Hello Friends from your Sweet Caroline!

Its been a while since Ive said hi.

I am so comfortable at this moment I can hardly keep my eyes open. Ive been drifting in and out of sleep all day. Its been wonderful to feel so peaceful, especially during the evening time. It seems we have finally crested the hill past the anxiety and discomfort I was feeling. I still listen to my music and Harry Potter, I am almost through book #4.

Don't feel sorry for me. Look how good my life is right now!

I have cute boys that sing to me and give me kisses on my mask...


Loved ones who stare at me adoringly and tell me stories of memories we share.


And if that's not enough I get foot rubs all day long.


Don't despair for me...I am at peace!
Love you all!

The beginning of the end

I was completely taken by surprise when we had a light rain this morning. The weather seemed a fitting tribute to the mood of our home. It was somewhat somber but also incredibly peaceful for the first half of the day. My parents had a talk this morning and with my Dads blessing my Mom has decided no longer take any food or fluids.

Hospice came and gave her a catheter and we increased her medications to make her more comfortable. She can not be without her mask for more than a few minutes and we all agree that dehydration is a much more peaceful way to pass than waiting for her breathing to claim her - which is not far off.

This comfort care business is not easy. Her evenings are bad. When we finally got the right medications into her to make her comfortable they had been in long enough to cause nausea. Even with the comfort care nausea medications she threw up - which when you have no diaphragm strength is something like a small burp.

Thankfully we survived the evening and she is sleeping peacefully now after having received a blessing. Tomorrow she will be getting a morphine pump. My comfort care is coming in the form of my Aunt, the nurse, who will be here within the hour and staying with us and guiding my Mom through until the end.

While we have prepared ourselves for this point there is still a sense of disbelief when we find ourselves standing at the threshold. Tonight our hearts resonate with Hymn #128 - When Faith Endures

I will not doubt, I will not fear; God's love and strength are always near.
His promised gift helps me to find an inner strength and peace of mind.
I give the Father willingly my trust, my prayers, humility.
His spirit guides, his love assures that fear departs when faith endures.

Changes

In the last 2 days we have changed my Moms nurse, pain meds, and anxiety meds. We have been busy! Some of these posts may seem mundane and boringly detailed but I am trying to give details for those who are also dealing with ALS. One of the most frustrating things for me as a family member of someone with ALS was having no rough guide as to what kind of process to expect. I know that everyone case is different but I would have loved some idea of what kind of road bumps to expect. I know there are several readers that have found this blog because they have ALS or are the caretaker of someone with ALS. These kinds of posts I hope will help serve as a rough guide for others.

First of why we changed our nurse: I'm sure our first nurse is a great nurse for some people but her personality was not the best for my Dad and I which is really important since we are ones that work with her the most. We asked for a change and the Nurse they sent yesterday was great. She was much more calm, very organised, and very methodical. We are happy we made the change because we need someone that brings us and our home a sense calm. Darlene is the right fit for our family.

Second, we changed her from morphine to methadone. We were needing to go up on the morphine every couple of days and they recommended we try methadone instead because it is longer lasting and it can be given every 8 hours and should keep her more evenly comfortable. We can still use the morphine for breakthrough pain and discomfort.

We also switched her from Seroquel to Lorazepam to treat anxiety. My Mom did not do well on Xanax. We were told that it can make some people act like a mean drunk - she wasn't that bad but it was enough that we didn't want to use Xanax. That's when they gave us the Seroquel which worked but I'm not sure why they tried that one next. In the comfort pack hospice brings they use Lorazepam and it is suppose to work really well with morphine and methadone. They are suppose to each make the other more effective.

Now our only problem is that she woke up this morning with something similar to lock jaw. We have someone coming here soon to check her out. Guess the G-tube is a blessing once again :) My Mom is taking about 1-1.5 cans of Ensure a day and probably around 3-4 cups of water total. But then again the Lorazapam and the methadone are given in the cheek in liquid form so we really need to figure out what is wrong with her mouth.

Her strength has decreased so much that we are almost to the point that she is dead weight when we lift her. We will have to start using the lift we have soon or she will have to stay in bed with a catheter.

