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?





04 June 2015

Helpers...Always Look for the Helpers


What timeless, sage advice Mrs. Rogers gave her son: "Look for the helpers". 

There's not a day goes by that I don't feel a few moments of fear, anxiety and dread. It's part of the territory of being the primary caregiver to my 90 and 91 year old parents who are in the progressively deepening stages of dementia. Most of the time I can duck and weave and slap those feelings away, much as I do the swarm of mosquitoes that attack as dusk approaches and I'm trying to find a few quiet minutes with a cup of tea on the patio swing. But sometimes, my aim is off and a stubborn, relentless wave of fear will take up temporary residence in my head.

There are many warm, rewarding and heart touching moments to be found taking care of my parents and some of it probably appears like a snapshot on a Hallmark card, but there are some experiences that deposit me on the fast train to crazy town. It is only because of my band of "helpers" that I haven't taken up full-time residency in Nuttersville.

Yesterday I decided to make a super fast trip to the drive thru of "Cookout" to order dinner for "the twins". After several days of working on the deck in heat indices of over 90 degrees and toting 4 X 4's that felt as if they weighed a ton, I was completely beat. Not that I didn't enjoy the diversion of being outside and helping to create something that improved the look and feel of my backyard (aka my primary source of escape), I was exhausted. I grabbed the dogs and made a mad dash for Monkey Junction. My daughter in law and one of my most coveted "helpers", was planning on dropping by with my granddaughter to hang out with me for a few hours. About five minutes after I left, Stephanie arrived and texted me that she was at my house and couldn't find Pops. Then she texted me back and said she did locate him and he was in the backyard, walking around the pool. 

Stephanie went out to him in an effort to corral him back into the house, teasing him that there was no "lifeguard" on duty and he needed to come inside. Of course he didn't listen and couldn't understand why he shouldn't be roaming wild and free around the perimeter of the pool. He paid no mind at all. When I got home, I saw him walking outside and ran to bring him in. I told him it wasn't very smart for him to be out there alone and in response he petulantly waved his hands and declared he was going to go to his room where he didn't have to listen to such nonsense. Fun fact - it's not a pretty sight when a 90 year old throws a temper tantrum, especially when he's your father and has basically been one of the most reliable figures throughout your entire life. 

Dementia is a mean son-of-a-bitch. 

I've been full-time caregiver to my parents for the last 3 years but when I think of the past two months, I can testify that there is no way on this earth I could be moving through these days without my retinue of helpers. 

Lower Cape Fear Hospice is first on my gratitude list. Because of them I now have Nurse Olga, CNA Patty and Social Worker Kim. I can't even begin to express how deeply grateful I am for their presence in our lives. I couldn't get through my "to do" list without their assistance, helpful guidance and vast resources and it is no small miracle that my parents were admitted to their care in April. I cried the day I signed the paperwork sealing their admissions. I'd cry even more if LCFH wasn't part of our daily life. Because of them I no longer have to figure out how to get my Mom and Dad to doctors' appointments, pick up prescriptions and address new concerns which arise almost daily. Hospice comes to us, bringing impeccable medical care, listening ears, copious compassion and lots of precious hugs. These "helpers" care for my parents in the same way that I do. With tenderness and compassion toward all three of us, LCFH has become an essential part of our lives and we are so much the better because of it. 

My whole existence right now involves keeping doors locked, medication schedules, meal planning and preparation, constant "elder-proofing" and putting out fires conjured by my parents' misfiring, diseased minds and wild imaginations. Last week my mother stuck 3 sewing needles into the power strip that her television and cable box are plugged into. She denies any culpability but the circumstantial evidence is damning. Two nights ago she swore she was leaving for a trip to West Virginia the next morning. I hid the keys.

I now jingle when I walk - I feel like Mrs. Hughes on "Downton Abbey" with keys hanging around my neck to fit every door lock, gate lock and the steel safe I keep their meds in. I sound like Santa Claus with all the jingling, but I'm not terribly jolly.

