The Speech

This is a bit longer than my usual posts.  Recently my friend sent me a text asking if I would share my story of caregiving at a meeting of the Caregiver’s Coalition in our county.  This is the speech, and Hillary was with me. 

 

My name is Sue and this is my daughter Hillary.   She is 19 years old and was diagnosed with Aicardi’s Syndrome when she was 6 months old.  Aicardi’s Syndrome is a rare disorder, only about 500 cases worldwide.  The three markers of this syndrome are absence of the corpus callosum, which is the part of the brain that connects the two hemispheres; seizures that cannot be completely controlled by medication; and very specific shaped lesions on the retinas.  Hillary is considered moderately affected by this disorder.  She is legally blind in one eye due to 11 lesions on the retina, and has near normal vision in the other which has only 3 lesions.  She has clusters of short seizures on average 3 times a day.  She has no verbal communication, cannot walk, and cannot take care of herself in any way.  She relies on those around her for everything—changing, rolling over in bed, getting into and out of her chair, bathing, and feeding.  She eats only mashed or pureed food and thickened liquids but doesn’t take in enough for good health so has a feeding tube as well.  I am her mother and her primary caregiver.  My husband and my adult daughter pinch hit for me, but 99% of the time I’m on deck.

Caring for Hillary has impacted me in many ways.  The emotional impacts cycle around the same as the grieving cycle does.  Disbelief, anger, and sadness are likely to hit at any time, sometimes brought on by something as benign as a TV commercial.  There have been times that happy occasions took on a bittersweet tone due to this cycle.  Whether it’s because she couldn’t join other children in a basement playroom when at a dinner party at a friend’s house, or because there’s no room for her wheelchair at the holiday dinner table it’s sometimes a hard pill to swallow.  

Financial impacts come from the cost of supplies and equipment that are either not covered by insurance or Medicaid at all, or are only partially covered.  Also impacted is my ability to work at a full time job.  I’m lucky to have found a part time job in the school system so that my schedule and Hillary’s are about the same, limiting how often I need my husband to take time off to stay with her.  There are only so many days that can be taken off a year and some must be saved for illness or emergency.

My health is probably the thing most negatively impacted by caregiving full time.  I have chronic back problems which are made worse by the physical demands of moving my daughter.  Other health issues are impacted by the need for someone to always be with her.  I have scheduled surgery around her pick up and drop off times from school.  No matter how I am feeling the same care needs to be given.  I’ve had pneumonia, stomach bugs, vertigo, and cellulitis at one time or another and still had to get up at 5 a.m. and get her up and out the door to the bus.  It's better to send her off to school so I have 6 hours to rest than to keep her home when I'm not well.  Being a caregiver is a non-stop, no time off full time job.

I wear many hats as Hillary’s caregiver.  First I am her mother.  Other hats I’ve worn are nurse; physical, occupational, and speech therapist; wheelchair tech; case manager; and advocate. Last year the brakes on her chair broke and although the vendors are quick to come out and diagnose a problem, they are extremely slow in fixing it.  In spite of my having given them my credit card information and asking that they go ahead and order the part so the repair could be done quickly it took at least 6 weeks for the repair.  In the meantime, I figured out a way to make it work.   I’ve gotten money back from a health insurance company when they were not processing claims properly, I’ve gone toe to toe with school administration, and I’ve fought with the DDD to get the help and equipment we need to keep Hillary at home, in her community and happy.  I’ve written countless letters over the years and one of the things I’ve learned is to never send a letter to only one person.  I copy many people on every letter I write to anyone.  I’ll copy to the person’s supervisor, their supervisor, my state representatives and senator, the head of the state agency involved, the public advocate, the governor, an advocacy group, and anyone else I can think of.  The more eyes that are looking at a letter, the harder it is to simply brush me off. Eventually someone will look at that letter and say “hey, this isn’t right” and make a call that gets things going.   I’ve also learned to keep most of the emotion out of the letter and to be specific as to what type of help I am seeking.  Keeping a more businesslike approach has served me well.  Another area where this approach has been useful is during meetings.  When I have felt my emotions getting the better of me, I have stopped the meeting and either taken a break or asked that we reconvene another time, or suggested we finish up with a phone call in a few days.  This approach has allowed me to be the one in control, not someone else who doesn’t know my daughter as well as I do.

My greatest caregiving needs are equipment and respite, and I don’t think there could ever be enough respite.  The logistics of getting Hillary around and making sure there is someone to care for her when I am not there are at times daunting.  I can’t accept an  invitation, make an appointment or even go to the store without thinking about what Hillary will be doing, where will she be, who will be with her.  With our wheelchair conversion van I can take her most places if need be.  There are times, however, that it is either inappropriate or physically impossible because of barriers to the building to take her with me.  If my husband has to work late, my older daughter is working or has a class, and my respite worker is unavailable I may have to turn down an evening or weekend invitation or cancel an appointment.  If our van breaks down, we are stuck, and Hillary goes nowhere except to school.  We have a patient lift in our house which has been wonderful, and if that ever broke we’d have a serious problem as we are unable to lift her without it.