Her breathing has changed significantly. As of Thursday night when she first had that breathing attack she has been wearing her mask almost all of the time. She takes it off for about 5-30 minutes but that's about all. Before that she was only wearing it during the night, naps, and very sporadically in between. We have her pressure up to 14.8 now. Manny said he actually has someone at a pressure of 20 so we will have to see what she can tolerate. There will come a point when the pressure is too much that its uncomfortable or she wont be able to keep the seal closed. When that point comes Darlene said we will put her into a very comfortable coma so she wont feel like she is suffocating.

The nurse also heard a wheeze in her lungs yesterday for the first time. That's not a good thing. From what we understand that might be the start of fluid in her lungs. If she gets fluid in her lungs they can not do anything to help her and it will turn into pneumonia. This last Monday the admitting hospice nurse said she might expect to see fluid start in my Moms lungs in about a week and it seems she wasn't far off. I tried to listen today and thought I would be able to hear the wheeze since I am use to listening for it in my asthmatic son's lungs. I could hardly hear anything at all, let alone a wheeze. When I could hear anything it was only when the stethoscope was up near her shoulder blades.

It seemed for a time that my Moms lack of strength and lack of appetite might actually claim her life before her breathing did. With the changes we have seen in the last couple of days that doesn't seem to be the case anymore.

We feel very confident that with Darlene and hospice's help that we will be able to make it through while keeping my Mom as comfortable as possible. My Dad has been a hero in the last week. He is even more patient and more loving with her. He cares deeply about how she is doing and is methodical about her, her care, and he is advocating for her. It is very touching to watch.

Thank you all for your prayers and kind e-mails. I am sorry to say that we have been horrible at thank you cards or responding. Please know that each comment, letter, e-mail, meal brought in, soda delivered, babysitting act, and countless other little act help lift our burden and make it feel lighter. All the movies, games, books on tape that have been lent have done so much to help keep us all sane. Your smiles and hugs are making it possible for us to make it through this process. I often think of Moses in Exodus 17.

11And it came to pass, when Moses held up his hand, that Israel prevailed: and when he let down his hand, Amalek prevailed.

12But Moses’ hands were heavy; and they took a stone, and put it under him, and he sat thereon; and Aaron and Hur stayed up his hands, the one on the one side, and the other on the other side; and his hands were steady until the going down of the sun

Our sincerest thanks to all of you for keeping our hands steady!

This might be considered my very first blog post....

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.

Hospice

7 months ago we found that our family was taking a voyage aboard a ship and we were not just going for a ride we were going to be the the crew. There was only one problem - none of us has ever sailed before. We voraciously studied charts of the waters we would need to navigate through trying to become familiar with what we might encounter. We read the journals of others that had sailed this route before and scoured them for tidbits of knowledge that might warn us of hidden dangers. But the sea is unpredictable and with variations in tides and weather conditions each crew must face the unknown as best they can. And with inexperienced crews there naturally comes navigational errors, improper training, poor judgement calls, and worst of all fear. All of this makes the journey so much scarier and that much more perilous. We knew that our ship was nearing the most treacherous waters in our journey in the shallowest waters with the most hidden wrecks, rocks, and unexpected sandbars. We were scared and so we studied harder and prayed more.

And then suddenly a Captain boarded our ship. Our captain has navigated these shallow waters many times before and helped many scared first time sailors make it through where our ship must also go. They know what hidden traps might set our ship off course or run our ship aground. With our new Captains experience, confidence, and patience our crew feels a greater sense of calm and we feel more confidence that we can see this journey through safely.

Hospice is our Captain, and we are elated to have them on board.

Why we call her Grandma Silly!

Powerful kisses from The Robers on Vimeo.

Letters of Love - From Pam

We received a special e-mail this week from Pam (Fletcher) Nickerson who was one of my Mom's former Mia Maid's (part of the Young Woman's Organization in our church comprised of girls ages 14-15.) She gave me permission to share it with you because we loved it so much...

Hi Sister Rober,

I checked your blog today and I am sorry that your condition is progressing so rapidly, but happy that you are surrounded by your family and that you had a great Christmas. Lisa mentioned in one of her updates that while you know what awaits you on the other side of the veil is wonderful, you were feeling anxiety about the process of getting there. I was reading The Silver Chair from the Chronicles of Narnia to my son tonight and I read a passage and you popped into my mind, so I thought I would share it with you.

In this book Jill comes to the world of Narnia and meets Aslan on a mountain. He gives her an assignment, the signs she needs to know to fulfill her journey, and tells her that he is going to blow her from the mountain to the kingdom of Narnia. This is the end of their conversation and the beginning of her journey.