On top of the day to day stuff, I manage our quickly diminishing funds and usually my last thoughts before drifting off into a fitful sleep involve what will happen when we've run through our last dime and my mortgage company stops being fed. My thoughts turn to cancelling my health insurance - a hefty $520/month but I fear as soon as I do I'll be hit with a blown knee or visited by some devastating and expensive illness that will make $520 look like chump change, even though it's not chump change to me. 

I fear losing my home, my health and my modest possessions, but focusing too much on those things will ensure that I lose my sanity and while I can afford to lose a lot of things, I can't afford to lose my mind, so I don't linger too long on those thoughts.  I literally can't afford to do so.

Somehow, my daughter-in-law Stephanie knows when my emotional well is running dangerously low and just when I need it most, she sends a warm text, makes an unexpected visit and reassures me that she and Justin will always be there for me. She gives me hope, courage and strength and I would be so completely lost without her. Stephanie may be a petite young lady, but she's fierce and I'd trust her with my life. I'm so grateful for her support. What a stellar "helper" this young lady is to me. She provides me with practical solutions and she's always ready to roll up her sleeves and tackle the tough stuff, give me a break when I need it and hold my hand as I navigate these dizzying hairpin turns. 

Another helper that has appeared in my life is a wonderful lady named Kathy. She's a tiny dynamo of a woman who stays with my parents for a very affordable fee and allows me time to get things done that I wouldn't be able to do otherwise. I was so hesitant to reach out for such help but my daughter Katie had been lobbying me for months to get some relief. Our LCFH social worker, Kim, gently but firmly reminded me that taking a few hours off a week to take care of myself would enable me to be a better caregiver to my parents. I admit I was nervous and afraid the first time I left my parents with Kathy, but when I got back home three hours later, my emotional outlook improved dramatically and my parents genuinely enjoyed spending time with someone new who hadn't heard their stories and anecdotes. We were all refreshed and now I rely on Kathy's services to restore my strength and I welcome the opportunity to catch my breath, calm my thoughts and untangle the knots in my stomach.

Which brings me to another "helper". My buddy John is a man who literally can repair or build just about anything. Since I spend 99% of my time at home, my backyard is truly my onsite "happy place" and since I'm a person that would rather be outside than inside, it's pretty central to my mental health. My backyard sported a patio that was pretty much the ugliest thing imaginable. Since funds have been limited, the challenge of repairing and replacing the 12' X 26' eyesore seemed impossible and it would have been without the ingenuity and assistance of another "helper". John came up with a way to build a deck over the broken concrete by utilizing sales, discounts and some items from his own private material stock and donated hours of hard work and sweat to create a structure that far exceeded my expectations. I could never have afforded the masterpiece he built without his creativity and bargain finding acumen. He also very kindly took the time to teach me how to use a paddle bit, a chalk line, a hammer drill and invited me to join in, Knowing how much I love working outside, this whole deck building has provided a therapeutic diversion. When we wrapped it up I was sore, sunburned, sweaty and riding on a wave of endorphins, including the satisfaction of knowing that I had a hand in the construction. I'm so grateful.

One of the most incredible aspects of this whole care-giving experience is the magic of discovering so many people who step out of their own sane, unencumbered existences and step into my chaotic life bringing with them home-cooked meals, shoulders to lean on and hugs that literally sustain me. When I feel as if I'm running low or about to hit a wall, my next door neighbors Kathleen and Richard knock at the door with a fully prepared supper; unexpected flowers arrive from my friend Michel in Nantes, or my dear friend Jim who lives 1600 miles west of me in Amarillo, Texas builds an exquisitely crafted handmade wooden sailboat and it arrives on a rainy, grim morning at a moment when I'm wondering how in the world I'm going to make it through another day. 

