Material Things Don’t Matter

I know, we’ve all heard it! But it’s really interesting when you finally “get” it. I’m not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like “ashes to ashes, dust to dust, we shall all return to our maker”. Frankly, I’m a 70′s girl and think that the band Kansas got it right with “Dust in the Wind”, one of my all time favorite songs to belt out in the car….but I digress.

 

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty “creeped out” – no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it’s not easy to have these conversations, but for me, I received the ultimate peace. I didn’t have to guess or wonder what he wanted….I already knew.

 

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again…he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was “enough”.

 

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun – something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider “gifting” his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked “what would you like to do with the rest of the body?” eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop…”Well, I’m not gonna need it!”. They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It’s awesome! We signed the additional paperwork and never looked back. (side note:  I have since completed paperwork for myself and that feels pretty great!)

 

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his “never give up” silicon bracelet and his golden retriever, beanie baby went with him. It’s a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

 

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn’t need any clothes – that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

 

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

 

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but…I had this random thought! And…from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can’t help but wonder if they thought “hmmmm, naked guy with a bracelet and a beanie baby. I’ll bet there’s a good story here!”

 

In the end, it’s not the material things that matter. I believe it’s how you lived your life, thought of others and made people smile.

The New Road

Starting over without your life partner is not easy. In fact, I am inclined to agree with what many say about ALS. It SUCKS!

 

 

 

The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, “handle” the bugs and rodents that occasionally show up or even send up his distinctive “meow” because I’ve wandered away from him in the grocery store and he can’t find me. This, and oh so much more…I miss.

So…each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it’s familiar, where I would like to be. Where Bill and I were – together. I can stay in bed, under the covers, and let the world go on its merry way. I don’t have to participate and you can’t make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill’s death. I can definitively tell you that it’s dark and not particularly interesting under the covers!

So the only real option for me seems to be – put on my big girl knickers and a brave face, pack a snack and hit the new road. I’ve learned and come to appreciate, that if I am nothing else…I am resilient. I am not wired to live in the past….I live in the here and now. Unfortunately, I’m told that I make grieving look easy, or worse, that I didn’t grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.

So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill’s passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the “same” me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can’t breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general…look/feel like crap! Great!? How would I ever break the cycle?

For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red “right” the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It’s not always easy, but each day it gets easier and I have never looked back. Thank you Alisa…you are a genius!

SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.

Share the Care – Offering Help

Some time ago, I wrote a post entitled Ask for help / receive offers for help graciously. In it I wrote, “We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!”

I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said “I would love to have some help! I want help, I know I need help, but with everything I’m trying to cope with, I can’t always articulate what I need. The truth for me is that when you ask me “what can I do to help you?”, the offer is so vague, my brain goes into overload and I just can’t answer!” Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with “May I help you?”, and the “how can I help” conversation came rushing back…in a flood. I’ve had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with “may I help you?” It’s too overwhelming and immediately invites the customer to put up his/her defenses. (All together now…”no thanks, I’m just looking!”) In that instant, I understood what my companion was trying to say about offers of help.

The same way I’ve taught my team members over the years to greet customers with ANYTHING but “that sentence” (I’ve actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to “How can I help?”. This is a “starter set” to consider. Just remember the goal….narrow down the options for the patient/caregiver – so that you are much more likely to get a positive, definitive answer and everyone wins!

The photos in this post are of just a few of the many angels who inspired this post and came to my rescue….more than once!

• I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)
• I am free to run the “kid shuttle” on Monday or Thursday. Which would be better for you?
• I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?
• I can help you with household chores for about an hour – you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?
• I can take the kids Friday or Saturday night for a sleepover, which works best for you?

You get the idea! PLEASE add to this list by posting your suggestions!  Another alternative: Don’t ask – just DO! 

Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend’s temperment and your relationship in mind!! A word of caution…in the interest of fair disclosure: following any of these next suggestions is potentially risky!  However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:

• Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend’s yard. or…Trim the hedges. or….Mow the lawn. or…Deadhead/fertilize the roses. Other???
• Shovel the driveway
• Safely, with a buddy, clear the gutters. or…Wash the outside windows. or…Wash a car left in the driveway.

Your imagination is the only limit to builiding your Mitzvah list. Let me know how it goes!

Life is like needlepoint…thoughts on perspective

My mom’s mom, my “Grammy” Jean, was an artist. She (front lower right in the yellow shirt) doesn’t look like it here, but in her day, she was an accomplished painter, seamstress, sculptor, knitter and so much more. She also created beautiful, large scale tapestries (think love seats and major wall installations!) in needlepoint. The canvas on the right side of the photo is her interpretation of The Three Wise Men. She often said that all of her brains were located in her fingers! I don’t think that’s exactly true, but she was truly gifted!

