20 May 2015
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
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,
28 April 2015
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.
21 April 2015
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.
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.
19 April 2015
Lightning fast. That's the speed with which my focus changed during the first fifteen minutes of my interview with the Lower Cape Fear Hospice. I entered the process feeling sad and maybe even a little disconsolate that both of my parents were about to be admitted as hospice patients. Just a couple of minutes into the one-on-one interview with the hospice admissions nurse I realized we weren't in the club yet.
On paper, Lisa shared that the information she had gleaned from their medical records didn't make my Mom and Dad what one might call a "slam dunk" for the program. I filled in what blanks I could with impressions and facts of their past three years of history as my captive patients, but a lot would depend on the admissions nurses clinical impressions.
After answering something like 45 minutes worth of questions, it was time for the nurse to, literally, "meet the parents". I escorted Lisa into their room. My Dad was still in the middle of an intense two hour plus nap, so I introduced her to my Mom. Lisa was very engaging and my Mom was gracious and accommodating. She allowed Lisa to take her vitals, various measurements and happily answered her questions. "Miss Maxine, who is this lady?", pointing to me.
My Mom grinned, hesitated and then confidently stated, "She's my...she's my coworker. We get along great!". That was a new one on me - for months I've just been Susan - not to be confused with her daughter Susan, and sometimes I've been "that girl" and "what's her name".
It was now my Dad's turn and he was still deep into his nap. I sidled up beside of him on his bed and said, "Daddy, you have company. Someone is here to see you. Wake up." Slowly his eyes fluttered and he looked around and saw the pretty lady smiling at the end of the bed and he worked his way into consciousness. "Hello there" he said as he reached out his hand to grasp hers.
Daddy agreeably consented to the blood pressure cuff, pulse ox monitor and ankle and upper arm measurements, occasionally looking at me with a bit of a puzzled expression. When Lisa asked him who I was, Daddy hesitated and said..."I think she's my daughter. Whoever she is she spoils us rotten." He answered a few other questions - some of them right and a few of them not so right.
After about forty minutes of checking over my parents, Lisa thanked them and we headed back into the hall. I searched her eyes for a hint at what she was thinking. She asked if there was a room she could use to go over her findings with the doctor who would make the final decision. I invited her to use my office upstairs. Of course, I pointed out all of the framed photographs of my three granddaughters and she appropriately agreed with me that they were most beautiful babies to grace the earth. (Good job, Lisa!). I then went back downstairs to join my best friend and "executive director of my support and sanity", Sharon. We held our breath, exchanged anxious glances and waited.
I began hearing the "Jeopardy" theme song humming in my head. Crazy - just two hours earlier I was despondent over the fact that both of my parents were about to be admitted to hospice care and now I was scared out of my mind that they wouldn't qualify. Go figure. It was only 3:00 PM and I'd already been on a mental/emotional rollercoaster of epic highs and terrifying lows. Sharon was perfect; kind and just as concerned as I was, but having her right beside me was the most comfort I could hope for and I dearly appreciated her support.
After about thirty minutes, Lisa came downstairs and we reconvened at the dining room table. Sharon and I were both scanning her face for a hint at the verdict. Lisa pulled out her computer, two folders and a pen - as it turned out after discussing our caseS with the doctor, we were given the green light.
Insert a gigantic, relieved and genuine "WHEW!". I believe Sharon and I exhaled in unison.
Then came the paperwork - material that Lisa had to explain to us and forms that I had to sign. I had absolutely no idea what all hospice might cover but whatever it was, it would be more than I had and my resources and reserves were running low. Lisa handed me two life preservers and I grabbed them and clung to them for dear life.
My parents' medical care will now be under the auspices of hospice. That means that if someone falls in the middle of the night, I no longer have to figure out how I'm going to go with one to the ER and wrangle the other one with me because neither of my parents can be safely left alone. When I allowed my mind to take that information in, it was only at that moment that I realized what a paralyzing fear that had been for me. Every night I'd go to bed with a hundred or so possible nocturnal terrors playing a vicious game of tag in my mind and at the moment we were officially accepted into hospice, it was as if a giant, powerful and benevolent playground monitor chased those terrorists away and locked the gate so they couldn't get back in to harass me. Call it hyperbole if you like, but that's exactly what it felt like.
With a few signatures, I was to learn that if one or both of my parents experienced dizziness or signs of an impending stroke, or fell on the way to the bathroom, or spiked a temperature out of nowhere, or was suddenly incapacitated, no matter what the time of day or night, all I had to do was call the 24/7 hospice number and they would COME TO US. You have no idea how huge that is.
