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.

"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.

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.