Saturday, September 19, 2009

ALS patients are not babies...

I've become a fan of Carla Zilbersmith.  Which actually kind of sucks for me because I didn't know her before ALS and would have really liked to.  My loss.  My only consolation is that I am able to read her blog, admire her joie d'vivre and truly appreciate the tremendous effort that goes into each of her narratives. Her recent post, Big Baby on Carla Muses had me laughing AND crying as I recalled some of the caregiver/patient moments I experienced with Bill.  My post today is from the opposite end of the continuum.

For the record, we did not have babies, we had a three year stint as legal guardians for three 16 - 19 year olds.  My skills were just as limited and impatient as Carla described, so you can only imagine the conversations between the two control freaks living in our house!  To Carla's point, it is painfully frustrating (even without factoring in the potential humiliation) to be an adult who is no longer capable of operating independently.  It is all too easy to treat an ALS patient or an elderly relative as if they are a small child, even when we are fully conscious of the fact that they have learned full well how to dress, bathe, drive, and more.  Please repeat after me:
It is not ok to treat an ALS patient like a baby, not even when or if they are acting like one.  ~William Neil Lichtig
Each and every day some bit of independence is stolen from these loved ones, and deposited into the hands of a well intentioned caregiver.  And it happens of necessity, not because you and the patient came to some sort of mutually agreed to arrangement! 

Take a minute to reflect on what it might be like if the circumstances were reversed.  Would you be a "good" patient?  Would you trust and allow your spouse, child, parent to be your caregiver?  How would you negotiate the boundaries and know when to speak up or shut up? 

Think about it.  When you are rushed, it is much easier and certainly more efficient to put the shoes and socks onto a pokey toddler who is learning to dress on their own.  However, we cheat them of the opportunity to learn independence. It's natural to yell "hurry up" when someone is dawdling. After all, there are place to go and people to see and we're on a schedule.  In the same way, it's easier and much faster to do everything for the ALS patient you are caring for, ultimately shortening the dwindling thread of their independence and cheating you of some much needed respite!  I am not for one minute suggesting that you allow anyone, child or adult, do anything that is dangerous or will result in serious injury.  But I am suggesting that it is in your best interest to slow down and work to encourage/retain independence for as long as possible. 

I consider myself pretty fortunate that Bill was able to adjust quickly to his circumstances and remind me ever so gently (...not!) of what he was still capable of doing.  He could no longer manage the wash, but he could handle the dryer.  He couldn't carry groceries with his hands/arms, but if I could hang the bags onto the handles of his wheelchair or the boxes of soda onto his lap tray, he could zoom up the ramp into the house while I secured the van and he would keep me entertained as I put things away.  He could still carry his share of the load, and sometimes all of it!  

I learned to make myself scarce but stay within earshot so that I could protect myself from the heartache of watching my husband struggle to button his shirt, brush his teeth, walk any distance or any one of a hundred other little tasks.  I learned to tell him he had to do the best he could while I took care of something else.  And I learned to ASK him first, to see if he really needed my help to complete a task.  We learned to build more and more time into the schedule to accomodate his needs and capabilities.  And just as the world doesn't stop spinning when the kid goes out in mis-matched socks because everyone was rushed, it didn't stop when it took us an hour and a half to complete the grocery shopping instead of  45 minutes!

Caregiving is a full-time gig.  It's demanding and generally exhausting work.  Change is not easy. Work together and do not willingly make this job any tougher, any sooner, than you have to.  It would be great to hear how you manage this delicate dance.

Wednesday, September 16, 2009

Calendar Girls (and Guys!) for ALS

Carla Zilbersmith is extraordinary. And...she has a great idea!  I am posting this to help her find the 11 patients she is looking for!  Please contact Carla directly if you are game to join her!

My name is Carla Zilbersmith and I was diagnosed with ALS in December of 2007. I have been thinking about something I would like to do to both raise awareness and raise funds for ALS research but I need the help of 11 other bold people with ALS.

I would like to create a cheesecake calendar using ALS patients as models. I’ve seen calendars like this to raise money for cancer but they have always used friends and family members instead of the actual people living with the disease. I don’t know about you, but I don’t like to be marginalized because of the fact that I’m in a wheelchair or that I slur my speech a little. I feel like I’m the same person inside and I am forever looking for ways to remind people of that fact.

