19 July 2015

Don't Look Back...Don't Look Ahead...Look At The Moment

Friday at 9:00 AM, I made the call to our Lower Cape Fear Hospice Social Worker, Kim. I asked her about the protocol for admitting my parents to respite care. I never imagined making that call. To be honest, I've often thought of myself as fairly indestructible and I couldn't dream of a scenario where I would feel the need for a five day break from taking care of my 91 year old Mom and my 90 year old dad, but this past week, I found myself impatient, snapping at things that wouldn't ordinarily irritate me and weary of never piecing together more than two hours of sleep at a time. I wouldn't say I was near a breaking point, but I will say that I recognized I was drifting a little too close for comfort. 
Kim is wonderful. Indeed each member of our dear sweet precious hospice team is nothing short of exceptional. That's not an exaggeration. I couldn't function right now without their skills, support and inestimable compassion. Seriously.

This weekend I am trying to keep our routine as "normal" as possible, quite a hat trick in what constitutes a most abnormal existence. I don't know that I'm performing terribly well. I don't think Mom and Dad remotely suspect that they're about to check in to LCFH in a few days, and I'm glad they don't. Trust me, I'm thinking about it enough for all of us. 

You know how in life there are those hairpin points - one second you feel spent and hopeless and then something happens and life makes a 180 degree turn toward the positive and there you go feeling all relieved and maybe even almost smug...and THEN...when you find out you're being granted something you clearly believe you want and need, reality sets in and here comes another 180 degree turn and those knots in your stomach that were just hours earlier untied, reconfigure themselves into different knots and there you are. 

And here I am. 

I can be so completely neurotic and it's not my best trait but I'm so darn accomplished at it. Sad, really. I'm spending this afternoon trying to imagine what my parents will say when I take them in for five days of in-house care. Will they be profoundly confused? Oh wait, they already are. I can kind of accept that - it's how they spend most every single waking moment of every day. But my main focus, my premier mission is to do everything in my power to ensure they're not afraid, that even through the discombobulated dementia haze, they'll still feel safe, loved and cherished...because they are all that and so much more.

I'm not a prototypical over-achiever, but when it comes to having two of the best parents ever created, I kind of outdid myself. Somehow I managed to spring up from these two incredible souls and I almost feel as if I should come with a tattooed disclaimer that releases them from any responsibility for all the faults I have and mistakes I've made. 

A few days ago I was frustrated, weary and pretty much at my wits' end from the rote nature of taking care of my Mom and Dad. I was wondering if my mental and physical stamina could handle what seems like an endless stream of these days; days where I'm asked about a hundred times a day what the weather is going to be like, if I know who those people are in a photograph, how old my granddaughter Evelyn is, and how much does Cleo weigh and where did I get Sailor? Where's Katie? Why is the door locked? How long are we going to stay here? We need to get back home to West Virginia, can you take us? 

Today I'm remembering stuff - how many times I've taken my parents to Wilmington Health to see Dr. Babiss, how small they both looked in the examination room, how often I remember seeing my Dad push the lawn mower across the yard, well into his 80's - pipe in his mouth, baseball cap on his head, steadily taking one step after another with a determined, steady gait, knocking out one perfectly measured row after another, meticulous and uniform. I'm thinking how many meals my Mom has prepared in my kitchen, a room I had very little use for or interest in. How many steaming, mouth watering pots of chicken and dumplings has she created in there? I never learned how she did it and it wouldn't matter if I had because my primitive offerings couldn't come close to matching her culinary skills.

Such a history we have. When I was a little girl in elementary school, I used to lay awake at night worried that my parents would die because they were often at least ten years older than most of my friends parents. My Mom was 36 years old when she had me and so many of my buddies had moms and dads who seemed so much younger than mine. I noticed this pretty early on and, being the worrying and anxious kid that I was, I feared they wouldn't survive until I was an adult, when they would attain the ripe old age of 54 (one year younger than I am right now). I wish I could go back and tell my 10 year old angst-ridden self that really, of all the things that might happen in my colorful future, this is the one thing I really didn't need to worry about. 

Such irony. I never gave a passing thought that my sister might die - she was young, seemed healthy and such a possibility never crossed my radar. When I was 13 years old, sure enough, my 23 year old sister died out of the blue. It was a horrible time and cranked up my already panic-ridden self into overdrive. It was a profound loss but at 13, I never thought to realize that when the time came, I'd be escorting my parents into super old age. I missed my sister terribly when she died but NOTHING compared to how I miss her presence now. 

