Hospice - A Nickel For Your Thoughts...

Yesterday, my doorbell rang a few minutes after one o'clock and in walked lovely Olga. Olga is an RN with Lower Cape Fear Hospice and she breezes in with a warm smile, stylish shoes and an air of confidence. When I found out she was from Moscow and had visited St. Petersburg and we realized we shared a deep interest in Russian History and particularly the Romanav Dynasty, we became fast friends. 

Olga introduced herself to my Mom and Dad and proceeded to give them one of the most thorough going overs that would rival that of any physician. She checked blood pressures in BOTH arms, listened to the arterial blood flow in my Mom's neck and knew even before I told her that my mom had carotid artery disease. Olga was a splendid blend of professionalism and kindness and as I watched her examine my parents from head to toe, I felt such comfort having this woman in our home, particularly taking care of two folks who are very precious to me. 

As Olga was giving my Dad a thorough check up, the doorbell rang again and in walked Patty, who is our new Certified Nursing Assistant.  I watched as Olga and Patty exchanged hugs and then proceeded to work together and I realized we have an amazing team (or flock?) of angels. Patty explained she was here to meet my parents and wanted to know about things like personal care, showers, and examine the bathroom to see if everything was in order. When she decided our shower chair was nowhere close to her safety standards, she and Olga put in an order for a shower chair with arms and sturdy legs. 

While these women were discussing my parents' care, the door bell rang yet again and voila! It was a medical supply delivery man bringing in two shiny new rollator walkers, a bed side toilet and Olga and Patty quickly asked him if he had a shower chair on the truck. He did, in fact, but it wasn't the one they wanted so the new one was just delivered a few minutes ago and is quite impressive. 

After Olga's examinations, she and Patty took my parents into the living room with their new walkers and they taught my parents about the hand breaks, the folding seats and how to make full use of their new conveyances. I stepped back and watched and I was so deeply touched by their attitude of caring, compassion, humor and encouragement as they worked at converting my Dad to the idea that his cane was no longer adequate. My Mom was an easy and eager convert - she LOVED that her new walker rolled easily and had a seat to rest on. Dad took a little more convincing but from watching Olga, I could tell she was up to the challenge and knew her way around a stubborn customer.

After a few test "walks", Olga came over to me and told me that she was ordering some cough syrup for my Dad and some allergy medicine for my Mom. I asked her where I should pick these up and she smiled and said FedEx would be delivering them to me today and that the cost was covered by Medicare.

Pinch me.

Patty came over and told me we were now on her Tuesday and Thursday schedule for showers and that she would shave my Dad's ever growing beard. Thank God. He just isn't the beard type and the last time he tried it, he forgot that he had popped the stopper in the sink, left the water running and flooded the bathroom. 

Olga will be coming over again on Friday to do a check up and both women reassured me that if anything came up day or night, help was only a phone call away and they made sure I had the big purple magnet on the fridge with the 24/7 help line. 

No sooner had we said goodbye to Olga and Patty when the doorbell rang again and in walked Kim. Kim is our assigned social worker and she came bearing a different kind of assistance and information. Kim and I sat down at the kitchen table and her queries were for me - "How was I doing, what were my biggest concerns and how did I feel about everything?" 

I took a deep breath and I went on to explain that this was all very new, and that after going it alone for so long, it was going to take a little while to get used to the extra help, but it was a welcome adjustment to make. She was interested in the history of the relationship with my parents, how it came to be that they were living here and she wanted to know how I was coping with being "shut in" with my "shut ins". 

On that note, she told me she was putting in a request for hospice volunteers to come and spend some time with my parents for a few hours a week to give me a breather - a chance to go to the grocery store without feeling as if I was on a wild frenzy to collect everything in my cart before some buzzer rang at the end of twenty minutes. Or perhaps a couple of hours to go to the beach and walk and breathe and unwind. Oh my God how I've needed some "free time" - time away from home without worrying myself sick that people were falling, ashes were popping out of my dad's pipe setting something on fire or someone had left a door open and the dogs had taken off. I honestly can't remember the last time I've been able to be away from this house without all those worries. I also told her I couldn't remember the last time I was in the house alone - and upon further reflection, I realized it has been years. YEARS!!!! I don't even remember what that feels like. 