Here’s what will happen: If you’re even remotely interested in participating in this project, you will email me at with your questions as well as any concerns that you might have. I will arrange for a photographer or photographers to take our pictures and wrangle someone to help with hair, make-up, and clothing (Obviously, men won’t need make-up and bald people won’t need hair styling). The photo shoot should take no more than 2 hours of your time including make-up. None of the pictures will involve nudity but they will be provocative. You don’t have to consider yourself “hot” to participate and ideally people at all stages of the disease from not even needing a cane to using a ventilator will be part of this. I want to show the world that we are more than a disease. I have been in the entertainment business for over 20 years and I know what I’m doing, so you can trust me when I say I promise you will not be embarrassed by the picture we choose and you will not have any pictures taken that you aren’t comfortable with.

I will find a printer and a graphic artist to donate their time to creating the calendar, which ideally should be ready by Thanksgiving so absolutely everyone can buy several as Christmas/Hanukah/Kwaanza presents.

I hope you will consider being a part of this project. We won’t raise millions of dollars but we will cause a stir, make some money, and let people know that we are alive and kicking until we’re dead. Thanks for your consideration.

Carla Zilbersmith

Tuesday, September 15, 2009

More comforting words....

A few weeks ago I posted Comforting Words and shared the letter Bill wrote to me just before he died.  The feedback/comments I received were wonderful and heartwarming....thank you!  A few days ago, my mom sent the following, to be added to my "wonderful collection of quotes".  I don't think she anticipated how much comfort it would bring me.

As you might imagine, with ALS a constant presence, Bill and I talked a lot about death and the process of dying.  Not in a morbid or fatalistic way, but more from a perspective of curiosity and observation.  We became avid students and both agreed that whether you believe in creation or evolution, the body is quite an amazing vehicle!  My mom attended the memorial services of a friend of ours who died recently, not from ALS (thank goodness!), but rather in the way I hope to go...natural causes.  Hilarie was well into her 90's and had lived a very full and productive life. She was sassy and good natured, right to the end, so I find this quote is especially fitting.   
In coming to the realization that his life was coming to an end, Edward Madison Cameron shared these words with his aging body:

“When you can go no further, I shall leave you and be free… When we separate I shall continue to exist. A Power greater than you and I started us on our journey. Your journey is approaching its end and you are aware of it. My journey has merely begun and I know it because I have never felt more alive. Our separation is, therefore, not one of sadness, but of joy. You are weary and want to stop. I am longing to alight from this slowing vehicle and go on without you.”
To my dad, Bill, Hilarie, and the many friends and family members who are no longer with me physically, I toast your spirit and offer a prayer of gratitude for the many gifts of love and life you've left behind.

Friday, September 4, 2009

Dignity, Self Sufficiency and Safety...PRICELESS!

Earlier this week I posted Why does fundraising for ALS matter...really? I received some feedback that the story got lost in all of the gadget photos. So I decided to separate them. I just adore technology!!!

Dignity, Self Sufficiency and Safety may be priceless, but they DO come at a cost. That's where each and every donor hero comes in! are (or can be!) a Donor Hero. And trust me...that too is priceless! Please understand that ANY donation, no matter the size is put to good use by any number of organizations serving patients and families with ALS, such as Augies Quest, ALSTDI, ALS of Michigan, or the ALS Recovery Fund. Bill and I were blessed to be associated with the ALS Association Greater Bay Area Chapter. But there are many others - use GoodSearch or Google to find an organization near you. BTW, GoodSearch is a great way to donate "passively" to the organization of your choice! 

Here are a few of the zillions of ways your donations and fundraising efforts can help a family living with ALS:

A $25 donation allows a patient DIGNITY and SELF SUFFICIENCY.

Built up utensils, straw holder, scoop plate and a grip cup allow an adult to feed themselves

A Button/zipper pull and a key turner allow independent dressing and access to the home

A $50 donation purchases SAFETY...Bathroom grab bars and a shower chair retain independence and safety around the toilet and shower. A Gait Belt allows a caregiver to safely transfer a patient from bed to chair and back, protecting their back and retaining safe control of the patient.

  • $1 per day Provides speech amplifiers for those whose voices are now too faint to be heard. or Helps a family transport their loved one to a clinic visit. or Offers an hour of a Chapter Care Manager’s expertise.