I look around my room and see the candle and sea glass that my dear friend Karen sent me from Seattle, the sailboat pillow which arrived courtesy of my cousin in West Virginia, a coffee table book featuring beautiful sailboats from another friend Jeanne, who also lives in Washington State, a card from my favorite female sailor Bobbi who lives in Florida, a framed photograph of a frog hanging on for dear life from my dear pal Jayne in Charlotte, a nautical bracelet and daisy planter from an amazing cousin in Florida I have yet to meet in person - (I love you Linda!); on my nightstand is a wooden block with a Vivian Greene quote advising me that "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." which was a birthday gift from my daughter, Katie; sweet talismans that gently whisper, "you are not alone - you can do this - you will survive".

Don't misunderstand though - it's not just material gifts by a long shot - right now I covet the prayers and warm thoughts, heartfelt messages and healing energy sent on our behalf from friends, family and people I don't know but who message their concern - those prayers and messages are powerful and it's huge to consider so many people pulling for us! I can't possibly get through my life without those right now. They also whisper survival in my ear...

...and of course, I will. I'm determined. I will not be defeated. There are some days that I want to grab the dogs, jump in the car and take off. But there are far more moments where I am reminded of sweetness, a poignancy beyond description, the sound of my Dad telling my Mom, "I love you, I love you, I love you..." with so much feeling and emotion that I'm sure my heart will burst.

Last week, my friend Sharon and I spent 3 hours on the pier of The Oceanic. It was my second time leaving Mom and Dad with Kathy, and though we had long since finished our lunch, we sat there drinking tea, chatting, sometimes simply being quiet and looking out at the sea. At one point, I looked over toward the north end of the beach and was immediately transported back to June 1966, which was the very first time I met the ocean during a family vacation. Last week I stared at those relentless and familiar waves and for a few moments, with a clarity that almost frightened me, I saw my Daddy holding my hand, teaching me to ride the waves, showing me how to let them carry me to shore and in my mind I could literally taste the salt water spray as I remembered him saying, "Get ready for this one Suz - I've got you! Hold on - here comes a big one!  I won't let go...". I looked over at Sharon and shared my memory as salty tears dripped from my eyes. She smiled, handed me a tissue and listened. 

I have so many helpers to be grateful for, far more than I deserve, but I'm not in a position to turn a single one away because each one is a reminder of life,  the generosity of the human spirit and a bunch of people holding me up when it all gets to be so heavy and too much. I can't explain the timing and I'll be darned if I can understand how all of this cosmic Grace appears as it does. One thing I know for certain - I wouldn't be standing without the support and love of each person offering their hand and opening up their heart.

Thank you...so inadequate but deeply heartfelt. Thank you for propping me up. I'd be in a million crazy pieces without my angels.



20 May 2015

Disorientation Orientation: Who is Who and What is What?

We're sliding backward at an alarming rate. It feels like being in one of those "House of Mirrors" you find at carnivals - I think they're called "fun houses" but trust me, there is nothing "fun" going on in this house.

Our latest escapade began last Friday Morning. I was upstairs brushing my teeth and I mistakenly thought my parents were eating breakfast in the kitchen. My phone rang and it was my neighbor Pat, who lives across the street, telling me that my Dad was in the driveway and walking with a very unsteady gait and she was afraid he was going to fall. I FLEW down the stairs (toothpaste still in my mouth) and bolted out the side door to find my Dad kind of walking in circles and sporting a huge gash on his right forearm with blood dripping all over his shirt. I took his hand and lead him inside. He was terribly disoriented and unhappy to have been "caught". 

My Mom had been on the back deck leaning over the railing, trying to yell at him to come inside but of course he didn't hear her. He can't hear anything. He had no idea she was risking a fall trying to get his attention. Thank God my neighbor spotted him when she did. 

