam, but I freely admit that I was never too sad to catch a cold or sore throat. Even if it meant a visit to the doctor, it was worth a little poking and prodding it if it meant I'd get my Mom's five star treatment. 

All of those memories flooded back to me this week and oh my goodness how they made me smile and brought no small measure of tears to my eyes. My Mom was great at a lot of things, but she excelled at spoiling both my Dad and me. 

"Are you catching a cold?" my Mom asked me so many times this week. Yeah Mom, I feel like crap. I need some of your hot soup, your perfect cups of tea, your hot oatmeal, your fried chicken, your mashed potatoes and hot rolls and could you arrange my bed like you used to and fluff the pillows as only you know how and if it's not too much trouble, could I have some ice cream and don't you think you should set up the vaporizer? God, I miss you Mom. I miss you so much it hurts but thank you for all those years you took such great care of me. While age has taken away your ability to do all those things you used to manage with such warmth and love, it can't tarnish my memories and how lucky am I to have those?

What I wouldn't do for another plate of your chicken and dumplings.

I love you, Mom.

Excuse Me, You Did What??????

I didn't mean to drag the suspense out, but I've been fighting a little bout with bronchitis and I've had a ton of work to do so today I landed in bed and I can reveal "the rest of the story" from my Dad's Friday Night's escapades.

Last Friday was a pretty full day with babysitting, running to the store for prescriptions and cooking a family dinner and by the end of it, I was ready to collapse in bed, which I did around 9:30 (early for me). I don't know if it was the infection cooking or just general exhaustion but I laid down and within minutes I was sound asleep. 

Around midnight, my Dad burst into my room with the full knowledge that he had no business climbing the stairs. Had that been the only offense, I would have not come undone. Oh, but there was more - Friday evening it began raining fairly hard so it wasn't a night for anyone...much less a 90 year old man who can't walk well...to take a stroll around the pool to the corner of the backyard BEHIND the shed where I had mentioned Sailor had escaped a few days previous. Ah, well, not to mention the ground was covered in slippery leaves, mud and perhaps there may have been a few snakes hiding about and oh yes, he was in his house slippers. He was sure Sailor had once again "escaped" and he was going to look for him.  Sailor? He was inside the living room apparently watching the man walking unsteadily with a cane who was looking for him, having better sense than to be traipsing around BEHIND the shed. OMG.

OMG OMG OMG OMG.

It took a few seconds for my brain to snap to and comprehend what he was telling me and he was so amused to imagine that Sailor had "outfoxed" him. Me? I wasn't amused at all. Let me count the ways I wasn't amused.

Had he fallen into the pool or behind the shed, had I found him missing by the time I woke up, I would have had no idea where to begin looking and most probably behind the building would have been my last guess.

If he hadn't returned and my Mom had the rare temerity to have eventually realize he was "missing", there is no way she could have climbed the stairs to report that Dad was AWOL. I was asleep and there's no way I could have heard her. 

Say I had finally found him, had he fallen, there's no doubt it would have resulted in a broken limb or two and I would have had one of the "elder twins" in the hospital and one of them here at home, unable to go anywhere (my mother can barely climb into a chair, much less a car). There are two of them and there is one of me. Can you imagine how that would have all worked out?

Now yes, you're probably thinking, I could "hire" someone to attend one of them when I was with the other but let me let you in on a secret. My savings is dwindling and before this whole thing finishes there's no doubt I will be forced to put my home on the market, depending on how long things go on. I pinch pretty much every single penny twice. Yes, my dad has a pension and while it's certainly respectable, taking care of two parents full-time is expensive. Ah yes, I'll just quickly rejoin the work force (something I would LOVE to do), but do you have any idea how much it would cost to have a full-time caregiver in this house? Ummmm, yeah, pretty expensive.

When I factored in all the risks he took with this stunt I was horrified. As I was calculating the potential disaster we averted (by the Grace of God), I heard him regaling my Mom with his exploits - "and it was pouring the rain and I kept looking and don't you know that little dog was inside the whole time???". He thought it a fabulous tale. I didn't share his view. As for Mom, well, she strings maybe two minutes of thoughts together on a good day and I heard her laughing as he was telling his tale. I could only shake my head.

