I Miss You Daddy...Thoughts of Saturday Mornings, Warm Coffee and Pipe Tobacco

Before dementia began eroding my parents' lives, and even after it began, every single Saturday Morning I would run downstairs, my Mom would be in the kitchen trying to figure out how to put cereal in the bowl but not wanting any help, and I would pour two large mugs of coffee with just a tad of cream, place it on a pewter serving tray that a coal mining executive had given my dad decades earlier, and slip into my parents bedroom. It was usually about 10:30 or 11:00 am, and my dad would be sound asleep. I'd put the tray down, run over to his desk and fill his favorite pipe with the proper amount of tobacco (I learned this from an early age), grab his lighter and then gently scoot in beside him and say, "hey, are you going to sleep all day?". After a few seconds he'd wake up, slowly open his eyes and I'd be holding his mug of coffee. A smile would light up his face. "Well, look at this - room service!! I love you, honey!". We'd settle in and I'd prop him up in bed with several pillows, by now either Sailor or Cleo would be on the bed along with us, and I'd hand my dad his pipe which he would promptly light and another smile would break out as he took possession of his coffee. "Mmmmmmm...now this is good.".

This became our Saturday and Sunday Morning ritual. After dad was awake enough to draw on his pipe and sip his coffee, he'd begin regaling me with tales...stories I'd heard countless times but with his Jimmy Stewart-esque delivery, I never ever got tired of hearing them. He'd tell me about the time his family moved from Itmann to Keyrock, and how his brothers, Otis and Dick were in charge of walking with their cow, "Old Pet", through the mountains to their new residence and how, when the rest of the family had settled into their new house for the night, his Mom and Dad were getting visibly concerned because Dick and Otis hadn't arrived yet. FINALLY, they arrived just as darkness was falling and the family was reunited. Or maybe he'd tell me about the times he had to "sit up all night with dead", a practice that was common back in the 1930's - 1950's in southern WV. "What in the world would you do, Daddy?", I'd ask every single time. "Well, we ate a LOT of food and situated our chairs around the coffin that was usually in the living room or dining room. We'd tell stories and try not to nod off!". I'd ask him, "why did people do that? what were they expecting to happen?". He'd laugh and say, "I don't know honey, it was just something we did...out of respect.". But he added, "oh sometimes we'd get to telling stories and laugh and have a good time!". I would smile because I knew if my Dad was in the middle of it, it had to be an entertaining evening.

Sometimes he'd tell me stories about his time in the US Navy...lots of funny stories and a few that would break my heart no matter how many times I heard them. Then, as I often did, we'd bring it back to the 1960's and I'd pull out a diary from, say, 1966 and the first time we vacationed at Wrightsville Beach and the little cottage we rented facing the Sound. He'd always vividly describe my eyes when I first saw the ocean - how mesmerized I was - "You LOVED it! Right away! You never wanted to leave!" and then, we'd marvel at how we lived just a few short miles from that spot and how much history had passed between us.

I now look back at those Saturday Mornings and I swear I can almost smell his pipe and see the steam coming up from those special cups of coffee. He'd throw his arm around me and always, always we finished up with a hug and he'd look me straight in the eye and say, "thank you for taking such good care of your old Mom and Dad". I drop tears when I remember those golden moments, but I smile as well.

When you're in the middle of such moments, on some level you know they won't last forever, but you can't and must not dwell too much on that because it will take away from the present, from the magic of it all. I never really allowed myself to consider that this wouldn't go on forever, even though intellectually I knew that it could not.

On this day before Father's Day, I look around my bedroom and I have a large bookcase next to the secretary that my parents bought around the same time I arrived on the scene. In the bookcase is every single volume of my Dad's diaries; forty-seven years of our shared lives are in those handwritten books. I haven't read all of them - but I look over at them and I feel my Daddy right here with me. Every word he wrote was deliberate and a tangible legacy of the lives we were blessed to share together.