“…Remember the signs and believe the signs. Nothing else matters. And now, daughter of Eve, farewell—“

The voice had been growing softer toward the end of this speech behind her. To her astonishment she saw the cliff already more than a hundred yards behind her, and the Lion himself a speck of bright gold on the edge of it. She had been setting her teeth and clenching her fists for a terrible blast of Lion’s breath; but the breath had really been so gentle, that she had not even noticed the moment at which she left the earth. And now, there was nothing but air for thousands upon thousands of feet below her.

She felt frightened only for a second. For one thing, the world beneath her was so very far away that it seemed to have nothing to do with her. For another, floating on the breath of the Lion was so extremely comfortable.

Sister Rober, I cannot thank you enough for the difference you made as my YW leader. I believe that the Lord will pull you gently across the veil. You and your family are in my prayers.

Love,
Pam Fletcher Nickerson

This e-mail came at the perfect time. On Thursday my Mom asked us to make her more comfortable. She is ready for heavier drugs to help her sleep more and hopefully feel a little less. We let the speaking device people know that they either ship it on Friday or they can cancel our order because Hospice is coming on Monday.

So that is where we are at. Hospice comes tomorrow at 1:00. We don't really know what to expect or what measures they will take to give her more comfort. We will let you know tomorrow. Until then we are going to read this passage again and again:

She felt frightened only for a second. For one thing, the world beneath her was so very far away that it seemed to have nothing to do with her. For another, floating on the breath of the Lion was so extremely comfortable.

Award of Merit

This is Larry checking in:

First I want to thank EVERYONE for all of the concern, prayers, cards, letters, blog comments and e-mails. One of my favorite times of each day is to sit with Caroline and read her cards, comments and e-mails to her. Some of these sessions require a bit of Kleenex to make it through the tender moments. We are in our seventh month of the journey. I can't say it enough that I wish everyone could have the chance to be with Caroline. Her courage, faith and attitude are amazing and go along way to making my days easier. I have told several people that I will not look back on these months as the worst of my life but just the opposite as some of the best. Don't misunderstand, I would of course rather not be in this situation but the Lord has given our family a trial and we are trying our hardest to make the best of the situation. We still have moments of tears and frustrations but at the same time there are still smiles, occasional jokes and many tender moments.

In December of last year Caroline received an Award of Merit from the California State Genealogical Alliance. I am so proud of her and her accomplishments in this area. When the kids finished high school she took up the profession with a passion that only those who know her understand well. She became a well respected teacher and researcher. I can't tell you how many times I have spent some of our vacations in cemeteries, city halls and genealogy libraries. I have seen her drive into a strange town and leave two or three days later with several newly discovered gems of information and new friends and relatives forever after the experience. She can tell you off the top of her head all of the names of my and her relatives several generations back. I wouldn't trade these trips and memories for trips to more exotic destinations. I know my ancestors so much better because of these experiences. I have stood in the Cathedral in Canach, Luxembourg where the Robert family attended church before coming to America. (The final "t" was dropped when they came to America.) I have stood in the dirt of the Rober farm at Plymouth, Indiana where my grandfather who I knew was born. I have met Ernie Rightley who still lives on the farm property and heard many funny stories about all of the Rober children who were born there. I have had the same experiences with her on trips to help with her ancestors.

So with that background of what special times these genealogy trips will always have in my memories, here are the awards she received. I have also attached a picture of a humorous headstone we came across in Key West, Florida that I don't think will ever be topped in any visit I have to cemeteries in the future.

Thanks to all again for all your love and support.

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.

Letters of Love - from Lisa

This letter is from Mark's wife Lisa. To avoid the confusion of multiple Lisas in the family my Mom nicknamed Marks wife "Sweet Buns" right when they got married....I have been jealous ever since :)

Hi mom,

I just wanted to tell you that even though it seems like I haven't seen you in awhile, I think about you and pray for you multiple times a day, and am always hoping you are having a good day. I miss you, and hope to be able to come out this weekend. Kam had been having a really hard time with his routine being off with the Christmas break and everything, and was really acting out, but is getting better now that school has started again and I have been really consistent.