When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is “try”! I’ve never gotten the hang of it! While I’m not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.

Anyway….a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory…when you are the artist, your skill and confidence determine how you approach your project.

Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you’ve ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back….to cover it up!

On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his…my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.

I believe in God. And this will sound presumptive, but I’m pretty sure God took needlepoint lessons from my grandmother! Here’s the tie-in. We – as humans – are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.
Seriously….take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions….everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you….are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)

As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don’t want seen.

To Him, it is all part of the grand design and it is completely beautiful….knots and all! To us…maybe not so much! I’ve come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?

Kids & ALS

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don’t personally think it’s right to frighten children by initiating conversations they aren’t curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

• Q: Why is Mr. Bill in a wheelchair? A: His legs don’t work so well anymore.
• Q: Why? A: Because his brain can’t talk to his legs to make them move.
• Q: Does it hurt? A: Nope!
• Q: Will he get better/walk again? A: No
• Oh.
• Q: Can I look at the laptop? A: Sure!
• Q: What’s he saying? A: Why don’t you ask him. He can hear/understand you and he’ll answer any question you ask!
• OK!

Bill’s laptop or “talkie” as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill’s funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to whatisals.com

for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to “walk” with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we’d have parents knocking on our door to collect their

kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to “shush” the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn’t drop, the older kids instinctively knew he was gone. Zack…a lively and curious 6 year old asked the question on everyone’s lips…
Z: “Hey….where’s Mr. Bill?”
K: “Well Zack, Mr. Bill is in heaven.” (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: “Heaven….all dogs go to heaven” (long pause as he looked around at the older kids starting to tear up) “That was a really sad movie”
K: “Zack…you are so right!”
Other kids: “Mrs. L., can we come in?”
K: “Sure, but you need to tell your folks where you are”

 

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack’s older sister Michaela came into the house, she spotted Bill’s empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I’m sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of “kids “get it” if we just give them a chance!”

During Bill’s illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question “what’s wrong with Mr. Bill?” Bill, God bless him, set me straight. “It’s just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words”. OK….great! As usual, he was right! Here’s an example:

Laughter is good medicine…

One of the more interesting symptoms of bulbar onset ALS is excessive/uncontrolled laughter and crying. We used to joke that the bouts of laughing and crying were kind of like the weather. You just need to be a little patient and the storm will pass.

I remember one particular incident where something got Bill laughing and then he couldn’t stop. He was standing at the kitchen sink and I watched helplessly as he just “slid” down the cabinets to land in a pool of laughter on the floor. Fortunately, at least on this occasion, he didn’t hurt himself! I jumped up and got behind him, to lift him safely as he’d carefully taught all of his caregivers. Only…his legs were not in a cooperative mood. I’d get him about half way to standing and he’d start laughing again, melting any bit of strength in his legs. After 3 attempts, I realized that until the lauughing passed, we didn’t have a prayer of getting him vertical again.

So…we managed to get him propped up in a corner, leaning against the cupboards. I grabbed a glass of wine for each of us and pulled up a seat on the floor right beside him. You can get a very interesting perspective on life and your housekeeping skills from this vantage point! The dogs must have thought we’d lost it, but decided to join us as well. What a site! We enjoyed the wine and talked about a lot of different things that night. The laughter ran its course in about 30 minutes and once he was back in control, we were able to get him safely standing again. We were back to “business as usual”. I’ve often joked that my life is “The Truman Show” and this was definitely one of the funnier episodes!

Lessons learned:
1) Life is about falling….Living is about getting back up!
2) Laughter is good. Too much laughter is not so good.
3) Take the time to laugh and enjoy the moment…don’t fight it – join it!
4) Hire a housekeeper!

Join an ALSA sponsored Support Group

I’m a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.To find a support group near you, check the National ALSA website.Each group is slightly different, but the basics are the same. Each regional group meets perio

dically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It’s a safe place to ask all of the “dumb” questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me…it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it’s much easier to get a feel for the bigger picture.

An ALS Love Story

In this blog you will meet the faces of an ALS community. These communities are everywhere, literally all over the world. This one happens to be in the San Francisco Bay Area of California. This is a love story…dedicated to a man who lived, laughed and loved in a community. Now each of his friends carry his story, because he can no longer tell it for himself. It takes a village to care for an ALS patient. This is the story of our village. It is my privilege to share this collection of thoughts. Please use them as a starting point for finding your own best path.