I didn't pick that moment to discuss with him all of the reasons he shouldn't have gone outside on a wet, rainy night to look for a dog that wasn't missing. I couldn't. I knew my admonitions would come out harsh, unkind and I also knew that no matter what I said, I would have as much chance of making a brick wall understand as I would my Dad. 

I'm still appalled by it all. I'll find myself trying to consider how I could discuss his actions in a such a way he would understand the danger and then I realize it's completely hopeless and the only thing to come out of such an attempt would be for my throat to hurt more than it does right now from having to shout each word something like eight times until he would be able to hear me. 

I've worked overtime the past few days trying to shake off what happened - hoping to busy myself to the point I don't have to think about it, which is probably why I feel like crap right now. I'm taking today off, inasmuch as I can take any day off. I mean, there's still meds to dispense, coffee to make, meals to prep and moments where I have to practice parental redirection to avoid more mishaps but otherwise, I'm laying low. I'm exhausted but it's equal measures emotional and physical. 

My friend Cheryl often refers to what I do as "herding cats". She's been here and she "gets it". Let me tell you, there are moments when herding cats would be a far easier proposition than ensuring the safety and care of "elder twins". 

So there you have it - and that's the rest of the story. 

Oh, one other aside. I spent the past couple of days steaming the carpets upstairs in preparation for my daughter, son in law and twin granddaughters much anticipated visit later this week. On three separate occasions my mother has dispatched my Dad to deliver the message that they will "go to a hotel, because I'm having company and she's sure I'll need their room.". I kid you not. Each time I stop what I'm doing and go into their room and explain that it's Katie and her family who are coming and that we have ample room without displacing anyone. I did this twice yesterday and once the day before and she processes the information for maybe two minutes and then poof, it's gone. 

I'm just so tired.

"Don't Cry Because it's Over...

This past week, we lost a dear sweet family friend. Perl Tipper passed away Wednesday, 4 March. She was probably the last of my parents friends from the old days when they all worked together in Kopperston, West Virginia. Perl was a best friend to both my mother and father and they all worked together in the "company store". They knew her before she met the man she would marry and go onto raise six kids; one of those kids lives right here in Wilmington, North Carolina and is also a good friend - Christy Register. Perl came down several times a year to visit Christy and her family and we always looked forward to it because it meant Perl would visit us, too.

How to describe Perl - well, she was simply one of the most spry, engaging and witty women I've ever met in my life. My own history of "knowing" Perl is brief compared to my parents relationship with her, but oh how much better my life is for meeting her and tapping into her sparkling personality. 

She was tiny, extremely creative and talented and behaved much younger than her 92 years. I loved her hugs. Our last visit with her was this past June and I made a bit of a party out of it, fetching Smithfields chicken and lots of coffee and iced tea.  I sat on the patio after serving these three crazy "kids" and smiled as I listened to the reminiscing, the sharing of memories and the genuine laughter that wafted through the house. It was always a special time when Perl was in the house and I loved how these three good friends had renewed their connections through the 70 plus years they had known and loved each other.

When Perl visited us this past June, she asked me several times for a photograph and I didn't really understand why. In fact, when I didn't produce it, she had her daughter Christy text me to please send her a photo. I sent a snapshot that was taken at my daughter and son in law's rehearsal dinner in NYC. I didn't think much more about it. A few days later when Perl came over to join my parents for dinner, she presented me with a portrait she had painted - I was stunned. I had no inkling that this was why she wanted the photo. It turns out that as she was spending a couple of weeks visiting Christy, she wasn't one to sit idly by doing nothing - so she painted me! I can't tell you how precious this portrait is to me - how much I cherish it. 

I served my parents coffee this "morning" and by morning I mean 12:30 PM - since the time moved forward an hour overnight I knew they'd be extra late waking up. The sunshine was warm and I took my mother's hand and lead her out to the patio table where I had her coffee waiting. The sky was crystal blue and the trees look as if they are budding right before our eyes. Mom smiled in the warm sunshine and then looked at me and said, "Did you know my friend Perl? She died...". Over the course of the hour that we sat outside in the sunshine, my mother said this to me at least fifteen times. "Yes Mom, I know. We're going to miss her aren't we?". 

"She was my best friend. I knew her before she was married. We used to have so much fun working together."

I patted her hand and I tried to imagine what a huge loss this was to my parents because, quite frankly, she was one of the last of their old friends still alive. It must be deeply painful.