So on this oppressively hot Sunday Afternoon, I find myself struggling to come up with a script. Depending on the availability of beds at Lower Cape Fear Hospice, my parents may be admitted for five days of respite care tomorrow. I won't know until I get the call in the morning. It may be Tuesday or it could be Wednesday because I don't just have one parent to admit, I have two. I'm told this will be a unique opportunity for LCFH - bringing in a husband and wife at close to the same level of frailty and dementia. I know they'll be well cared for and I have complete faith in everyone employed by our hospice. I'm still nervous.

I need a story-line, a script, some solid, believable but uncomplicated reason to give them as I suddenly interrupt their routine and introduce them to a temporary new one. I've rehearsed what I might tell them about a hundred times. I've even practiced on Sailor and Cleo, explaining how they are going to spend a few days in this beautiful facility because I have to (fill in the blanks). When I pitch my spiel to Sailor, he listens attentively and then licks my nose. Cleo responds with soulful brown eyes and a tilted head and then takes her massive paw and places it on my arm as a cue to rub her belly. I wonder how my parents will react?

I just don't know. I'm anxious. I have no idea what to expect. Katie suggested I tell them I'm taking them to camp - hey, it's summer, that's normal, right? My kids always loved going to NASA Space Camp and were excited and happy on the drive from Ft. Lauderdale to Cape Kennedy. 

The LCFH main campus is only about 3 1/2 miles from my house. Should we stop at Brusters for ice cream on the way there? 

I guess I'll find out soon enough how they respond and when the phone rings telling me to bring them in, I certainly hope my story feels more believable than it does now because, right now, I haven't settled on one yet. 

Later today, I need to surreptitiously sneak into their room and grab some of their clothes, underwear, toothbrushes, and bedroom slippers, a couple of pipes, a pouch of tobacco, a couple of lighters and pack their things in a suitcase. I was told to pack light - that should be a new experience for me - and I don't have to bring any of their medications because hospice has all of their medical information and they will supply all of that, which is a blessing. One less thing to worry about. 

Yesterday afternoon I walked into my parents' room and my Mom was moving some pieces of a jigsaw puzzle that she honestly has absolutely no idea how to put together, but still she tries. My dad was asleep on the bed taking one of his marathon naps. Mom looked up at me and asked, "How long are we going to stay here?". The question stopped me in my tracks. I told her I didn't really know, but she'd lived here for nearly fifteen years. She nodded her head and went back to mismatching puzzle pieces. 

This is going to be so strange. I can't wait to see how this story comes out. Prayers and good thoughts are welcomed. 

...to be continued.

17 July 2015

Respite Care: Exploring An "Interval of Relief"...

"A delay or cessation for a time, especially of anything distressing or trying; an interval of relief."

Last night after getting dinner prepared and served for my parents, I took the opportunity to give Cleo a much needed bath in the kiddie pool. You haven't lived until you've given a 110 pound Newfoundland mix a bath, especially one that doesn't care too much for water. Of course, I got in the kiddie pool with her. Having mowed the lawn a couple of hours earlier, I was in need of some cleaning up myself so I thought why not just have fun with it?

Cleo unhappily, but dutifully, submitted herself to a good lathering and rinse and I submitted myself to several showers as she shook herself multiple times during the process. It was all good clean fun...she emerged smelling better and I came out of it with her black fur sticking to every exposed part of my skin. 

While my parents were eating their dinner, I cracked open the patio door and asked them not to open the doors to the backyard because Cleo needed to dry and I didn't want her in the house until she did. Sailor was watching wistfully through the door, so after a five minute iced tea break I decided he could use a good washing, too. For Sailor, this is not a problem or a fight. I took him to the steps of the pool and without any fight or fuss, his bath was a mere ten minute process. So both dogs were laying on the patio and, again, I cracked open the kitchen/patio door to remind my parents to please not open the doors because the dogs were too wet to go inside. They nodded as if they understood these instructions but I still kept an eye on the doors because my parents collective attention span doesn't quite stretch to five minutes.