When I brought him inside and sat him down at the table, I tried to explain that he shouldn't have been outside. He became indignant. I brought his cereal bowl over to him and got my mom seated and then I made a cup of tea and went outside on the patio to calm myself down before addressing what had just happened. When I went back inside, I sat down at the table across from him and I tried to explain (loudly so he could hear) that it's very dangerous for him to be outside like that alone and then I pointed to his arm and told him it could have been much worse than a gash. Uncharacteristically my Dad threw down his spoon, looked at my Mom and in the harshest tone I've ever heard him use, he said, "I don't have to take this! I'm going back to my room.". 

He didn't go back to his room. I took a photo of his injury and texted our Lower Cape Fear Hospice nurse, Olga, who immediately texted me back that she would be over soon and check out the damage and take care of it. Thank God for hospice.

I gave my Dad something to calm him down and reduce his agitation and then I gently hugged him and told him that we were so upset because we love him so much and want to keep him safe. He softened a little and when Olga arrived about an hour later, he was much more civil...but completely unrepentant. When Olga asked him how this happened he said he had no idea. She carefully cleaned the wound, applied ointment and then wrapped it in several layers of gauze to protect it from further damage. After she left my Dad asked me who she was. I was taken aback because Olga had been here just one day before to give my parents a check up, but my Dad claimed he'd never seen her before in his life.

The rest of the weekend kind of went downhill from there. I had a lot of work to do outside and my friend John popped over to very generously donate his time and skills by pressure washing the deck around the pool and then my very long driveway. What a friend! Meanwhile I went back and forth between trying to help John and putting out skirmishes in the house. 

On Sunday, my parents started the day out calm but things got weird as the day progressed. When I was growing up, my Mom always talked about how she'd  wanted to be a nurse so she took Sunday to practice. She unwrapped the beautiful dressing Olga had applied not once, not twice and not even three times but a whopping FOUR TIMES. Fortunately Olga left me with some supplies because I was scheduled to change it Monday Morning but my Mom had taken the carefully covered dressing and applied toilet paper and scotch tape - right on the gash. You can imagine how much fun that was for my Dad as I had to take it off and redress the wound with sterile bandages. It was as if my Mom was on some kind of weird loop where each time I would rewrap his arm, she would wait an hour or so and then take it off and put more scotch tape and toilet paper over it. I was completely stymied. I couldn't make either of my parents understand and I would have done just as well talking to a brick wall. I wasn't making "contact". They were both incapable of understanding anything. 

While all this pandemonium was going on, my buddy John was finishing the driveway and allowed me to drive a real car and take it to Harris Teeter and grocery shop - we were out of everything - and it was the first time in months I had been able to walk rather than run through the aisles of a store and stock up on so many staples we needed. That was a real treat and did as much for my mental state as it did for restocking our larder. 

The past couple of days my Dad's mental state has shown further signs of deterioration. I never imagined seeing my Dad in this condition. My dad was, to me, invincible, sharp, witty, savvy and oh so wise. My Mom's downward spiral is no less stunning, but it's taken a less abrupt dive. Her memory is shot and she's frequently confused by just about everything, but my Dad's decline has been much more rapid and dramatic. 

I feel as if I'm on one of those really dizzying rides and I'm trying to catch the attention of the person operating the controls, screaming at him to please slow this thing down because it's making me sick. That's exactly what it feels like. Last Friday I placed padlocks on the gates of my privacy fence to prevent my Dad from slipping through the gate and gaining access to the driveway or street. On Sunday, I completely misplaced the keys to those locks and that's truly not like me. It actually scared me that I couldn't find the keys and I have scoured the house, the garage and the backyard and my only conclusion is that I have hid them somewhere to keep my Dad from finding them. I mean, this weekend alone I had to hide scotch tape, paper napkins and a whole host of other things, not to mention all medication in the house is kept in a locked safe so I guess I shouldn't be surprised that my brain is finally saying, "Whoa...wait a minute...you're pushing your luck!!". My friend John stopped by with his bolt cutters, removed the locks and installed new padlocks and wisely kept an extra key in case I forget where the keys to these new locks disappear. Thank God for friends!