Life is a series of events handed to you. It’s not the event itself that’s important…it’s how you handle the event. My dad explained to me early on that there are two ways to handle the events in your life:
1) Stay in bed, pull the covers up over your head, don’t come out….ever.
2) Get out of bed, dry your eyes, put one foot in front of the other and do the best you can.

I now believe there is a third option:
3) Don’t even bother crawling into bed, give the event a “raspberry”, and then run and have fun! My new favorite quote is from Matt Frewer. “Never knock on Death’s door: ring the bell and run away! Death really hates that!”

So…once we got our ALS diagnosis, we had two rules that we lived by. We weren’t perfect, but we did a really good job!

Rule #1: NO REGRETS – NONE!

Rule #2: Get mad at/fight the disease, not each other! ALS will test and bring out what’s great and maybe not so great in your relationship with those you love. Neither of you caused the ALS to happen and neither of you can change the diagnosis. You have a choice to make together… You can work together to make the best of a shitty hand of cards dealt to you. OR… you can spend your time fighting. It really is a choice.

You are incredibly brave….please don’t ever forget that! But…I have a question? How do you want to be able to coach the next ALS family that’s coming behind you? Now is your time to decide how you’re going to write your ALS story….together! The rest is still unwritten.

It is only now that I’m realizing how fortunate I was/am and how much Bill and I grew, as individuals and as a couple once ALS was introduced into our relationship. It is my fondest prayer that you will find new strength in yourselves and each other and that once your PALS is gone, you’ll look back fondly on this time and be glad that you got it together, together!

The Project Gift Box

Organizing yourself and friends to help with caregiving.

Asking for help is a very difficult task. I’m not certain why, but I suspect it is because we, as Americans, are such rugged individualists….we just don’t need any help. As mentioned in previous postings, I am a true believer that it takes a village to care for an ALS patient. I was discussing this with some friends recently and came up with a possible solution – a way to turn the “gift” of time and service into something that we can intellectually accept with grace. When you think about it, if someone you cared about took the time to wrap up a small gift and gave it to you, you wouldn’t turn it down. You would thank them immediately, unwrap it, oohh and aahh, and then probably send a thank you note. Here are suggestions for creating your own “Project Gift Box”.

• Find a box with a lid
• Go all out and decorate it to your hearts desire! Wrap the box and the lid separately.
• Find 4 – 5 different colors of paper – Medium sized PostIt squares are the perfect size!
• Colors correspond the the amount of time which can be donated for any given offer (i.e. 15 – 30 min., 30 – 60 min., 1 -2 hours, 3+ hours)
  
• Tape one slip of each color with the time allotment to the inside of the lid (to help you remember!)
  
• Think about the projects around your household that can be shared/delegated (see suggestions below)
• Jot each project onto a colored slip of paper and add it to the decorated box.
• When someone asks “What can I do to help you?”, ask them how much time they have to “gift you” and then ask them to pull out a colored slip from your gift box.

There are chores that only you can do. But the list of chores to be done (and it doesn’t really matter by whom!) is endless and limited only by your imagination and willingness to let your friends and family help you. Trust me…friends will truly be grateful for the opportunity to help with your caregiving responsibilities. Here are some distinct project ideas to get you started. Share your ideas and successes by responding to this post!

• change the bed linens
• fold clean laundry
• assemble a grocery list (look in the cupboards and learn the specific brands you prefer)
• go grocery shopping
• put away groceries
• pull weeds
• read to a patient or a restless toddler
• help with homework
• walk the dog(s)
• clean the catbox, hamster cage, rabbit hutch, bird cage, goldfish bowl, etc.
• empty the diswasher
• clean the toilet(s)
• mow the lawn
• take the car to the carwash
• follow you to the dealership/repair shop for auto servicing
• drop off a bank deposit
• plant flowers/veggies
• clean the pool
• run the vacuumn
• rake leaves
• clean gutters
• carpool kids to school, soccer, dance lessons, etc.
• collect the trash/recycling
• pick up a prescription, dry cleaning
• return library books, video rentals
• shovel snow
• hose off window screens

Get Strong Today!

Do not wait as long as I did!!! Find 45 minutes a day and get to Curves® if you are a woman or the YMCA if you are a man. There are lots of things you can do at home, but it is my opinion that you need a program, the equipment and the coaching to give you muscle strength quickly. Both Curves and the Y fit the bill. If your PALS is still reasonably self-sufficient (they can manage by themselves for 45 -60 minutes) get signed up and get going – every day. If necessary, get someone to stay with them for an hour. Whatever it takes…you will absolutely, positively need muscle strength to manage your PALS as they lose muscle capability. When you say “I’ve got you….don’t worry”…make sure you’ve got a muscle (or three) to back it up!