I then decided to hop in the pool and vacuum the bottom. The water felt warm and wonderful and I did a few flips to stretch out my back; nothing unwinds my body, mind and soul like being in the water and the time between 6 - 8:30 is a delicious time to be in the pool - the light is golden, the sun is less punishing and it's just a very zen time to be a mermaid. 

I got the pool vacuumed in short order and decided to swim some laps, execute some flips and just float on my back and look up at the emerging stars in a dusky, summer sky. 

About fifteen minutes after reminding my parents to please not open the doors leading to the back door, just like clock work, my Dad opened the door wide open and out he came to take up his position on the swing, no doubt because my Mom had sent him out there to "watch" me in the pool. As he stepped out, Sailor and Cleo made a fast retreat inside, still wet, and honestly, I pretty much lost it. 

I climbed the steps out of the pool, muttered a few expletives under my breath and shook my head. I grabbed my towel, my iPhone and extreme irritation (I'm being kind - the truth is I was completely pissed off), and I asked my dad why he did that after I'd asked him not to? He calmly looked at me as if he had no idea what I was talking about. "I just came out here to sit down and drink my coffee". I was livid but I held it together...just barely. I walked toward the door and he asked me where I was going? I told him I'd planned on enjoying a quiet swim alone but since that had obviously been interrupted, I was going inside. And with that, I went inside. Steaming, seething, dripping and frustrated.

I climbed the stairs, headed for the shower and made a very serious realization: I am in serious need of a break. I need a break from being a pharmacist, nurse, chief (and only) cook, house cleaner, lawn keeper, remote control repair-person, laundress and the few thousand other jobs I do in the course of a week.

Lower Cape Fear Hospice most kindly offers a five day respite care option for in home caregivers every quarter and we are into our second quarter of hospice care. I've resisted the notion of taking advantage of this incredible opportunity because I've made the mistake of thinking I didn't need it; that I could handle this just fine and there was no reason to relocate my parents into a facility for five days in order to take some kind of silly break.

I was wrong. 

I'll be honest, I'm scared and nervous and stressed out at the very notion of taking this step but I'm even more scared, nervous and stressed out by not taking it. I'm beat, tired and spent. 

Today I'm going to call our wonderful Social Worker Kim, and see what I need to do to get the wheels in motion to make this happen. I'm not sure what all is involved but I feel secure that LCFH will guide me in the right direction and we'll all survive this new experience.

My close friends and a few family members have been encouraging me to do this but, of course, I've resisted and thrown out many excuses as to why I don't really need it but after last night, all I could think of was a million reasons why I do. 

I'll post more after discussing this with Kim. The fact that I've actually arrived at this conclusion is a huge step for me. Feel free to send me some good thoughts. 

In the meantime, after my shower last night I ran down to the garage, fired up my reciprocating saw and fashioned two 34 inch wide boards which I can now install on the track of the patio doors which will prevent anyone from opening the back doors when I'm outside in the evenings looking for a little peace in pool. Elder-proofing is a continuous, never-ending process. At least tonight, I can swim in peace for an hour or so. 

I need an "interval of relief". Here's hoping.

16 July 2015

...These Are The Days Of Our Lives

I've been busy in a kind of "time warp" situation. I've started blog entries at least twenty times and then something has happened and scrambled my brain to the point I haven't been sure if I'm believing what I'm seeing or seeing what I'm believing. Sound confusing? Welcome to my world.

The past few days I've been doing my 24/7 care-giving gig to both of my parents and then retreating during "quiet" moments up to my room where I have been intensely engaged in about twenty different "words with friends" games while streaming "The Andy Griffith Show" on Netflix and trying my level best to forget what I am hyper-actively engaged in. It works, somewhat, and for the few moments of sanity it affords me, I'm deeply grateful.

In the past month, my parents have lost so much cognitive ground that I know I probably sport a "deer in the headlights" expression on  my face because even though I'm witnessing every terrifying intonation of Mom and Dad's profound dementia, it still startles the living heck out of me.

This is where I must first and foremost tip my hat off to Lower Cape Fear Hospice because if our team of angels were not holding my hand during this phase of deterioration, I wouldn't be able to function or face any of this. Our incredible nurse Olga, CNA's Patti and Teresa and my own personal angel, Social Worker Kim, help me find the courage to face each new day and whatever terrors it may hold. They dole out showers, shaves, physical check ups and active listening with a compassion that never fails to give me more courage for whatever the next day holds.