Kim and I chatted for about an hour and it was so REFRESHING to speak with someone who truly understood what I was talking about and how wickedly crazy the life of a 24/7 caregiver is. I didn't realize how dearly I needed to talk with someone who really "got it". It was a release for me. She gave me some additional information on caregiver resources and she popped in my parents room to introduce herself for a few minutes and then she turned back to me and explained she would be back to visit next week - and I am looking forward to it. It's a wonderful thing to be able to speak to another person who understands the landscape.

After all of our visits were finished, I indulged in a long, lovely phone chat with my dear friend Jayne. We had some catching up to do. Jayne herself went through all of this a year ago with her sister and just last week, she and her husband had to say goodbye to their dear sweet chocolate lab, Mocha. He had developed an age-related condition that progressed faster than anyone had expected and it was a very difficult week for Jayne and her husband. 

During the course of our phone conversation, my Dad came outside and beckoned me inside. He said he had to give me something and it was very important. I told him I would be right in as soon as I was finished with my phone call, but about ten minutes later he came looking for me again, asking me to come inside. I asked Jayne to hold on and followed him into this room. There, on his desk, he had several pennies, nickels, dimes and quarters - all grouped neatly in currency groups and he said, "Here, your Mom and I want you to have this - all of it." It must have been all of about $8 in change. I looked at a piece of paper he was holding in his trembling hand and saw that he was trying to figure out exactly how much money was there. 

"Here - there are fifteen nickels in this group - do you know how much that is?" I thought he was teasing me, but I played along and answered, "seventy five cents". 

"Really?", my Dad earnestly asked? "How much is a nickel worth?". I felt my knees buckle.

My dad who spent his career as an accountant and knew figures inside and out, no longer understood the monetary value of a nickel. As I realized he was sincere and it was very important to him to give me this change, as soon as he calculated just how much it was, my heart broke in a few deep places. I never imagined a day when my Dad wouldn't have the ability to calculate ANYTHING, much less wonder what a nickel was worth. 

After I finished my phone conversation with Jayne, I went back into my parents room and my Dad was still diligently counting pennies, nickels, dimes and quarters. He had a scrap piece of paper in his hand and there were calculations. I glanced down at the numbers he'd scrawled and all of the question marks he'd placed when he couldn't come up with the right answers. 

So many pieces are missing...fading away. The deficits are becoming so much more pronounced and I'm so grateful to have angels like Olga, Patty, Kim and Susan (the weekend RN) to steady all of us as the losses accumulate. 

It's such a long, painful goodbye.

T-R-A-N-S-I-T-I-O-N

 T R A N S I T I O N (S)

I thought about starting a new blog about my adventures in caring for my 90 year old father and 91 year old Mom, but it didn't seem necessary. I have neglected my blog for a long time because I've been up to my eyeballs in taking care of "the twins", as I affectionately refer to them, but my posts on Facebook seem to be getting longer and so I feel it's time to get back to my blog.

In the beginning, this blog was about a 40 something year old woman who found sobriety on 11 January 2004, and learning how to live as a responsible, productive citizen. In the time since my blog began, my son and daughter have grown up, married wonderful spouses and made me a grandma in 2014 - adding 3 new beautiful grandbabies to our family - my son and daughter in law brought their beautiful little girl, Evelyn Sophia, into the world on 8 September 2014 and my daughter and son in law chimed in with identical twin daughters in late October. What blessings!!

In September 2012, it became necessary for me to stop working OUTSIDE my home and tend to my parents. Memories were failing and medications were screwed up and mother suddenly gave up cooking. One day, she just didn't do it anymore. My Dad is a great man, but he's useless in the kitchen, possessing no knowledge of how coffeemakers work, how bread becomes toast or how to scramble an egg.