Last night as I was getting ready to make a speedy run for Food Lion, I overheard my Mom and Dad chatting in their room. "Barbe, what are we going to do about Christmas this year? I want to go home."

After repeating her question enough times that he actually heard it, he said, "Well, honey, I'll let you know in December - that's ten months away."

"I want to go home."

There was nothing I could pop in and say. I just listened. My mother's thoughts are scattered and she's not got a firm grasp of seasons or time, but it broke my heart. Right now I'm glad her attention span is brief and her thoughts are fleeting. It would be too sad to imagine otherwise. Everything she knew and all of the things she could do are long gone. Sometimes I wonder how they can possibly deal with it on those rare occasions of clarity. 

Perl visited us a week before Christmas 2013 and again, I served dinner for these three close friends. As I was getting ready to lay out the food I noticed they were all holding hands and my Dad was about to say grace, but what I noticed even more was that they continued to hold hands for several minutes after the prayer. 

Holding hands seems to be the very best way to get through these later years. In fact, when the Star News did a story on adult children taking care of aging parents in January 2014, this photo was on the front page of the Sunday Newspaper that day. It's so emblematic of their relationship.

My parents have always been warm, demonstrative people who never shied away from hugs and they've turned hand-holding into a natural part of their daily routine. I do the best that I can to make sure they are well fed, meds are dispensed as prescribed and I get their television back on several times a day because my mother LOVES to push buttons on the remote which frequently results in a blank screen. However, the most potent and essential secret to growing old, from my "up close and personal" vantage point, seems to be hand holding several times a day. There are so many lessons I learn, but this simple act of reaching out and holding onto each other is the most powerful mood elevator imaginable. Advil eases the arthritic pain, Lisinopril keeps the blood pressure stable and a small 50 mg dose of Zoloft may do something to stabilize the mood, but from where I stand, holding hands is powerful, preciously addictive and induces peace. The side effects of this act are quite amazing. I can't recommend it enough.

"Do you know my friend Perl Tipper?"

"Yes Mom, and we're all going to miss her so very much."

Godspeed Perl - thank you for sharing your life, your infectious laugh and your talent with us. We will always smile as we remember you with love and great affection. We will "cry because it's over, but we're all certainly smiling because YOU happened.

The Green Mile...

"And I think about all of us, walking our own 'Green Mile'...Sometimes, the 'Green Mile' seems so long..."

To my closest confidants, I sometimes admit to feeling extreme anxiety when I first wake up each morning. I'm afraid of what I'll find. My parents are 90 and 91 and dependent on me for almost everything.

When I was a little girl, I used to live in a state of extreme fear because my Mom and Dad were a good ten years older than my classmates parents. My Mom had me at the age of 35 which, isn't anything close to rare, but certainly qualified them as older than the average age of most of the other parents I knew. I would lie in bed at night, scared that my Mom and Dad would die much sooner than most of those other parents of my classmates and this was a particular fear after 1973, following the sudden, unexpected death of my 23 year old sister, Becky. Her death was followed less than two years later by my 83 year old grandmother who had lived with our family from the time I was in first grade. As far as I could tell, my family members were dropping like flies and my response to this was extreme fear and multiple panic attacks. I lived a very fearful existence, just waiting for someone else near and dear to me to suddenly disappear from my life.

Obviously, this didn't happen - my parents have, in fact, outlived many of my former classmates parents.

I no longer lie in bed and fear the inevitable in the same way I did when I was 10 or 12 or 14 years old, but I know how my own movie ends. Death is non-negotiable for all of us.

When I hear the first stirrings of my Mom's walker in the morning or the clop of my Dad's cane, I'm instantly relieved and then in the very next seconds I gear up for another episode of "Groundhog Day", because frankly, this is exactly what my life is like right now. Every day I answer the same questions about 40 times (no exaggeration) and sometimes I must identify myself. The weather becomes a particularly hot topic because in the span of an hour at the breakfast table, my Mom will ask me, even with the weather on the kitchen television being broadcast in real time, "what's the weather going to be today?". Sometimes I direct her attention to the television set which she'll watch eagerly for maybe 2 minutes and then, as soon as a commercial comes on, she asks me again, and again, and again "what's the weather going to be today? Is it going to snow?".

Cloudy, cold days are the worst. Not only does the pain my Mom experiences in her joints increase as the temperature slides down, but her whole affect is much less amiable and cheery.

