A Poem on ALS

I got the sweetest email the other day from a new friend named Hollie. Her husband Adam has ALS and they shared a poem that Adam wrote with me. I loved it and they gave me permission to share it here with you too!
Legs

By: Adam Caldwell

My legs don't listen to me any more
My hands forgot what my fingers are for.

My lungs can't seem to hold any air
None of this seems very fair.

My necks not up to the task at hand
My head feels like 50 pounds of sand.

My muscles are all shrunk and dwindled
I feel like I've been robbed and swindled.

My voice has almost joined the void
Good thing I have two thumbs and an android!

Love is something that will never strain
It eases the hurt and the anger and pain.

Spirit is one thing they can't take away
And I've got plenty some people would say.

I remember as bad as it gets you see
That there's always someone worse than me.

So ill finish my life just like I started
And cherish every moment until we're parted.

The Myth of Morphine

There is a prevailing myth in the world about hospice and morphine. I know I believed it and hospice tells us they encounter this almost every time they go into a home. I knew hospice came in before the coma stage but the myth we all believed was that when the morphine started we were essentially starting to put her into a medicated coma and she was going to start sleeping a lot.

NOT TRUE!!!!

We would have started the morphine weeks earlier had we know that she would not only be alert but happy again! Its not a drugged silly stupor either. She is comfortable enough to be herself. How I wish we had known! The last few days have been wonderful. Smiles are back and she just seems....comfortable. I feel like we are abusing that word but its really the best description. They mean what they say in the term comfort care. From what I understand when the morphine levels get really high there is a lot of sleeping, but I'm not sure if at that point its from the morphine or because the body is shutting down.

We are lucky we had started the medication and had her comfortable because she had what I would describe as her first experience with "air hunger." It wasn't horrible but we should have figured something was wrong earlier. She was telling me that she hadn't been given her anxiety meds and I was telling her we had given them to her but she was still really frustrated and agitated. She seemed really uncomfortable and fidgety. I could kick myself for not evaluating her all overall but we were working so hard to distract or make her comfortable that we were missing how hard she was breathing and that her retractions were really deep.

She finally told us she couldn't breath when we looked it was shocking. We put her mask on her and she calmed down and we eventually got her comfortable again. Its been busy with all of the different hospice workers coming in and we had a new bed delivered that is the TURBO comfort low air loss alternating mattress. She was having a sore spot on her tailbone and thighs, a sure sign of a pressure sore starting, but that is already getting much better just after her nap in the bed.

It feels good to know we were on top of things enough that when we hit this first air hunger type of moment she was already medicated enough that it was not too traumatic. (Sigh) At the same time its like we just got everything figured out. There were smiles and peace for just a brief moment and now we are moving right along into the next stage. I guess that's good, its what she wants. The process is just exhausting! Its hard when you see her uncomfortable and so you do everything you can to make it better but you get so caught up in the pressure when all you really need to do is take a step back. That is the hardest lesson to learn, and just when you think you've mastered it everything changes again.

The Best of ALS

My Mom has always showed us by example that there are two sides in any situation - it just depends on which you want to focus on. This post is not in anyway trying to minimize the difficult of ALS but today we are going to focus on the top 3 best's that ALS has to offer!

Coming in at #3
For such a horrible disease it is not very painful. When you look at other diseases we have a lot to be grateful for.

#2
Its terminal. How in the world does that make our best list you ask? My Mom and I talked quite a bit about this, how there is peace in not having to wonder if she will beat this. From the minute she was diagnosed we knew where this was going to end and therefore we could prepare for that end. There are some diseases where you are given chances and treatments and you hope they are working and praying that you are getting better. You have to live with hope while wondering if you are going to die. With ALS there is no wondering, we were able to prepare and make sure we lived without regrets and she was able to put all of her affairs in order. Things like our Disneyland trip.

And the #1 Best is......drum roll please..................
People have a chance to say the things they would normally not say. Not only has she had the chance to hear the impact she has had on the lives of her children and husband, but from all of you her friends. She will leave this world knowing how much she is loved. There might not be a better way to go than going with the knowledge of how much you are loved by those around you.

So while we are not recommending anyone start praying to get ALS - if you or someone close to you does ever get diagnosed with ALS please remember that there is another side of this disease that in fact can be seen as a blessing - dont stop looking the blessings are there.