Me? For most of my adult life I had about as much interest in cooking as I did underwater basket weaving. The kitchen was a place I breezed through to grab iced tea, a snack and frankly I took most of my meals out. In September 2012, I became chief cook and bottle washer - because it finally occurred to me that while Smithfields and Pizza Hut are convenient and tasty options, they aren't sustainable in the long-term. 

So my self-taught culinary education began. At first, it was a clumsy, messy and sometimes inedible affair but as with most things, applying time and tenacity and step by step instructions online, I learned how to cook. I must say I've given a pretty good account of myself and as of this writing, no one has incurred any gastrointestinal issues as a result of my culinary offerings (touch wood). In fact, there are some days I find great pleasure in creating dishes and I have learned to look upon this, and so many other things I've been conscripted to take on, as challenges in the "I dare you to try - let's see what you've got" kind of self motivation. 

I've learned a lot of lessons, gained new skills, been made humble and stumbled a few times - but the good news is that I've grown and stretched in more ways than I can count. I'm grateful, but it's not all sunshine and daisies. There are days when I'm sure I'm in my last moments of sanity. There are nights I hit the bed and I'm positive I won't be able to summon the physical and emotional strength to get back up again. Some days I feel as if my head will explode if I hear my dad retell the same stories he's been repeating for the past few years. When upcoming doctor's appointments arrive and I'm tasked with getting both of my parents to Wilmington Health for a visit with Dr. Babiss, I feel as if I'm herding cats - my Mom with her bulky walker and my Dad with his lack of coordination and failure to recognize the building we've visited so many times - asking me if he's ever met "that lady doctor" before. When it's time to dispense my parents' daily meds, my Dad always ALWAYS asks if he's ever taken that pill before and is it for him? He's only been taking that pill for about 20 years and yes, it's for him. We have that same conversation every single day. Every. Single. Day. Not a day goes by that my Dad doesn't see a speck of dust or a leaf on the floor that he doesn't bend over, pipe fully lit in his mouth, and dump hot ashes on whatever it is he's trying to pick up which isn't nearly as noticeable as the trail of sometimes red hot sparks that drop out of his pipe. I remind him daily, please don't bend over with your pipe in your mouth to which he instantly asks me "how come? I won't spill anything!". Ummmm, yeah you do and it's dangerous.

Watching the mental and physical deterioration of my parents is one of the most painful experiences I've ever been exposed to. It's so heart wrenching at times that it almost physically makes my heart feel as if it's breaking. My parents have been blessed - it wasn't until their late 80's that mental deficits began piling up but when those glitches began happening, they have accelerated so that as I write this in late February 2015, there are days that my Mom doesn't really know who I am. She knows my name is "Susan", but I'm not "her" Susan. She doesn't connect the dots. My Dad will look at his great granddaughter and when I ask him who she is and what her relationship is to him, he'll think for a couple of minutes and exclaim, "She's my grand niece!". This from a man who has devoted most of his retired life to genealogy research and has over 15,000 names on his Family Tree Maker. 

But there are those golden moments, and they never fail to catch me by surprise. I will hear my Dad loudly and lovingly exclaim to my Mom, bending close to her face as she sits in her recliner in their room, "I love you, I love you, I love you!!!!" or, "did you know you're prettier today than the day I asked you to marry me?". There are those moments when my Dad comes over to me and gives me a tender hug and says, "Your Mom and I sure do appreciate how you take care of these two old people...". Some mornings I'll walk in the kitchen to get their breakfast started and he will be ever so gently holding the chair for her and easing her into a sitting position with the greatest care imaginable. Some evenings I'll walk by their room and overhear my Dad patiently answer my Mom as she asks him, "When are we going home? How long have we been here? Do my parents know we're living together here? Can we go to West Virginia and see my brothers?". My Dad tenderly tries to bring her into the present, as much as his own memory has a grasp on it, and with kindness tries to give her comfort.