I'm not going to even pretend I'm not exhausted because I am. Physically, mentally and emotionally. Summer has always been my most favorite time of year but this summer will go down has one of the most challenging seasons of my life. I have to work really hard to summon the joy that summer has always afforded me because watching two of my favorite people fade away right before my eyes is heartbreaking. I don't know how I'll look back on this period in my life, but for right now, it's painful.

And yet, there have been some sparkling moments that have shown up unexpectedly, completely out of the darkness. My dad has always been a big fan of Chrysler Minivans. With all due respect to Chrysler and minivans, I've never been a fan. When we finally convinced my dad a few years ago to give up his car keys, he titled his 2006 minivan, with all of 30,000 miles on it, over to me. I didn't celebrate because it was never a car I cared to own but for insurance purposes, I titled it in my name and tried to pretend I was driving something else. This past May my buddy John, sensing my disdain for the white mess, suggested I drive a car he had restored to practically "show room" new. It's a 2001 Lincoln Town Car and yes, it's HUGE, but it drives like a dream and the back seat comfortably accommodates my 110 pound Newfoundland mix Cleo and the front seat is a favorite spot for the more diminutive Cairn Terrier mix Sailor. To be honest, nervous driver that I am, I feel safer navigating a big car than a small one and so I started driving the Lincoln and felt quite comfortable and safe on the wild, tourist filled roads of Wilmington. I must admit the leather seats, impressive cooling system and bells and whistles are a lot more inviting than the minivan and I actually enjoy driving around in it. Hey, I could always be an Uber driver in this car because it's a lot like the transportation I take from La Guardia into Manhattan when I visit Katie, John and those adorable twins.

After a few weeks, John made me a proposition; he offered to trade me the Lincoln for the minivan - straight up, declaring he could strip the van and use it as a work vehicle and I would no longer have to look at it in my driveway. I was stunned and excited...and then, as we got closer to making the trade official, I was blindsided by a wave of guilt and sentimentality. Every time I would go to clean out my belongings from the van, I'd feel a wave of imagined retribution, as if I was somehow betraying my Dad by removing the last vehicle he would ever drive. I'd rifle around the compartments of the van and see the legal pad he faithfully kept of the mileage, gas refills, trips he made and recorded in his shaky handwriting, run across his ziplock bag of pipe cleaners, toothpicks and matches and before I could go any further, I felt wracked with guilt. The miserable minivan may have been titled in my name, but I could feel my dad's presence all over it. I became static - unable to move forward with the trade. John most kindly allowed my delays at heading over to the DMV because I believe he sensed I was involved in some kind of internal tug of war. He didn't push me and for that I'm grateful.

One evening, about three weeks ago, I caught my Dad looking over the padlocked back gate and when I walked over to him, I asked him what he was doing?

"Who does that car belong to?", he asked. I explained it was our friend John's and that he'd left it here for me to test drive. I then asked him if he'd like to see inside of it, to which he eagerly agreed.

I took my Dad's hand and walked him through to the house and unlocked the side door and slowly helped him into the passenger side of the Lincoln.

"Wow, this is fancy. This is a really nice car!"

I asked him if he'd like to take a little ride in it and he said yes. I belted him in and backed out of the driveway and drove around a few streets in the neighborhood. He "ooohhhhhed" and "ahhhhhhed" over the smooth ride, the thick comfortable seats and unblemished interior. "This is a really nice car, Susan! And he's letting you drive this for free?".

I screwed up my courage and said, "Daddy, John said he'd like to trade me this car for the minivan. What do you think about that?"

Dad studied for a minute and then asked, "How much would you need to pay him extra?" I told him John wanted to do a straight up trade - wouldn't cost me a dime. Dad was incredulous. "You mean you wouldn't have to pay anything extra?" I assured him that I wouldn't - it would just be a matter of paperwork and changing insurance.  He was quiet for a few seconds and then leaned back and said, "Well, you better go call him right now and tell him YES before he changes his mind!" I asked him again if he thought this was a good deal and he said, "Oh yes, call him right now and tell him yes!".

I can't even tell you what my dad's response meant to me. It was like some really heavy chains broke and I suddenly felt free to get rid of that stupid minivan. In fact, I didn't truly realize how encumbered I'd felt until he said those words.