My Dad was simply the quintessential perfect father - the guy you would surreptitiously connive with to get Mom to agree to something she wouldn't normally acquiesce. The man you could confidently share your dreams and also your deepest fears with in complete safety and without any fear of being made to feel silly or ridiculous. He was the comforting hug as I went through a divorce, the stalwart cheerleader when I acknowledged that it was time for me to get sober, the champion who always figured out a solution to a situation that perplexed me and the guy who made me believe I was so much more courageous, stronger and smarter than I would often feel. He became that voice that challenged me to step up to the plate, no matter what it was, and congratulate me when I did - whether it was finally leaping off a diving board when I was ten years old, or the night before major surgery when I was 34 years old or right before an interview for a job I really wanted. In my eyes, he was as close to the "perfect father" I could ever imagine - a fount of love, encouragement, understanding, humor and delicious mischief!!

Daddy, this is my second Father's Day without you and even though I miss you as much as I did in the hours after you left this earth, I'm so GRATEFUL for the stock of memories you left me with. I feel your direction, hear your voice and honestly am aware of your presence every single day and what an amazing gift that is!! I miss our Saturday Morning coffee klatches but my gosh, weren't we incredibly blessed to have so many of them?? I know that's what YOU'D say because you always spun grief into gratitude - and I'm learning to do the very same thing. Thank you for being the most incredible father anyone could ever hope to have and for loving and providing for our family through everything. I personally hope you're sipping a cup of hot coffee, drawing on your pipe packed "just right" with your favorite tobacco and holding my Mom's hand because if you are doing those things, then I know you are happy and content.

I love you, I love you, I love you...always and forever.

Eldercare - Trying to Maintain Some Sanity!!

This past weekend was one part sweetness, one part sadness and way too many parts straight out of rejected scripts from "The Twilight Zone". Talk about a crazy mixed bag. 

My head is still spinning. I have one patient who can't tell me what year it is, can't hear a word spoken from six inches away and refuses to wear anything that resembles a sound amplifier, but let me close an outside door on my way to run a ten minute errand and he magically gathers the ability to plan an escape.

My other patient is basically immobile. She ventures only from the lift chair in her bedroom to the dining room table with rare jaunts to the back patio. However, every single evening following supper, she begins haranguing my dad that it's time for them to go back home (West Virginia) and goes on to explain how she would rather live ANYWHERE else but here. She vacillates between tears and steely anger. She begs, she demands and when she slowly understands that she's not getting anywhere - she retreats bitterly into her chair. It's at these moments that I can appreciate why my Dad refuses to wear any device that might improve his hearing because he becomes frustrated trying to calm her down. My Dad harbors no desire whatsoever to head to WV and when he asks my Mom where she plans to stay on these visits, my Mom draws a blank as she thinks about all the friends and relatives she was close to and how 99% of them are dead. This does nothing to improve her mood.

This past Saturday was just a really bad circus. After making a super fast trip to pick up Stephanie and Evelyn and run in "The Olive Garden" for a quick bowl of soup. Before leaving the house I'd  arranged my parents' breakfast, newspaper, fruit, coffee and meds AND told them numerous times I had to duck out for about an hour but I would be RIGHT BACK. I came home an hour later to find my Dad demanding to know where in the world I had been and where are the keys to the doors and what is my phone number and why is the side and front doors locked and on and on and on and on...and on.  My mother was much more calm, but when I asked her if she remembered where I told her I was going, she had absolutely no idea and, oh by the way, she wanted to know how Stephanie was and when is she going to have that baby? (I get asked this question several times a day and by my Mom's account, Stephanie has been pregnant for eighteen months even though Evelyn frequently visits and is obviously Justin and Stephanie's baby...obvious to everyone but my Mom. 