I'm also extremely grateful to my neighbor Pat who alerted me to my Dad's outside activity which precipitated this weekend from hell. And I'm deeply grateful to my next door neighbors, Kathleen and Richard Canizaro, who graciously provided us with a wonderful dinner on Monday and are providing again tonight. I am surrounded by angels and I can't even express my gratitude for each one of them. I couldn't make it without all of these extra helping hands and caring hearts.

This latest downturn has left me exhausted and stressed. I wake each morning with a sense of foreboding; I find myself afraid to imagine what might happen next. I haven't been out of this house for more than two hours since last November when I flew to NYC to visit my daughter, son in law and my twin granddaughters. After awhile, all of this confinement will do a number on one's psyche. Chamomile tea, reducing the caffeine and getting more exercise (treadmill) are certainly helpful, but I need a few hours outside of the compound and that's something I'm working on trying to get in place. 

I adore my parents and I'm grateful that I have been able to take care of both of them, but right now this caregiver could use a walk on the beach, an unhurried lunch and just a few hours away from the heavy responsibility. Hopefully in the very near future, I can take a few little breaks to remind myself what the outside world looks like.


29 April 2015

Dear Becky - Happy 65th Birthday - Wish You Were Here

Dear Becky,

Happy birthday! I can't believe you'd be sixty-five years old today. You've been gone for forty-two years and wow have you missed a lot of stuff. I couldn't begin to bring you up-to-date, but brace yourself -  you're not only an aunt to my son and daughter, you're a great aunt to three incredible little girls who were born last year. Can you imagine your little sister is now a Nana? How crazy is that?

You would absolutely adore Katie and Justin - I gave Katie your middle name and it suits her. She's happily married to a very tall and kind man named John. They are parents to two absolutely adorable twin daughters who were born on Halloween last year. Katie and John named one of their daughters after our Mom which would please her to no end if she were able to remember it.

Justin married a lovely young lady named Stephanie. Justin has a heart that is roughly the size of Texas, which happens to be where he was born back in 1986. He and Stephanie are very proud parents to a little girl named Evelyn, who is lovely and sometimes she reminds me of your baby pictures. She was born on September 8th last year, just seven weeks before her NYC cousins. You could say 2014 was a very fertile year for our family. 

Our Dad and Mom are now 90 and 91 years old. Can you freaking believe that? They've had an amazing life and are still just as madly in love as they must have been when you were born in 1950. They still do everything together, including snagging dual admissions to Lower Cape Fear Hospice. I've been their full-time caregiver for the past three years and I gotta tell you, it's getting kind of tough right now. Our Mom refers to me as "that woman" a lot of the time and she gives me a run for my money, just as you probably remember me giving her a few gray hairs. Daddy still smokes a pipe, still loves ice cream and plots to escape the house when I leave to run to the store. Much of the time they're still graciously affable but suffice it to say, we're losing serious ground down here.

God I miss you. I'll be honest, given that you died when I was thirteen, there's so much I don't remember about you but there's a few things that I do and I cling to those. You were always the "girly girl" who loved dresses, never had a hair out of place and wore beautiful clothes. Me? I may be fifty-five but I'm still a tomboy, love to work outside and I'm usually disheveled, in sneakers or barefoot and I'm stalked twenty-four hours a day by a small Cairn-Terrier named Sailor and a huge Newfoundland mix named Cleo. I couldn't survive any of this without them. If you arranged for me to meet them at New Hanover Sheriff's Animal Services Unit, I must thank you. They're both "rescues" but they rescue me on a daily basis.

Oh, I cook now. Go figure. I never wanted to be a nurse, but it turns out I've become one. Remember how Mom used to take care of our Granny? Yeah, well, I'm doing that times two. It's a little crazy. Everything is a little crazy down here.