We pulled back into the driveway, and I helped Dad out of the car and walked with him around the Lincoln, raised the hood and showed him the motor, not that either one of us could truly identify many of the parts, but it looked impressive. I had him sit in the backseat which is a lot like sitting on a huge comfy leather sofa and he just shook his head and said, "And John wants to make an even trade?". I reconfirmed that he did. "Go call that man and tell him yes!".

I walked daddy back in the house and he went in his room and I heard him regale my Mom with his little adventure in that nice big car. She had no idea we'd left the driveway but she doesn't tend to move out of her chair after dinner so I knew we would be safe taking a quick tour. Twenty minutes later, he was still bragging on his ride and I had to smile as I heard him tell her how nice it was.

I climbed the stairs and called my buddy John and told him I would meet him at the DMV any day the next week to make it official. I then explained how I'd become paralyzed by getting rid of the last car my dad would ever drive and apologized for taking so long to complete the trade. As usual, John was understanding and kind and said, "Not a problem at all. Glad it worked out.". What a friend.

I know that might sound crazy, such a love/hate relationship with my dad's car and finding it hard to let go, but the truth is that in the last few months I've lost so much of the true essence of my Mom and Dad that I couldn't control, that when it came time to proactively make a change, I found myself stumbling and dragging my feet.

Letting go is a tough business. In these long, hot days of the summer of 2015, I'm losing so much that is preciously near and dear to me. Most days I don't believe my parents really know that I'm their daughter. Oh, they are polite and affable, and they know I'm the source of their meals, meds and I'm definitely the "go to" person who straightens out the television when my Mom pushes the wrong button on the remote some twenty times a day, and the expert on dialing the phone on the rare occasions my dad tries to make a call to his sister in West Virginia, but as for truly knowing I'm their daughter, I don't honestly believe they have a clue. I'm "Susan", but not their "Susan". I think that's because their "Susan" is something like 8 years old and engages in dangerous pursuits such as swimming in the pool past dusk and walking outside with the dogs in the backyard after dark. My Mom has identified me as her coworker, good friend, neighbor and nice lady but as for believing I'm their kid, no way.

It is what it is. I'm grateful for what I've had and those angels among us (great friends, family and of course Lower Cape Fear Hospice) who are helping all three of us as we make our way through this huge transition.

One of the biggest challenges is fear. Ambiguity. I know what the end game will be, but it's stressful to wonder how that will play out and what it will look like. Those thoughts can really mess with your head and it's a lot of work keeping fear at bay. I'll be honest, I don't really want to see anyone die - who does? The expectation of the imminence of death casts a thick, smothering pall but I do my best to swat it away. Some days I'm better at it than other days and again, remembering to take it all one day at a time is the best defense.

There's a gazillion lessons in this situation and I'm sure a lot of them will not be known until this is finished. Until then...I take advantage of every chance I get to grab Cleo and Sailor, crank up the Lincoln, turn on the iPod to the B-52's "Love Shack" and smile as we run what I call "micro-errands" if for no other reason to grab an iced tea at Smithfields.

And then, there's this. As sad as it is to watch two people you love lose their abilities, faculties and all that goes with it, I'm grateful that I am allowed the privilege of watching my ten and a half month old granddaughter, Evelyn, learn how to feed herself, grab for my face, pull my hair and burrow her head into my arms when she's ready for a nap. How amazing is that? I'm living in the middle of a crazy circle of life. I'm the Nana to three incredibly precious granddaughters all under the age of one who are learning their way through the first year of their lives and it's just beyond imaginable. As nuts as my present circumstances sometimes are, I have to remind myself that life is springing up all around me in these three precious gifts. Evelyn dazzles me, charms me and makes me laugh often. My hearts sometimes feels as if it will burst from the miracle that she is. I check Instagram several times a day for photos of my NYC granddaughters and before I go to sleep at night, I look at those images and no matter what else might have gone down in my day, I am entranced by these new lives. All three little girls are coming into their own. 

I had to giggle as I woke up this morning - after spending the day with Evelyn yesterday, she'd left her little toy "Minion" in my bed so this morning I woke up to the "ha ha" of this tiny toy...an amusing reminder that life DOES go on and goes on well. 

How can I not feel blessed?