After arriving home from my quick errand with Stephanie and Evelyn, I prepped and placed a lovely pot roast in the oven and a short time later, with Steph holding down the fort, I took the opportunity to run to the store and pick up a few essentials and of course, I took Cleo and Sailor with me - they need time out of this nuthouse has much as I do. When I returned home, Stephanie reported that I had barely backed out of the drive way when my parents magically emerged from their room - my mom heading straight for the kitchen, rifling through cabinets and searching for God knows what while my Dad was shaking the side and front doors, frustrated to find them locked and unaware that Stephanie was in the living room. When she walked over to my Dad, he asked her why the doors were locked and where was the key? She explained that I liked to keep them locked for safety and that she didn't have a key (she does, but she wisely pretended that she didn't). He was not happy with her answers. Meanwhile, in the kitchen, Mom told Stephanie that she was going to fix dinner!! (something she hasn't done in three plus years). Stephanie stepped up and told her that I had a roast in the oven and we were all going to have a really nice dinner in a short while. I don't think my Mom really believed her, so Mom just kept pilfering the cabinets. 

Thank God Stephanie was here. It was one of the rare occasions I could get through a store without the feeling of impending doom and fear of total residential destruction. The fact of the matter is that leaving my parents at home, unattended, is the equivalent of leaving two toddlers alone to fend for themselves. It's just not a good idea and it's a recipe for some sort of ghastly disaster. They are helpless. They have just enough cognition to get them into trouble i.e., "oh, a stove - it cooks things...let me turn these knobs and punch some of these buttons on the microwave!", and then mindlessly walking off. It's just not a smart move. 

It's maddening. The agitation and anxiety is becoming more pronounced in both of them and to tell you the truth, it's a little terrifying. I hate it - I hate it for them and I hate it for me.

Last night we had another epic episode of my Mom's "I want to go back to WV NOW!!!!!" show and she said so many things that broke my heart..."I hate it here. I would rather be ANYWHERE than here. I want to leave! Why do we have to stay here with that woman??".  Now, I know...I KNOW in my head that she is truly railing at her lack of ability, agility and she's living in some kind of fantasy where she can cook, clean and do all the millions of things she used to do with grace and ease, but last night, hearing her wails, after spending all day yesterday working in the backyard, I was exhausted, sunburned and just plain tired. I texted my daughter and a close friend - the contents of which I couldn't possibly repeat on this blog, but it did ease my tension and the replies I got back made me laugh, which is why I chose to grace them with my @#$%%^ texts in the first place. 

I love my parents, but wow this stage they're both in makes parenting teenagers look like a spring walk through Central Park. When my daughter called me yesterday evening, she was in the middle of putting tired and fussy twins to bed and had to think about getting dinner going, but listening to the sounds from her house reminded me that in spite of all the madness in this crazy house, life goes on and this will pass. She also wisely and graciously included me in yet another fitbit challenge and God knows I need someplace to spend the energy created by the frustration of getting through these days. 

My friend John sent me back texts that literally made me laugh out loud which is pretty awesome considering he has his own hands full with various irritations and his own set of parents to worry about. 

My dear Stephanie texted me to see how my day had gone and again, she's juggling a demanding job, motherhood and several furry animals to deal with at home. 

I guess that's the secret - we're truly all "in it" up to our eyeballs. Everyday brings a thousand fires to put out and ample opportunities to allow for many a "silent scream" and deep sense of wonder at all the beauty that spring shares with us - green grass, bright blossoms and highly chlorinated pools that begin to clear. Every single day is a combination of the craziness of Van Gogh and the sweet impressionism of Monet...and I guess you have to appreciate both...but try and focus on more on the Monet moments. It's so much more peaceful.

Today is Tuesday and it's the day Patty comes to give showers! Bless her heart and bless Lower Cape Fear Hospice. Just having these helpers in the house gives me infinite amounts of strength and many reasons for hope. 

Last night - my reserves were shot. Empty. Barren. Kaput. Today is a new day - the sun is shining, my hot tea is good and if I'm lucky, it will be at least another hour and a half until my patients get up. I'm looking to restore my peace and get in about 15,000 steps to give a good account of myself.

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.

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.