Today is the first day of March. I heard my mother remark earlier today that it's "looking like fall". There is no real grasp of time and space for her. I'm not sure if that's true for my Dad because his almost total deafness and inability to carry on a conversation unbroken by "what did you say?" makes small talk an impossibility. I hate speaking in a loud voice and while I made a good go of it the first year and a half, I must confess I no longer do. It becomes very hard. That doesn't stop my Mom - from anywhere in this house one can hear her repeating the same question or comment up to 10 - 15 times, directed at my Dad. Most of the time whatever it is she's saying gets lost in the yelling and given her own abbreviated attention span, more often than not she forgets what her original point was when she began.

Schedules become essential and one tangles with them at a risk. If I serve dinner an hour or so early - say at 4 rather than 5:30 PM,  I'll often hear the click-clack of my mother's walker heading to the kitchen, asking me what we're having for dinner tonight? When I remind her that she ate just a short time earlier, she regards me with a quasi suspicious and embarrassed look. Not quite believing me and embarrassed that I might be right.

Last night I was watching "A River Runs Through It" after I served my parents dinner. About an hour after they had finished, I heard my mother tell (yell) for my Dad to be sure and check the doors. As I was sitting in the living room which is situated right next to their room, I heard my Dad's footsteps and waited for him to "peek" into the living room. I told him all the doors were locked and everything was safe. He gave me a nod and then proceeded to walk to the side door, the door leading to the garage and the sliding glass door in the dining room. I guess he didn't believe me - this is his routine. I smiled to myself and continued watching the movie.

A few minutes later, my Dad appeared again in the living room - "Your mother said she heard some people talking in here and wanted me to check.".

"Dad, it's the television - I'm watching a movie. No one else is here."

He nodded and headed back to their room with the message.

Not fifteen minutes later, my Dad reappeared in the doorway of the living room. "Your Mom keeps saying someone else is in here."

I pretty much gave up watching the movie by this point. I walked with him back to their room and told my mother personally that there is no one in the house but the three of us, as it is most days and nights. I told her I had been watching a movie.

Not ten minutes later, their bedroom door opened yet again - it was at this time I believe I looked over toward Cleo and said, "I'm going to stab my eye with a fork!!".

"Did you lock the doors?"

"Yes Dad - everything is locked up tight."

"Just checking. Your Mom wanted me to make sure," so again he makes the rounds until I seriously find myself unable to sit still and I walk up to him, gently put my hand in his and tell him he's done this already tonight. The house is locked up. No one else is the house. It's time for bed.

Meanwhile, I go outside and make about fifteen revolutions around the pool and I do this for two reasons. To shake off the irritation and the rote quality of this and every evening for the past couple of years, and to drive up the steps on my Fitbit. I accomplish both goals in about twenty minutes.

Every single day is both the same and different. The routine is the same but cognition and mental status seem to degrade just a little more. It's sort of like watching paint dry, but it makes me very sad. The intangible loss, the deficits, will break your heart.

I drink a lot of hot tea in the evenings. I build a fire in the wood stove almost every single night and I have an alarm set on my iPhone set for 7:45 PM so that I can listen to the BBC 4 Shipping Forecast. I pull up the maps on my computer and follow along as I listen to the forecast for the gales that are expected at Trafalgar and Biscay, and then I close my eyes and imagine myself bobbing in the small teak cabin aboard a sailboat, holding a mug of hot, steaming tea, tethered to some marina off the Isle of Man, wondering if I'll be able to cast off my lines and head back out to sea. No matter what I'm doing, I listen to that forecast and I visualize that scene. It's a mental image that gets me through another evening after another day of heavy repetition.

T-R-A-N-S-I-T-I-O-N

 T R A N S I T I O N (S)

I thought about starting a new blog about my adventures in caring for my 90 year old father and 91 year old Mom, but it didn't seem necessary. I have neglected my blog for a long time because I've been up to my eyeballs in taking care of "the twins", as I affectionately refer to them, but my posts on Facebook seem to be getting longer and so I feel it's time to get back to my blog.

In the beginning, this blog was about a 40 something year old woman who found sobriety on 11 January 2004, and learning how to live as a responsible, productive citizen. In the time since my blog began, my son and daughter have grown up, married wonderful spouses and made me a grandma in 2014 - adding 3 new beautiful grandbabies to our family - my son and daughter in law brought their beautiful little girl, Evelyn Sophia, into the world on 8 September 2014 and my daughter and son in law chimed in with identical twin daughters in late October. What blessings!!