Cruising

Here she is cruising around and giving Davis a ride in her new chair :

The van is all retrofitted to hold her new chair and the passenger seat replaced with one that turns out and down so she can transfer easily and comfortably.

She does great driving her chair around especially since they are so touchy. We had a funny experience Target when she tried one of their electric chairs. We think those might be designed more for people who are obese because they make the handle so far out in front its hard to reach. She had to lean way forward to even reach the handles and since her arm is so weak she couldn't keep it up and especially turn. Davis hopped on her lap and drove her all over Target.

Retraction

I am going to have to retract my earlier statement that we had not seen much digression in my Moms breathing. As I sat by her at church her breathing felt off to me and when we got home I examined her closely and sure enough she was retracting. Moms with asthmatic kids develop a sixth sense for retraction. Trust me, I'm a Pro!

Retraction is when the body has to use the accessory muscles to breathe. From the outside it looks like the skin sinks in at the base of the neck and also at the rib area when breathing occurs. It means the body is having to work really hard to breathe. So chances are good her numbers will not be good tomorrow. Her fasciculations have also become more pronounced and have spread to most of her upper body and can be seen almost all of the time.

Today she became too weak for the stairs. We moved her room downstairs to the family room and created a playroom in the master bedroom. Actually the Grange boys from our Church came and moved both rooms in about 5 minutes. They were amazing! They must have learned it from their amazingly hardworking babysitter growing up. Oh wait, that was me! Just kidding, well not about being their amazing babysitter...its obviously much to late for me to be updating this blog!

My Mom had a great day Thursday but since Friday morning she has been so weak its hard for her to even walk and lift her feet. She has a hard time keeping her head up and so she walks looking at the ground. Its like shes literally shrinking.

I know I don't even have to ask, but please pray for her.

Around my neck...

I wear this each day.

As a reminder.

Merry Christmas Eve!

Medical update

How do I start? I guess its time to be honest. My case of ALS will go down in history as being a very fast case. Here is how I see it. The ALS clinic is barely keeping up with my changes as their clinic is held every 2 months. They have no clue how fast I am deteriorating.

My muscles are atrophying to the point I am becoming hunched back. I can no longer stand up straight. This makes my shoulders and neck ache constantly.

I can no longer talk. I can't answer the phone, because you wouldn't understand me. Today we had an appointment with the Speech clinic and I now have a mountable computer on order that can be calibrated to read my eyes for typing! How cool is that?

My left arm is dead weight and swollen, but you already knew that. Now my right arm is almost gone and my right hand still works, for the most part, but my right hand is very weak. I can't really write my name anymore! Here it is Christmastime and I can't wrap or unwrap the presents. But guess what? It gave Ashlynn, my 10 year old granddaughter the opportunity to practice wrapping, and she did a great job. Thanks to everyone who has helped me wrap my presents!

My legs still work, sort of. I have to be helped into a standing position from a sitting position. Yep, it means I can't go potty alone anymore, I need some to pull down my pants, pull me from the toilet after my business is done and then pull my pants up again. sounds invasive and it is!The good news is that I have one of those fancy electric wheelchairs on order and it should be here just before Christmas! Watch out world, here comes Hot Grma Silly Caroline, get out of my way!

As for food, I still try to take a few bites of food, but I am getting most of my nourishment through my feeding tube. The good news here is that I have always considered eating a waste of time! Don't get me wrong, I like good food, it's just my motto has always been "I eat to live, not live to eat"

The only really scary part for me is the ability to breathe. At my 1st appointment at the ALS clinic they tested my breathing and I was at 106%. After my feeding tube went in, I was at 59%. Now I am guessing I'm about at 40%. Since the Dr. is on vacation until Dec 20, I can't have it tested again until then. This means my diaphragm is now affected. Meanwhile they suggest I keep my Bi-Pap machine on at all times. Can you imagine sitting around all day and all night hooked up to a machine with a pilot mask attached to your face, smashing the bridge of your nose as it keeps slipping down on my face, with a harness going around your head holding it in place??? I can't even unhook the strap anymore to free myself when I get an itchy nose, therefore I feel like a caged animal.