I don’t mean to focus on all the negatives.  Hillary has been in public school in our town for 12 years.  She’s been in chorus, been a girl scout and in town parades.  We go shopping and to festivals, fairs, parties and places most families go.  We’ve learned, because of Hillary, to truly relax while we’re on vacation.  She cannot keep up with a frenetic pace, so vacations are the time we really slow down and just rest and unwind, visit one attraction a day, or just enjoy the town we’re vacationing in.

In closing, the past 19 years have been challenging, but at the end of the day, when she’s snuggled into her bed, Hillary is simply my baby and I am her mother.

Odd Things

So far this has been a year of odd things for me.  We’re beginning the 8^th month and I think I’d like to review.

-Going to the chiropractor.  I’ve done that a lot this year, and as grateful as I am for the help and healing I have received, it is an odd situation to be in.  There I am, lying on my stomach on a table with my face mashed into the paper covering the little cut out in the head rest talking to someone I can’t see while he manipulates my spine.  I wonder what it would be like to talk mostly to people’s backs all day?  One time my regular chiropractor was out and his associate treated me.  Wow!  I didn’t realize how much I trusted my doctor until that day, I couldn’t relax, his methods were different and by turns I felt like a rag doll and as if I were going to fall right off the table.

-My legs.  Well, once I had the cellulitis which delayed by a month the delivery of steroid injections for my back pain, all the doctors and nurses wanted to look at was my legs.  They still look at, touch, comment on and ask about them.  At one point I told the doctor he wasn’t allowed to look at them anymore.  Everyone there laughed; I’d just woken from anesthesia—but I was serious!  Enough already with my legs!

-Hillary throwing up on the dentist and the hygienist commenting on my sneakers immediately after—way to fill and awkward moment!  Speaking of my shoes, the chiropractor frequently comments on them.  It just occurs to me that medical people are spending an awful lot of time looking at the bottom of my extremities.

-Being greeted by people who know me and I have absolutely no idea who they are, even after they tell me.  Kind of awkward to have to tell them I truly have no idea who they are after they tell me that we went to the same high school.

-Physical therapy.  Seriously, I’ve been having some and every time I look around I think how odd it looks with all the assorted adults doing strange exercises—me balancing on a ball while raising opposite arm and leg in turn while a lady walks sideways on the treadmill and a man, wearing what looks like a foam bath mitt, stands facing the mirror wall slowly running his mitted hand up and down the mirror, while still another man lies on his back on a table doing the same motion I am on the ball.  If an alien saw us, I wonder what they would think.

-Me with a smart phone—‘nuff said!

-Me trying to figure out which button on the remote for the new van opens the door I want to open.  Seriously, I had every door opening and closing simultaneously in the parking lot of Hillary’s doctor’s office.

Ok, so those are just a few of the odd things that have been happening in my life this year.  I hope your odd things are few and far between.

The “ON” Button, Please

               Recently I borrowed my 23 year old daughter’s car.  It’s a pretty zippy little car into which she had installed a new radio when she first got it.  I remember my first car and its radio.  Turn the knob to “on”, adjust the volume with the same knob, and then turn it off with it.  So easy!  I could not figure out the radio in this car.  There was no “on” button.  There was a screen saver that told the time for a nano second every 30 hours or something, because I never once saw the time.  Thus I arrived at an appointment in a flustered state thinking I was late.  I was on time.  I tried at every stop light to figure out how to make some music come out of the speakers.  All I could find was an “off” button which I stabbed repeatedly thinking that perhaps the maker thought turning it off might be more important than knowing how to turn it on.  There were buttons with arrows, and letters, I think one said “source”.  Driving down the highway stabbing at buttons trying to get some music going in the little car; now that’s the way to get to an appointment!  This of course is just another incidence of my troubles with modern electronics.  I’m still learning the ins and outs of my smart aleck phone, and now this radio.  Thank goodness it’s not in my vehicle, which was in the garage for repairs the day I borrowed my daughter’s car.  Once my vehicle was ready for pick up my daughter drove me to the garage.  I told her of my trouble trying to turn on her radio.  With a mildly amused smirk she pointed to the proper button.  It was the one marked “source”.  If I sat in that car for a year I wouldn’t have ever guessed that was the one to turn on the radio.