I am glad to hear you have some good nurses caring for you now, and mark was proud that you really enjoy the Harry potter books he got you to listen to. I love you, and still so admire you for how you are handling this trial. You are such an example of what a person can do with strong faith in the Lord, and how to put your life in His hands and trust Him with whatever he does with you. You might have already heard this story --I heard it from Mark -- comparing how God molds us into the people he wants us to be like a sculptor chips away at rock or clay to make a sculpture. God chips away at us a piece at a time, and sometimes we say, "ouch, that hurts," and we don't understand what the point of that was, or even what it is he's making in the first place, but we have to understand that he can see what he's making and knows exactly what he's doing. He loves us so much that he is not content to just leave us be and say "that's good enough;" He is going to keep at it and, along with our faith and trust, make us into the most beautiful things we can be. He sees the amazing potential we each have to be great, and helps us, sometimes in ways we don't understand or like at all, to slowly mold into the amazing, beautiful creations he always intended us to be. If we let Him. And you, mom, are letting him, and we can all learn from you. It seems that Heavenly Father is pleased with the beautiful person he's helped you to become by chipping at you all your life (and I know he's taken some pretty big, painful chunks out of you too) because he wants you home soon to be with Him and to give you rest from all the sculpting.

"And it shall come to pass, that the spirits of those who are righteous are received into a state of happiness, which is called paradise, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow" (Alma 40:12). I know you have no doubt in your mind and heart that that is where you are going. We are all going to miss you so much, but we understand, and in large part because of how you have handled this and your example, that this is what is meant to be, and this experience is God's way of molding not only you, but all of us too, into the people we have the potential to become.

Thanks for who you are and for leading our family in the direction toward happiness and peace. Thanks for being a strong, steadfast, faithful mom in raising your family right even when things were very difficult for you and you didn't understand what the point of all your hardship was, but kept putting one foot in front of the other and never let your pain get in the way of raising up a righteous family. This is your legacy to us, and it will be felt for generations, and we are so grateful to you for that example that we will always have close to our hearts. I heart you, and keep holding on.

I'll see you soon.
Love,
Sweet B

Letters of love - From Kelly

(Kelly is the daughter of my Moms sister Pam, my Moms only niece)

About a month ago while I was sitting in Sacrament meeting, I opened my scriptures, but stopped to see a hand-written note in the front cover.

For Lovely Kelly,
As you read and ponder these Holy Scriptures, open your mind and heart so that our Heavenly Father can guide and direct you in the way you should go. As I have watched you grow into a beautiful young woman, and choose the Right most of the time, it doesn’t surprise me that you are making this choice now. Remember that the Church of Jesus Christ is not just a “Sunday Church”- It is a whole new way to live each day. As you do that you will grow in wisdom and other ways you never imagined you could. I love you and I’ll always be here for you.
Love Eternally,
Aunt Caroline

As I read the words my Aunt Caroline wrote for me when I was baptized at 19-years old, I cried. I thought back to all the memories I have had with her and short amount of time we have to still make new ones. I thought about her love and support she has shown me as I have grown a testimony in the Church of Jesus Christ of Latter Day Saints. She supported me when I was baptized, when I had a civil marriage, and when Brian and I were later sealed in the temple. Although she is not my mom, Auntie would be the stand it when I needed it. She was at my Girl Scout events, went on field trips with my class for school, came to listen to me speak at church and was my temple escort while taking out my endowments.

When I got home after church I went to my bookcase and started pulling out every church book we owned. I found numerous books that she gave to me with personalized messages. They were filled with Auntie’s strong testimony of the gospel and her love for me. When I opened The Holy Temple, by Boyd K. Packer, It read:

To Brian and Kelly,
Congratulations on being a forever family now. Uncle Larry and I pray for your eternal happiness. Vow from this day forth that you will never-ever be without a worth Temple Recommend and that you will go to the Temple faithfully every month, at the very least for the rest of your marital life. The Temple has made Uncle Larry and I the people we are today. There is no other light like in the temple to guild you through your lives.
My Eternal Love,
Aunt Caroline

Watching her struggle with this debilitating disease and see her strength through everything will be with me forever. Her life has been a great example to me about living the gospel, serving and loving.

I am at that point in my life when I am critically evaluating who I am and who I want to be. As I am identifying the gaps in my life I am filling them with character strengthens from many strong, independent women I have known. The list is endless of the ways I will incorporate Auntie into the rest of my life as woman, wife, and mother.

Update

I just returned from Utah and in those 6 days my Moms overall condition decreased dramatically. She doesn't type on her ipad anymore instead she has been drawing letters with her toes on the ground. There has definitely been a decline in her breathing. She wears her breathing assistance devices more and her BiPAP machine is now at a pressure of 14. The respiratory therapist confirmed to my Dad that she is officially the fastest case he has ever seen.