(A visual of her mask)

Oh, but it keeps me breathing! I decided when I first learned I had ALS that I would NOT be tracheated! Although my breathing is harder, I stand by that statement. No heroics for me, there are a lot of things I am afraid of, and being just a living vegetable is one of them, Heaven is not!

Primary Love

I served in the children's organization of our church for over 25 years. We call it Primary. Recently i served in the 4/5 year old class until I couldn't talk anymore. 2 days ago, the Primary leaders brought the children to visit me for a surprise service project.Here they are singing Christmas carols to me.

Here is their awesome chorister, Sister Stephanson.

I love the children.

Here they are presenting me with a tree and ornaments with their individual pictures on them. That's Garrett Larson giving the ornament he made for me. Each child presented me with an ornament .

I think the train and toy city were a great big hit!

This is my new Christmas tree full of love from the children!

My new Theme song

Most folks look forward to going to bed and waking up to a brand new full of promise, at least I used to do that!

That isn't how it is anymore. I dread going to bed because when I wake up and try to move I sing a song to myself "I'm Loosing it". Yea, I do that instead of feeling sorry for myself. Oh, don't get me wrong, I'm frustrated beyond comprehension, the people I feel sorry for are Lisa and Larry.

Let me tell you what works now. I can see, but that is going, I have cataracts, my right hand works good enough for me to type and wipe myself after using the bathroom, but that is about all, strength is going fast. I can still walk, slowly, not to steady. I can still lift my legs. Hallelujah!

The odd thing happening now is that I'm BORED!! Yep, I am an "A" type of personality with a bit of hyper-activeness in me. So, what can I do now? watch TV or movies and work at being a couch potato, boss others around, when they can understand me. I can still sort the laundry if someone else right sides the clothes first and I can ride in the car. I can still read scriptures and pray. I can get in and out of the car by myself, but I have a hard time doing up the seat belt. I can walk in the store but not push a cart, I can ride on the electric carts in the stores, but I sometimes run into things. And I almost forgot, I can still climb stairs!

Well, thats about all for now, I hope I didn't depress you, that is not my intent, I am just trying to keep every one on the same page. Thank all of you sweet people for your kind thoughts and cards, They really do brighten my otherwise boring day!

Happy Thanksgiving one and all

Yes, its Thankgiving and for the last 4 years most of our entire family has participated in a Thanksgiving Run/Walk to benefit the homeless in Palm Springs.

This year my children and their families were there as well as my sister and her kids and families. Last year was my best time of 50:12 minutes walking. This year I am being wheeled and you can see me, my sister, Pam and my nephew, Peter haming it up on the scene. That is my son Brian and husband in the background, it was a lot of fun, even though I didn't walk!
Thanksgiving was a real family gathering this year! We rented the house right next door to Pam and we put Brian & Kate with their 3 kids, Lisa & John with their 3 kids and Mark and Lisa with Kamden in that house. It also meant a second kitchen, a second refridgetor, a second double oven and sink! We had breakfast and lunch over there, while we had dinner in the main house. Kelly Rogers took charge of being our vacation planner and she did a rockin' job! Brian and Ashlynn were in charge of decorating the kids table, they had a tablecloth the kids could color on and the place holders had each childs photo on it! Kate was in charge of decorating the adult table and it was elegant! Each family had different assignments and it worked out fine.

We watched movies, played Bunco and swam, in all it was a really great time for me. Thanks to all who made those 4 days so fun and memorable.

To top it all off, my dearest friend in the world, Jenny Fernandez came with her husband, Benny to see me! I think I will now die a really happy, satisfyed lady!

C C C machines

This week we had a delivery. A very nice respiratory therapist named Manny came by the house and dropped off 3 different machines I now need to use. A C-pap machine for oxygenating me, a Cough Assist machine and a mouth Cleaning machine for clearing out things that get caught in my mouth or throat.

As I learn to use machines to help me live, I often think that life isn't much fun anymore. I have realized that the only true pleasure I get is when I am doing something for someone else. I know I must now be served, but it is so totally unnatural for me! And I'm getting noticibly weaker. Can you tell I'm going through a rough period right now? Prayers wanted and I hope accepted.