  • ALSTDI estimates that it takes $100 to fund 1 minute (60 seconds!) of ALS specific research. Remember we still don’t know what causes ALS which means we cannot begin to find a cure for ALS.

  • A $500 donation allows an ALS specialized Regional Care Manager to do their job for 1 week. Every day, our Care Managers assist patients by recommending community resources for financial/emotional support, securing appointments for power wheelchairs, providing recommendations for in-home care, recommending speech devices, reviewing physical therapy techniques, checking in on a patient who lives independently, delivering educational presentations to a wide variety of audiences, coordinating equipment loans/transfers between patients and vendors, and so much more.

  • $1000 supports specialized care at an ALS certified clinic, where patients see a battery of specifically trained medical professionals – Neurologist, nurse, occupational therapist, respiratory therapist, speech pathologist, physical therapist, social worker, augmentative communication specialist, and physical therapist. Consider that these costs are not always covered by insurance!

  • $2000 supports the MDA's Durable Medical Equipment program - specifically the grants for motorized wheelchairs, enhancing mobility and independence

How have you been supported by an ALS organization?  Please give a shout out to the heros that help make each day a tiny bit better. Thank you in advance for your generosity. Together, we can make a difference. But it WILL take all of us. 

Calm in the midst of a storm.

I have often joked, "pick your own natural disaster and call it home".  Me...I live in earthquake country.  It's crazy I know, but a small price to pay to be within 4 hours of any kind of weather I want, exquisite dining and culture, the Golden Gate Bridge and a short drive to some of the best wines in the world!  For you, it may be floods, hurricanes, searing heat, sub-zero cold, tornados, or humidity (that acts like MiracleGro® to blood-sucking mosquitos!), but we all brave the elements, wherever we live. 

Because there is generally no warning before an earthquake, there are measures I have taken to be prepared for when the "big one" hits. I check my supplies at least once a year, but for the most part, I don't have to think much about it, because I can physically go to that spot whenever I am feeling anxious, touch the supplies/check my list and ground myself with a measure of confidence. In addition to regular fire drills (stop, drop and roll), evacuation drills (remain calm and move quickly to the designated area) and earthquake drills (drop, cover and hold on), I know that if the time ever comes, I can go my spot, take a deep breath and remind myself that whatever else happens, at my core, I have the basics covered, I've practiced and I'll be ok. 

Friends who know me well, know that I am a great believer in the natural order of the universe.  Everything happens for a reason.  There are no accidents.  Most of the angst in the world results mostly from our own perception of words, circumstances or specific situations.  Life and its experiences (good and bad) come at us thick and fast.  We just catch our breath and we're on to the next "adventure".  For me, it's not what happens, it's how I handle or react to what happens, that ultimately makes the difference in whether an event bends me, breaks me or catapults me forward into something infinitely better.  My reaction ultimately determines my resiliance and perception of the event. 

And...I can hear you all loud and clear!  "Hey Kath...wouldn't is be just ducky if there was an emotional disaster preparedness kit?"  A great question and there is!  Today's post from the DailyOM - one of my favorite websites - reminds me of exactly why I subscribe to their daily newsletter to help me stock my psychic supply box with everything I could possibly need to weather life's storms.

This site is an online fountain of inspiration and practical tools to help each reader find his/her own center in the midst of the crazy, fun, chaos we call life.  Their tagline is "Nurturing Mind Body and Spirit" and for me that is exactly what they deliver.  Day in and day out the writers at DailyOM deliver a thoughtful and positive message, complete with practical suggestions, that reminds me of the emergency/disaster preparedness kit I have for the times when Mother Nature gets fussy.

Today's message is literally about taking a deep breath in the midst of all of the swirling and noise to touch base with our inner source, as a way to safely anchor myself to the universe and remember that I have everything I need to weather any (perceived!) threats to my emotional stability.  I also subscribe to their daily horoscope and am frequently amazed at just how targeted the message for the day is?!  I am regularly reminded that it is in my best interests to listen to and value the thoughts and opinions of others, and patience is a virture for which I will always strive!  Some days I'm quite sure there's a secret satellite webcam following me so the writers will know EXACTLY what message I need to heed!! 

So how about you?  What do you do to keep your balance when the inevitable storms hit?  Please share your stories here.  In the meantime, "Cool Runnings" Peace be the Journey!