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.