Chapman University

Tonight my niece took me to her disabilities class. I met some really nice people. We talked about my ALS and how it is affecting my life, communication and family relationships. I never went to collage myself, and I am amazed with their knowledge. Chapman is a beautiful private College in the heart of Orange County. I loved the campus and the opportunity to share a little of my story with the class and a super Professor.

They have a piece of the Berlin wall and some incredibly beautiful old buildings. Thank you Kelly!

Pam and Larry

I can't say enough about my sister Pam and my husband Larry. When I called for Pam, she came! She stayed 3 days giving up her own agenda to take care of me and teach Larry the art of tube feeding. Yes, it's an art. Now its "staying Power time". The days where we take it slow one day at a time. I am blessed to have an eternal companion who loves me so unconditionally. He is also my Bishop and he still consults on a part time basis. I am blessed, I am blessed, I am blessed!!!!!

Feeding Tube

As you can see, I went into the UCI Hospital to get my feeding tube put in. Although this is a state of the art Medical and Research hospital, The beds are still not comfortable. If you know me well, you know I am almost always cold. Here at the hospital I can say I was actually hot. The surgeon was wonderful, the nursing staff overworked but nice. I can tell you that I thought I had died and woke up in hell. I lost 3 pounds while there for my 42 hour ordeal. You can't believe how thirsty I was! I didn't sleep the entire time I was there except for short snippets that left me sore and uncomfortable. I came home much more exhausted, thirsty and hungry than I went in.

I had wonderful support while there from Larry and Linda Howson (Larrys sister) Denny Howson and my dearest Sister Pam and my niece, Kelly. Linda wiped my eyes dry, Denny kept an eagle eye lookout while Larry smuggled in the contraband. Kelly gives the most Wonderful neck, back and legs and my sissy knows whats really going on.
I am so glad that's over. I got a great nights sleep (11 hours) and I'm finally no longer thirsty! Part of my swallowing problems and thick saliva was from being so dehydrated. I'm good to go now!

Visiting Teachers

I have to say a word about those unsung heroines of the Church I belong to called "The Church of Jesus Christ of Latter Day Saints" otherwise called Mormons.

Every woman in our Church has a Visiting Teacher or sometimes two. These woman visit at least every sister in our Ward boundaries. I have been blessed by some wonderful women as visiting teachers in my life. I joined the Church when I was 18 and never regretted it.

Today, I have a visiting teacher who is an angel, just like the one before her. Her name is Sherry and she unconditionally takes care of me. She makes sure we have meals brought in on Sundays and Wednesdays. She comes over to my house on Sunday morning to help me dress and get ready for Church because my dear husband is the Bishop of our ward and has early morning meetings. She drives me when Larry can't. She takes me shopping. She schedules ladies to come in on certain days that I choose to help me with the projects I still need to finish.

My last visiting teacher is a working lady and can't serve me like I need, so they changed visiting teachers on me, but, before she left she gave me and Larry a gift certificate to her favorite restaurant.

I believe Visiting Teaching is an inspired concept. I was a visiting teacher for years until I got to sick to serve others. It makes me sad that I can't be of service to my fellow men anymore. I guess its time to be humble and accept my new roll. Bless all the Visiting Teachers who do so much good in this world. They visit the lonely ever month, take care of the sick and cheer up the women of our church like angles do!

My flap has flopped

Today I had the privilege of going down to the Orange Regional Family History Center to train my replacement. She is a wonderful, energetic, and organized person. It was awkward to use my master key for the last time, but I know this is what the Lord wants. She kind of got "baptism by fire" today. Denise is a quick learner, but we were all confused at the loss of 4 order cards today, although it had 4 of us working to solve this problem. On a lighter note, Lucine Fox, Jim Keffer, Denise Sorenson and I were just sitting around talking and Lucine made the comment that she thought "there was a little flap in the throat which kept the air side and the food side separated and kept you from choking", I promptly replied "in that case, then my flap has flopped". We all had a good laugh. Laughter is good for the soul.

I want to tell Denise Sorenson how happy I am that I am turning the responsibility over to her. She may not know it yet, but she will learn all she needs to learn and really be a benefit to those she trains. Bless her heart for accepting this call. I gave you more training than I got when I took over. Make this calling your own. Change all files with my name on it to your name and delete anything that looks personal, use what you can and enjoy the ride!