In September 2012, it became necessary for me to stop working OUTSIDE my home and tend to my parents. Memories were failing and medications were screwed up and mother suddenly gave up cooking. One day, she just didn't do it anymore. My Dad is a great man, but he's useless in the kitchen, possessing no knowledge of how coffeemakers work, how bread becomes toast or how to scramble an egg.

Me? For most of my adult life I had about as much interest in cooking as I did underwater basket weaving. The kitchen was a place I breezed through to grab iced tea, a snack and frankly I took most of my meals out. In September 2012, I became chief cook and bottle washer - because it finally occurred to me that while Smithfields and Pizza Hut are convenient and tasty options, they aren't sustainable in the long-term. 

So my self-taught culinary education began. At first, it was a clumsy, messy and sometimes inedible affair but as with most things, applying time and tenacity and step by step instructions online, I learned how to cook. I must say I've given a pretty good account of myself and as of this writing, no one has incurred any gastrointestinal issues as a result of my culinary offerings (touch wood). In fact, there are some days I find great pleasure in creating dishes and I have learned to look upon this, and so many other things I've been conscripted to take on, as challenges in the "I dare you to try - let's see what you've got" kind of self motivation. 

I've learned a lot of lessons, gained new skills, been made humble and stumbled a few times - but the good news is that I've grown and stretched in more ways than I can count. I'm grateful, but it's not all sunshine and daisies. There are days when I'm sure I'm in my last moments of sanity. There are nights I hit the bed and I'm positive I won't be able to summon the physical and emotional strength to get back up again. Some days I feel as if my head will explode if I hear my dad retell the same stories he's been repeating for the past few years. When upcoming doctor's appointments arrive and I'm tasked with getting both of my parents to Wilmington Health for a visit with Dr. Babiss, I feel as if I'm herding cats - my Mom with her bulky walker and my Dad with his lack of coordination and failure to recognize the building we've visited so many times - asking me if he's ever met "that lady doctor" before. When it's time to dispense my parents' daily meds, my Dad always ALWAYS asks if he's ever taken that pill before and is it for him? He's only been taking that pill for about 20 years and yes, it's for him. We have that same conversation every single day. Every. Single. Day. Not a day goes by that my Dad doesn't see a speck of dust or a leaf on the floor that he doesn't bend over, pipe fully lit in his mouth, and dump hot ashes on whatever it is he's trying to pick up which isn't nearly as noticeable as the trail of sometimes red hot sparks that drop out of his pipe. I remind him daily, please don't bend over with your pipe in your mouth to which he instantly asks me "how come? I won't spill anything!". Ummmm, yeah you do and it's dangerous.

Watching the mental and physical deterioration of my parents is one of the most painful experiences I've ever been exposed to. It's so heart wrenching at times that it almost physically makes my heart feel as if it's breaking. My parents have been blessed - it wasn't until their late 80's that mental deficits began piling up but when those glitches began happening, they have accelerated so that as I write this in late February 2015, there are days that my Mom doesn't really know who I am. She knows my name is "Susan", but I'm not "her" Susan. She doesn't connect the dots. My Dad will look at his great granddaughter and when I ask him who she is and what her relationship is to him, he'll think for a couple of minutes and exclaim, "She's my grand niece!". This from a man who has devoted most of his retired life to genealogy research and has over 15,000 names on his Family Tree Maker. 

But there are those golden moments, and they never fail to catch me by surprise. I will hear my Dad loudly and lovingly exclaim to my Mom, bending close to her face as she sits in her recliner in their room, "I love you, I love you, I love you!!!!" or, "did you know you're prettier today than the day I asked you to marry me?". There are those moments when my Dad comes over to me and gives me a tender hug and says, "Your Mom and I sure do appreciate how you take care of these two old people...". Some mornings I'll walk in the kitchen to get their breakfast started and he will be ever so gently holding the chair for her and easing her into a sitting position with the greatest care imaginable. Some evenings I'll walk by their room and overhear my Dad patiently answer my Mom as she asks him, "When are we going home? How long have we been here? Do my parents know we're living together here? Can we go to West Virginia and see my brothers?". My Dad tenderly tries to bring her into the present, as much as his own memory has a grasp on it, and with kindness tries to give her comfort.