Durable medical equipment. Ummmmm, yes, my Mom does need a new walker and I've felt for months that my dad's cane was inadequate for his unstable, wobbly gait. With a few keystrokes Lisa ordered us two new walkers - walkers with SEATS! OMG OMG OMG!!!! Ding, ding, ding, ding - I was beginning to feel that I was the winner of the lightning round of a game show. When she suggested a bedside toilet, I started looking up at the ceiling expecting it would open up with balloons and confetti because I had just been named the GRAND PRIZE WINNER!!!!
If Lisa would have stopped at "bedside toilet", I would still have felt like the winner of the Powerball, but she went on to inform me that if/when the time came for hospital beds, they would be delivered and guess what? It's covered by Medicare. I looked over at Sharon, who's mouth was open just as mine was and said, "Get out of town.". I also looked to Sharon for confirmation that I was hearing all of this right - I mean, is this for real?
Now, my reaction to these benefits may appear to be over the top but I assure you it is not. Imagine taking complete and total care of a 90 and 91 year old, who happen to be your parents (so these aren't just any Joe and Jane Doe), who are completely dependent upon you for meals, meds, remote control...control, laundry, beverage delivery to keep the fluids coming and the UTI's at bay, medical visits and oh yes, walking, getting up out of chairs and keeping them out of harm's way and eventually arriving at the point where it's no longer safe to leave them alone with any level of confidence for the 20 minutes you dare take to careen through the grocery store aisles in an attempt to gather enough groceries for a meal or two and return home before the inmates take over the asylum. That's a "run on sentence" because it's been a "run on existence" for the past few years.
Let me tell you...offers of brand new walkers, a bedside toilet and the promise of a hospital bed if/when the time comes, not to mention a CNA who will be visiting us to assist with showers and personal care (huge!!)... the prospect of new durable medical equipment, visiting nurses, CNA's, nurse practitioners and a few hours a week of someone "holding down the fort" so that I have the opportunity to take care of things in the outside world without worrying if my house is in the process of being burned down - I promise - you would find yourself squealing with delight.
It's a crazy life where a grand prize of two admission tickets to HOSPICE could be considered a "grand prize" but, trust me, I'm in the middle of a crazy life.
It's a crazy life where a grand prize of two admission tickets to HOSPICE could be considered a "grand prize" but, trust me, I'm in the middle of a crazy life.
Where do I sign, Lisa?
...and in a moment that could only be orchestrated by a power much greater than myself, the doorbell rings right in the middle of the meeting and a man hands me the most beautiful vase of daisies and small pink roses; a heartfelt gift from a dear, sweet member of my inner circle who lives in Nantes, France and who has been a steadfast source of support and love for over eighteen years. Michel sent flowers to brighten up an extremely emotional, stressful day. I can think of no better time to be reminded that someone is thinking of you and channeling the best of thoughts than in the middle of hospice admissions. That's pretty amazing. I'm completely blessed.
So yes, the entire process took three hours and throughout the evening I felt my head swimming with all the information I had been given. "Did I hear that right?" and "Did Lisa really say that?", only reconfirmed my gratitude for Sharon's presence, who selflessly donated an entire afternoon, an extra set of ears and questions I didn't think to ask.
Please don't misunderstand...I know we haven't relocated to "326 Easy Street", but I can tell you that we're in a better place. Besides, I know "Easy Street" is a place of transition and one is never afforded the chance to put down roots there. We're all just getting by the best we know how.
Please don't misunderstand...I know we haven't relocated to "326 Easy Street", but I can tell you that we're in a better place. Besides, I know "Easy Street" is a place of transition and one is never afforded the chance to put down roots there. We're all just getting by the best we know how.
In addition to Sharon and Michel, I felt the presence and comfort of so many of my friends and family sending me positive thoughts and prayers, text messages and phone calls that reminded me of love and support from near and far away.
The cherry on the ice cream sundae appeared after dinner Friday Evening. I heard voices downstairs and as I walked into the living room, there was the ultimate stress-reliever in the form of my granddaughter, Evelyn, along with her Mom and Dad. Hugs and smiles from a seven month old sweetheart soothe the jitters of a long day and she worked her magic. My daughter in law and son offered comfort and we all rejoiced that, as many of my Facebook friends suggested, "Angels are on the way!".
I didn't really understand what all those comments about angels and helpers meant prior to Friday.
Now, I know.
16 April 2015
My parents had doctor appointments this past Tuesday. Taking my 90 and 91 year old "twins" to the doctor is what I imagine it feels like to run a "mini-marathon". In addition to the patients, there's a walker, cane and two wobbly folks to navigate into the behemoth of Wilmington Health Associates. Upon entering the waiting room, I seated my parents and went up to the desk to check them in. They both remarked what a lovely building it was and swore they'd never been there before. It is a lovely building but they'd probably been there about 40 or 50 times in the last few years however, according to them, this was their first visit.