Lisa here...

I wanted to let you all know that I have stolen my Mom this week so that we could enjoy setting up the Christmas decorations together. It has been a priceless week for me to spend time reminiscing and learning from her.

Her strength continues to slide. We have had a few sad milestones this week. The first is that she no longer has the strength to push herself up onto a stool or get up from the ground unassisted. This has been hard in light of the fact we are decorating but she adapts with a good attitude. She does an amazing knee walk on the ground to the nearest chair or furniture available.

The second milestone is a little harder and was learned a little harder too. She can no longer drive and go out without assistance. Unfortunately this lesson was learned after taking a fall in a parking lot yesterday evening. Her left arm has no mobility left so she could not break her fall at all. Not to mention since she can no longer get herself up she was quite literally stuck on the ground with no cell phone and no one around to help her.

She can no longer lift her left arm and uses a swinging motion to get it where she wants it. Eating has also become much more difficult and we are hoping that her feeding tube will be put in a week from tomorrow.

That all comes out sounding so bleak and yet for us its normal day to day life. She goes about it all with a smile on her face and joking about the changes that have come. Last night we got laughing so hard all over something so silly and we couldn't stop laughing.

That's one of the hardest things about ALS - while her speech slows and her limbs lose strength her mind is the same and sometimes its hard for us to remember that. My mom is not an old lady, nor is she mentally handicapped. She is as smart and sharp as ever, if not more so from the unique perspective that she has. She is amazing and being here with her this week has been a joy and blessing for me.

Sometimes people tell me they don't know how to act and I think the most important thing is to remember to let her do for herself what she can and not talk down to her. Slow down, go her pace, and just take the time to enjoy the process and not worry about being productive. That's what it is about, the joy of the process - not always the ending result.

“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he has been robbed. The fact is that most putts don’t drop, most beef is tough, most children grow up to be just like people, most successful marriages require a high degree of mutual toleration, and most jobs are more often dull than otherwise. Life is just like an old time rail journey … delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”

-President Gordon B. Hinckely

what still works!

I am defineatly feeling weaker, Although my right hand still works well, and my legs are getting me around good, my core balance is getting weak. We all take "getting out of bed" for granted, but I don't anymore! With only my right arm working, its hard to turn over, or fix the bedcovers, and going from a lying position to a sitting position takes core muscles of your abdoman, mine doesn't work so well anymore.

My swallowing is holding its own, but Larry worries about my pills. The big ones are hard to swallow and he worries about me aspirating, so, now he grinds the big pills and I get to take it with chocolate soy pudding. You heard right, Larry bought soy pudding! He thought it read Soup Plantation in stead of Soy Pudding. I ask him what he was thinking and he really told me he thought it said Soup Plantation! I've got to get that man glasses for his 63rd Birthday, which happens to be today. Happy birthday sweetheart, I love you.

A little Coping Mechanism

12 Years of Christmas

My dear daughter came up with this brilliant idea. First she made a spread sheet with all the kids, spouses and Grandchildren names on it. She made 12 years with the ages they would be turning. She left a line for me to fill in of what I Wanted to get them. The spread sheet is in Excell. Now she is shopping with me to get the presents, and we are going to wrap them and put special tags on each one that I sign in advance. So we will make sure that each of the 1st 12 years after I am gone, each one will open a special gift from Grandma Silly. I couldn't do this without my Girly, Bless her heart, its as big as Mt. Rushmore!

How to swallow without choking

I have been to a few swallowing clinics. I have taken the Barium swallow test and failed, sort of. Bottom line, I was chocking quite a bit! Not fun and very scary, especially taking pills. Being the analytical person I can sometimes be, I started noticing the nuances of swallowing.

I realized that as you swallow down your throat, there are 2 ways for food and water 2 go, my tongue no longer works to guide stuff down into the right pipe, so I end up choking.

So I realized that if I just slightly tilt my head left as I take a drink or swallow a pill, it always goes down into the stomach instead of my lungs. How come none of the Dr.s ever told me THAT! I haven't chocked in over a week!

I mean I keep my head level, don't throw my head back, and ever so slightly I tilt my head toward my left shoulder and take a drink. It works like a charm, for now.