This is an emotional gig I find myself in the middle of and tears come with the territory, but I keep them private and out of view. As a 55 year old adult, I understand perfectly what is happening to my parents from a clinical standpoint, but as the only living offspring of these two, I dearly miss my parents a little more every single day. It sucks to see your two most amazing role models, a pair of the finest people you could ever hope to meet, who have guided you and been incredible examples of integrity and love, falter, fail to recognize you, grapple with the simplest of tasks like opening an e-mail, working a simple jigsaw puzzle or turning off a faucet rather than just walking away and leaving it running. 

This is what I want to use my blog for now. As difficult as so much of this is, and for as much as I sometimes imagine myself far removed from this situation, I know there will come a time when I will want to remember so many of the little things. I want to remind myself that we all did the very best that we could.

I'm not alone by any stretch of the imagination - there are a lot of us baby boomers out there engaged in the same role of caregiver. My situation may be a little unique in that I have no living siblings and I am a full-time caregiver to both parents. I'm outnumbered and on most days, I honestly surprise myself that I've managed another day of keeping it all together, but there are moments I feel desperately tired and I just want a few hours where I'm not in charge of anyone or anything. 

I do have full-time aides who are furry and go by the name of Cleo and Sailor - two rescue dogs that rescue me on a daily basis. They interject "life" into my daily grind. They demand that I go outside and throw a tennis ball and almost every day they insist that I take them on an errand, even if it's nothing more exciting than a trip to CVS or Smithfields or the grocery store. When they see me grab my Doc Martens, coat and car keys, they are front and center and, because I fear my parents may accidentally open an outside door leaving the dogs to take the opportunity to run like the wind, I feel safer taking them along with me on most every outing I make. They are wonderful companions and they also have proven themselves as fantastic therapy dogs to my parents. Their antics, affection and interaction never fail to add laughter and joy to my parents' lives. I couldn't get through my days without Cleo and Sailor. I will forever be in their debt.

While it's true I have no siblings, I do have an amazing posse of the most generous and steadfast friends one could ever hope to meet. My dear sweet Sharon leads the pack - this woman truly makes my life so much easier and is a constant reminder that I am not alone. Sharon was one of the first friends I made when I moved to Wilmington in August 2000. I knew absolutely no one but it didn't take me long to find her. She watched in horror during the early years of our friendship and pulled me out of many of dicey situation, courtesy of my serious relationship with red wine and when it was finally time for me to confront my drinking and admit that I had become powerless, she truly held my hand and helped me believe that I was stronger than I felt. In the years since I popped that cork back in the bottle, as I've grown and regained so much that my drinking took away, she has celebrated my victories and made me believe in myself. For those reasons alone, she's been one of the most pivotal humans in my life but as I've made my way through this journey of caregiving, she's been not only a staunch source of support, but she's done a great deal of the heavy lifting right there with me. In every way except blood, she IS my sister, along with our buddy Anne, and these two women keep me laughing, cry along with me when it's needed and their support gives me courage; when you're taking care of "eldertwins", you need all the courage and stamina you can get your hands on. These women, along with other angels in my life, deliver in spades. I can honestly say that while the mission of caregiving can be a lonely business, I have seldom, if ever, felt truly alone. My friends make that impossible for me and I'm so dearly grateful for each of them. 

Reaching out doesn't come naturally to most of us. However, it does become necessary. I want to be someone who learns to lend Grace as my own friends have so often and generously given Grace to me. Friends both local and far flung have showered me with so much kindness, packages of spirit lifters, cards, teas, sea glass, sailboat pillows, mugs with sayings that make me smile and feel loved, books that share advice for this passage, notes and cards that whisper comfort and joy. I'm so humbled by these gifts. I'm incredibly blessed by these angels who literally light my path and "walk me home". I can't even express how much this love means to me - a gentle envelope or box of strength that, regardless of what it contains, says, "Yes, you can keep going. You'll be fine.". There are so many wonderful people in this world and when you're in the trenches, you notice them as never before. 

I don't know how much I'll be updating this site, but I want to try and keep it current. If you're in the middle of parental caregiving - feel free to reach out to me. If you're not, feel free to reach out to me anyway. I'll do my best to reach back to you.