In no time at all, we were called back for weights and vitals and then we followed the kind nurse to an examination room where we waited just a few short minutes for Dr. Babiss. She soon appeared with her usual sweet smile and kind manner and greeted all three of us warmly. Mom and Dad smiled but were mostly non communicative, choosing instead to hold each others hand. This wasn't lost on Dr. B and she motioned for me to move closer so that we could chat. She wanted to know how they were doing...really.
I revealed that probably most of the time my mother doesn't really know me and is positive she is visiting from West Virginia, where she firmly believes she still has a home. She rarely moves from the chair in her room and most of the time she seems to be in a daze. As for my Dad, he's begun to wander, but quite selectively. If I'm home, which I am 99.9% of the time, he stays in their bedroom but if I announce that I must run to the store, he immediately grabs that opportunity to do things like walk out back and head for the pool shed, amble around the front yard or, in the case of this past Monday when I made a mad dash for Harris Teeter to pick up dinner, he'd taken a 100' extension cord from the front porch and had it stretched out in a most interesting configuration right where I usually park. I jumped out of the car and asked him what he was doing? "I'm taking care of this cord - it was rolled up on the front porch," he matter of factly reported. When I asked why, he just shrugged his shoulders. I asked him about his promise to me that he would stay inside with Mom while I was out of the house and he said he had no memory of making such a promise. Oy veh! I might as well been talking to the extension cord he was playing with and twirling around. I grabbed the cord and quickly wound it up and put it in the garage so I could pull the van up to the house. Puzzled but nonplussed, he simply shook his head and toddled inside.
I told Dr. Babiss that the wandering was becoming worse each day and I'd noticed that as the afternoon transitioned into evening, he was exhibiting agitation and restlessness. Door locks are checked dozens of times as he makes an endless loop from the front door to the side door to the sliding glass doors. In fact, he generally doesn't stop this until I physically lead him back to his room and faithfully assure him that the house is secure and locked tighter than a drum. Even then, I don't think he quite believes me.
Dr. Babiss tried to engage both of them in some conversation but it was futile. I attempted to assist by asking Mom to tell Dr. B who had visited us last week. My Mom thought for a minute and then said, "I don't remember". I pulled up a photo on my iPad of my Mom holding my daughter and son in law's twin babies with Katie standing on one side of the chair Mom was sitting in on and me on the other. My mom smiled at the photo but had no recollection whatsoever of the visit or anything connected to it.
After explaining what our lives were like, Dr. Babiss very kindly told me it was time to get some help and she told me she was referring both of them to hospice. She apologized for not having suggested it sooner but there was no doubt in her mind that it was definitely time.
Upon hearing this, hearing that I would be receiving some help, extra hands, readily available resources, I was nothing short of ecstatic. I was thrilled. She finished up the exams by listening to my parents hearts, retaking their blood pressures and warmly patting them on their arms. They returned her smiles.
When it came time to check out at the desk, thinking we would be setting another 6 month appointment, the woman who takes care of these things explained that as we were being referred to hospice, they would most probably take over my parents' medical care, prescriptions and all that goes with it. It didn't quite register at that moment, but my initial happiness at expecting care assistance developed a tiny crack. I was too busy to dwell on it at that moment as I had to walk with my parents to the lab for a brief bloodletting.
When I returned home and helped my parents navigate the steps to enter the house, I put their dinner out, made coffee and then went outside to think about all that had taken place. I still felt very pleased that we now had hospice referrals, but what I didn't realize, didn't count on, was the almost imperceptible sinking feeling that was beginning to trickle into my heart. I couldn't identify it, but there was this quiet heaviness that was invading my body.
When I woke up the next morning, the tiny trickle of dread had somehow, overnight, turned into a full on flood and it hit me square between the eyes...actually in the eyes because I was crying and it took my mind a few minutes to catch up with my tear ducts and identify the cause.
Hospice. That word. Initially I didn't tie it to the concept of "final phase". Though it was difficult initially to accept that my Mom didn't seem to know me most of the time, and that my Dad couldn't remember where we lived before we moved to Wilmington or who our neighbors are or where the milk is kept, I'd made my peace with those deficits without even realizing it and apparently I'd just assigned it to aging but not to an end.
It's sort of like I "knew", but I didn't "know". I went from feeling grateful for incoming help to thinking, Oh My God...this sh*t just got real and it's a double dose of real. Crap - I just wanted help, assistance, a respite, I didn't want to think about death or end stages or continued rapid digression. No, no, no, I just asked for the "help" part. Thinking back to my incredulity of a few hours ago - I can't help but marvel at how brilliantly our minds can construct barriers and vast "mental moats" to keep us from accepting the cold hard facts of life. I mean, honestly, did I think they were going to go on forever and believe Mom and Dad were just drop a few cognitive abilities here and there but still be present and accounted for?
Apparently I did.
Apparently I did.