This is an emotional gig I find myself in the middle of and tears come with the territory, but I keep them private and out of view. As a 55 year old adult, I understand perfectly what is happening to my parents from a clinical standpoint, but as the only living offspring of these two, I dearly miss my parents a little more every single day. It sucks to see your two most amazing role models, a pair of the finest people you could ever hope to meet, who have guided you and been incredible examples of integrity and love, falter, fail to recognize you, grapple with the simplest of tasks like opening an e-mail, working a simple jigsaw puzzle or turning off a faucet rather than just walking away and leaving it running. 

This is what I want to use my blog for now. As difficult as so much of this is, and for as much as I sometimes imagine myself far removed from this situation, I know there will come a time when I will want to remember so many of the little things. I want to remind myself that we all did the very best that we could.

I'm not alone by any stretch of the imagination - there are a lot of us baby boomers out there engaged in the same role of caregiver. My situation may be a little unique in that I have no living siblings and I am a full-time caregiver to both parents. I'm outnumbered and on most days, I honestly surprise myself that I've managed another day of keeping it all together, but there are moments I feel desperately tired and I just want a few hours where I'm not in charge of anyone or anything. 

I do have full-time aides who are furry and go by the name of Cleo and Sailor - two rescue dogs that rescue me on a daily basis. They interject "life" into my daily grind. They demand that I go outside and throw a tennis ball and almost every day they insist that I take them on an errand, even if it's nothing more exciting than a trip to CVS or Smithfields or the grocery store. When they see me grab my Doc Martens, coat and car keys, they are front and center and, because I fear my parents may accidentally open an outside door leaving the dogs to take the opportunity to run like the wind, I feel safer taking them along with me on most every outing I make. They are wonderful companions and they also have proven themselves as fantastic therapy dogs to my parents. Their antics, affection and interaction never fail to add laughter and joy to my parents' lives. I couldn't get through my days without Cleo and Sailor. I will forever be in their debt.

While it's true I have no siblings, I do have an amazing posse of the most generous and steadfast friends one could ever hope to meet. My dear sweet Sharon leads the pack - this woman truly makes my life so much easier and is a constant reminder that I am not alone. Sharon was one of the first friends I made when I moved to Wilmington in August 2000. I knew absolutely no one but it didn't take me long to find her. She watched in horror during the early years of our friendship and pulled me out of many of dicey situation, courtesy of my serious relationship with red wine and when it was finally time for me to confront my drinking and admit that I had become powerless, she truly held my hand and helped me believe that I was stronger than I felt. In the years since I popped that cork back in the bottle, as I've grown and regained so much that my drinking took away, she has celebrated my victories and made me believe in myself. For those reasons alone, she's been one of the most pivotal humans in my life but as I've made my way through this journey of caregiving, she's been not only a staunch source of support, but she's done a great deal of the heavy lifting right there with me. In every way except blood, she IS my sister, along with our buddy Anne, and these two women keep me laughing, cry along with me when it's needed and their support gives me courage; when you're taking care of "eldertwins", you need all the courage and stamina you can get your hands on. These women, along with other angels in my life, deliver in spades. I can honestly say that while the mission of caregiving can be a lonely business, I have seldom, if ever, felt truly alone. My friends make that impossible for me and I'm so dearly grateful for each of them. 

Reaching out doesn't come naturally to most of us. However, it does become necessary. I want to be someone who learns to lend Grace as my own friends have so often and generously given Grace to me. Friends both local and far flung have showered me with so much kindness, packages of spirit lifters, cards, teas, sea glass, sailboat pillows, mugs with sayings that make me smile and feel loved, books that share advice for this passage, notes and cards that whisper comfort and joy. I'm so humbled by these gifts. I'm incredibly blessed by these angels who literally light my path and "walk me home". I can't even express how much this love means to me - a gentle envelope or box of strength that, regardless of what it contains, says, "Yes, you can keep going. You'll be fine.". There are so many wonderful people in this world and when you're in the trenches, you notice them as never before. 

I don't know how much I'll be updating this site, but I want to try and keep it current. If you're in the middle of parental caregiving - feel free to reach out to me. If you're not, feel free to reach out to me anyway. I'll do my best to reach back to you.