Mom tells me there's a "little girl" hiding in our house and sometimes I wonder if she's thinking of you? Your photos hang in our parents room and they look at them often. I heard my Mom telling one of her hospice nurses about you the other day - she said you were their only daughter and you died a really long time ago. I see Dad looking at old family photos on his computer and quite often he's looking at photos from the 1950's and you're in most of them. They still miss you terribly - we all do.

I'm not at all sure what it's like where you are, but it's a circus down here. Mom still has your hope chest and it's sitting in the foyer of my home and folded neatly inside are some of your things; your graduation robe and the bridesmaid dress you wore in your best friend Nancy Linkous' wedding. Mom still has some of your jewelry and I even managed to keep a couple of trinkets you gave me before you went away.  Years ago Mom made a shadowbox containing your class ring, your charm bracelet, your wedding announcement and a small pennant pin from Welch High School. Oh, and I still have your French Provincial end tables in my living room. I've refinished them and they've held up quite well. 

I gotta tell you, I look at at the sky several times a week, usually after an exasperating encounter with Mom or Dad, and I usually say something glib like, "Wow, you're missing all the fun sister!", or "Thanks a lot!", but really, I'm only teasing. If you're looking down you probably smile a lot. For the most part it's been a pretty good ride but the ride is getting bumpy and winding down and I'm scared a lot of the time. 

I think of you every single day but I become extra sentimental every year on your birthday and, of course, on May 25th. My whole life has been divided into two parts - pre May 25 1973 when everything in my world felt safe and happy and my biggest decisions involved whether to play kickball or go fishing and then post May 25 1973 when you died and nothing was ever the same. Even though I was only thirteen and I didn't understand much about death, having never been around it, it was pretty much the most jarring event of my life. Talk about turning our little world upside down! I know it wasn't your choice either but geesh...that was a really sucky time!

I hope things are well for you up there and obviously the concept of heaven implies that all is wonderful and happy and I genuinely hope it is. I can't tell you when to expect Mom and Dad, but I'm sure they'll be thrilled to see you and I know you'll show them the ropes and just an FYI - Mom's just as bossy as she ever was, but she's definitely softened with age and when she's not railing to go back to West Virginia, she's incredibly sweet and has mellowed a great deal. Daddy - well - I just hope heaven has a smoking section where pipes are allowed because if they don't, I'm not sure he'll stay. Otherwise, he hasn't changed much at all. He's sweet, kind and for the love of God I hope when he transitions to your world that his hearing is restored because he flat out refuses to wear a hearing aid. Other than that, he's a sweetheart. 

Oh, one more thing - thank you for sending Sharon my way. If ever there was an embodiment of you, it's in my best friend and non-biological "sister" Sharon Pate Batts. My gosh, she has been a great pinch hitter for you - she is supportive, kind, loving, compassionate and not a bit shy about straightening me out when I need it, much as I imagine you would do if you were here. I can't imagine getting through the last fourteen years without her and I thank God she's part of my life. Sometimes I'm sure you're literally directing her advice and actions. You would absolutely love her. I know I do.

Hey, if I never told you and, given that I was fairly young when you flew up, me being a newly minted teenager and all, I probably wasn't all that great at expressing how much I loved you but please know, you left a huge impact on my life and even though I can't remember a lot of the details about you, I know I loved you lots. I still do. Sometimes I really do feel you with me and I love those moments. I really hope I see you again (sorry, but not any time soon - I have granddaughters to spoil!), but the first thing I want to do is give you a big huge hug and the second thing I want to do is ask you what in the world were you thinking to leave me in this mess?? 

Becky, I miss you so much it hurts sometimes. Don't worry though, I'm doing the best I can and now that I have hospice, I have some great help with our Mom and Dad. I won't let any of us down. Promise.  I can't say I'm having a wonderful time, but I sure wish you were here.

All my love to you,

Susan




28 April 2015

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.