I called an emergency lunch with my dear sweet Sharon and over Italian comfort food at the O.C., she held my hand and walked me through my sadness and helped me make some sense of it. Additionally, she has offered to be with me when hospice comes to meet with us on Friday - I don't often ask for help but I grabbed at her offer because I need another pair of ears in case mine shut off.
I have no idea what to expect because we're on a new trail and my internal gps must be reconfigured. I'm treading water right now and I can do that until I'm given my coordinates. I'm sure I'll be given some good direction tomorrow afternoon.
In the meantime, we carry on. However, I find myself dropping tears all over the place. My mind is a million different places and I feel just a little disoriented but that's OK. I don't like this part of the program but my good friend Bobbi has told me there will be beautiful parts during this stage and she's never lied to me or lead me astray. She's personally been over this course a few times and I trust her. I am buoyed by so many messages from my social media friends who are reaching out and texting and messaging me courage and strength. It's huge and it steadies me. My Cleo and Sailor seem to intuitively know that we're heading for some heavy weather and they are literally circling ever closer to me. Thank God for my faithful furry family.
I guess I shouldn't be too shocked - my parents have always made it a point to do EVERYTHING together - so the prospect of dual hospice referrals really shouldn't come as a huge surprise. They are inseparable.
I'm not sure what the road ahead looks like, but I'll find out sooner rather than later and until then, to quote James Taylor, "I know now, love is all that matters in these days...".
We'll be ok.
We'll be ok.
13 April 2015
We've had a very busy two weeks. My daughter, son in law and my twin five month old granddaughters paid us a most welcome visit over Easter. I can't even express how excited I was for so many reasons. My twin granddaughters were a mere three weeks old when I flew up to visit them in late November and now they had tripled in weight and are wholly interactive little people who laugh, smile and melt hearts without even trying. My first granddaughter, Evelyn, who is seven weeks older and lives with my son and daughter in law here in Wilmington, was able to meet her new cousins for the first time. Imagine the thrill - I had my entire family, including my parents who are 90 and 91 - talk about a generational span! There were so many poignant, funny, absurd, crazy and unexpected moments that can only happen with three babies, four young adults, a fifty something woman and two folks who are wildly confused and over ninety years old.
We made a lot of memories and there was much laughter.
As it turns out, the ninety year olds required much more supervision and redirection than the babies. There were times when I'm sure my mother and father understood that these visitors were their grandchildren and great grandchildren but there were just as many times as I'm also equally certain they had absolutely no clue as to who any of these people or, for that matter me.
Due to a change in normal routine schedules or perhaps simply because their brain synapses are misfiring and short circuiting at a progressively rapid rate, in the days since our company left, my parents' behaviors, questions and perception have all been dramatically altered. In the past few days my mother has looked straight at me and asked me where "Susan" is and when is she coming home? I tell her that I am Susan to which she replies, "No, MY Susan. I know who you are but where is MY Susan???", she demands. I usually have a comeback for most things, but this exchange always leaves me wondering what to say?
Every single day for the past couple of weeks my mother has told me that it's time for them to "head back home" - i.e., West Virginia. She declares they've enjoyed their visit here but they've been away from their "home" way too long and they must get back and will probably be leaving "early in the morning". It is then that I have to be the bearer of bad news and explain that a) they have no home in West Virginia and they've been living in my home for fifteen years; b) they have no car and no valid driver's license and c) they're not going anywhere.
These statements are always met with the most disbelieving looks imaginable. It breaks my heart to see my Mom try and process the facts I lay out and it's so painful to watch her attempts to make sense of things that her mind must inform her can't possibly be true. She emotionally retreats and for a time the questions stop as she grapples with a reality that is completely foreign to her but is, in fact, the truth.
I try...oh God how I try...to swoop in with a diversion - ice cream, key lime pie, fresh coffee, photos of our family, bringing in Sailor and Cleo and hoping they'll do something cute (they almost always comply) which will take her attention away from the reality I've just dumped on her. I don't know who wants to run away from these moments more - my parents or me?
I take "the twins", aka my parents, to see Dr. Babiss tomorrow. I need to explain that these periods of confusion are happening more frequently and for longer periods of time and they are creating a great deal of anxiety for Mom and Dad and God knows I'm on sustained high alert, which can't be all that healthy for me. It's always worse as evening approaches. They seem to become more edgy and unsettled and my Dad has taken to wandering into the far reaches of the backyard. I'm also going to see if we might qualify for some in house Hospice assistance because I think we're most definitely at that point and frankly, every day I'm feeling just a little more overwhelmed and under-qualified.
I must confess I dread "doctor visit day". They will both swear they've never been to Wilmington Health Associates and while they'll be cordial to Dr. B, neither of them will remember her. It's been six months since our last visit and the mental deterioration is remarkable and profound. I know there is a limit to what medications can do, but I am hoping she has just a few more tricks up her white coat sleeve and will help me find a way to get some extra hands on deck.