Writing Prompts

From time to time at my writers group we agree to use writing prompts to have something to share and discuss at our next meeting.  Sometimes I share them here, this is one of those times.  Just a little light reading for you on a hot summer day.

This writing prompt was "I used to think..."

            I used to think Candyland was a real place.  The lollipop forest, and the pool of root beer with a vanilla, chocolate and strawberry float were places I wanted to visit.  As a child with a fertile imagination I also thought that leprechauns lived in the hole at the base of the old maple tree that grew near our porch.  I thought Rudolph really lit the night to lead Santa on his rounds and Frosty the Snowman really came to life.  The whole world was like me, with clean running water, a soft bed at night, and loving parents.  Everyone, I believed, had nice schools, books, and enough to eat always.  Sometimes I wish I could go back to that time when everything felt so simple.  To have that bubble of innocence around me, how restful that would be!

``````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````

 This one was "They had nothing to say to each other...."

Uh oh!

They had nothing to say to each other as they sat together looking at the body.  Each going over in her mind the series of events leading up to this moment.  Sandy found her voice first.  “What have you done Jen?”

Jen swallowed, and croaked, “Nothing, he just stopped and died.”

“I don’t believe you.  You were always talking about poisons and how a good whack with a hammer would get rid of him!”  Looking back at the little body Sandy whispered, “Poor little guy.”

“Oh cut it out Sandy!”  Jen’s voice got louder as she went on, “You wanted to be rid of him as much as I did.  ‘Poor little guy’, oh please!”

Sandy and Jen froze at the sound of approaching footsteps.  “Is that my Joey?” With fear in their eyes the girls turned to look at Mrs. Higsby.  As Sandy opened her mouth to answer she was interrupted by “Yip! Yip!” and nearly lost her footing as the ball of fur that was Joey scampered through her legs to his owner.  Not noticing the looks of disbelief on the girls’ faces, she handed each of them a five dollar bill and said “Thank you young ladies for taking care of Joey for me again today.  See you next week!” The girls were still gaping after her and the little dog long after they had disappeared from sight.

The Smart (aleck) Phone

Well, I am now the reluctant owner of a brand new “smart” phone, or as I like to call it (when I’m not cursing at it), a smart-aleck phone. I can think of nothing in recent memory that made me feel more stupid than this piece of electronic wizardry.  Why, I have been asked, did I purchase it if I don’t like it?  I’ll not get into all the reasons, but suffice to say data share plan, two family members who were interested in them, and passive aggression of sorts.

The first problem arose when the salesman, we’ll call him “Joe”, was transferring contact lists from our old phones to our new ones.  Of the three of us, mine refused to do it.  I don’t know if my old one refused to let go, or the new one refused to accept.  “Joe” told me I’d have to do mine manually.  I told him that I should get a 5% discount for my trouble, but he just gave me an amused look and continued entering things into the register.  Next, the screen protector on mine had bubbles in it, in spite of him trying twice to put one on smoothly.  I suggested another 5% discount might be a good will gesture.  Again the amused look while entering data.  Perhaps he was a bit miffed because in spite of his urging us to purchase cases for our phones from him, we huddled briefly and decided that we would go to a nearby discount store and purchase them for about 40% less, thus robbing him of some of his commission.  When he told me the total I just about passed out, but handed over my card and smiled.

To celebrate our new purchase we decided to stop on the way home for dinner.  While waiting, we took out our smart phones and tried to figure them out.  Of course, my 23 year old daughter had no problem, and a bunch of “oh  cool!”s came from her.  “Hmm!” and “Ah ha!” could be heard emanating from my darling husband, while I sat there muttering curses under my breath trying to figure out how to do the most important things I want my phone to do—make and take calls, and text.  Once we were home it was time to try out all the ring tones and set all of that up.  I confess, I am not crazy about any of the sounds that come with the phone, but chose them anyhow.  Next came me trying to download “apps” and then figuring out how to turn the sound off of the notifications.  Really, I don’t need to know every time someone comments on something on Facebook that I have “liked” or commented on!  Nor do I need to know every time someone takes a turn on “Words with Friends”.

Then came the day that I had a voicemail, and couldn’t figure out how to listen to it!  By the time I thought to put the phone to my ear, all I heard were the last 2 words of the message.  I tried and tried to listen to it again, but could not figure it out!  Everything I tapped on either did the opposite of what I wanted, or did the same thing over and over, and wouldn’t clear.  Tempted as I was to throw the stupid thing out the window of my van, I compromised and threw it on the empty seat next to me.  The following day I had my daughter show me how to listen to voicemail.

A week after purchase, I am slowly coming to terms with my smart-aleck phone.  It’s like a new child; try to figure out how it works, then work hard to get it to do what you want.  If it starts talking back to me or sticking its tongue out I’m definitely throwing it out a window!