We did get some really good news. The first hospice company made a mistake and we actually have around 70 days of hospice coverage! Grrrrrr! That makes a huge difference! She should have a speaking device shipping this week and we are waiting for that to come before calling hospice in. If we call hospice in before we get that device the insurance company wont pay for it. Since communication is our biggest challenge we are waiting for the device to come and then we will call hospice. We don't necessarily need hospice because we have the comfort pack medications already, but it will still give us peace of mind to have hospice on board.

The biggest change is in her strength. She has very little left and she seems listless now. She hardly seems to have the energy to nod her head yes or no to our questions. She is much more uncomfortable and she has a lot more anxiety; which is a normal side effect of her breathing limitations. We are using the comfort pack anxiety medication to treat it and today seems to be much better than yesterday.

Weak is the best description for her overall condition. Not just a physical weakness but a deep weariness seems to have fallen over her. She doesn't seem to have the same sparkle in her eye. Smiles that use to come frequently and easily, are now fewer in number and much harder to come by. The one thing that always brings a smile to her face are the letters and comments from all of you. One of those in particular brought a smile to her face today. One of my Moms readers has a secret....one that lasts around 9 months long!!! A big congrats from my Mama to those soon to be parents of a little sesame seed sized secret. Don't worry your secret is safe with her - even if she wanted to spill the beans she couldn't :)

Caroline the Party Animal!

Happy belated New Year!

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.

If you thought the sled in the sky was crafty check out what Brian can do with 1 trip to Home Depot and 2 hours:

A jacuzzi lift for my Mom!

Right before she had her feeding tube inserted she went in the jacuzzi with my Aunt Linda, Uncle Denny, and my Dad. My dad said she was giddy because her weakening muscles had a lot more control of her body in the water. She had to wait 6 weeks after her surgery to go back in while her tube healed. By the time those 6 weeks were up her legs were too weak that we would not have been able to get her out. That is when Brian got brainstorming.

The lift worked perfectly. She sat in the chair and then John and my Dad rolled her over the water and cranked the lever to lower her into the water. She loved being in the water but sadly she had lost so much muscle mass that her body would not stay down. If she tried to sit her legs, feet, and abdomen would float up on their own. The weakness in her muscles, especially her back and core, made it impossible for her to compensate her weight and that made being in the water a little scary for her because she felt so out of control. My Dad held her on his lap though and that worked really well. When she was ready to get out we wrapped her in a hot wet towel to keep her warm. They lowered the chair back in, she sat down, and then they cranked her up and rolled her back.

Perfect!

El Dorado Vocal Ensamble

With the busy holidays I never finished writing about our Christmas Eve other than the sled in the sky. There were other cool surprises too! My cousin Kelly gave my Mom a present and inside were jingle bells. She told my Mom she had to shake them for her surprise and when she did the El Dorado Vocal Ensemble stared singing Jingle Bells and came down to carol for my Mom.

I expected them to be good...but I was blown away!

The harmony and blending of their voices was breathtaking!

And there were only 6 of them! They were A.M.A.Z.I.N.G!
We were transfixed and my Mom especially enjoyed every minute of it!


Taryn is a young woman from our Ward and is a part of the group. It was really neat to have her there to participate.


And when they sang Away in a Manger....
Its hard to describe. It was so beautiful and combined with the words, there was a serene feeling of reverence...

Sleep in Heavenly Peace.

Sleep in Heavenly Peace.

Thank you so much for taking the time to bring such a sweet tone to our Christmas Eve!
You are truly stunning!

Comfort Care

We had my Moms appointment yesterday and here are the results compared with her numbers from 3 weeks ago:

Forced Vital Capacity: 40% three weeks ago, down to 25%
Negative Inspiratory Force: 28% three weeks ago, down to 12%
Sniff: 32% three weeks ago, down to 22%

They were right about where we expected them to be after seeing the changes in her over the weekend. Everything we talked about with the nurse was for comfort care. I like that term. It brings to mind peace and compassion. The head nurse at the clinic told us she will never forget her first appointment with my parents. She had never sat in an initial visit with a new patient and spouse where they seemed so accepting of the diagnosis.

It is true, my Mom is not afraid to die. That does not mean she is not afraid. She is terrified of the process to die. And honestly, who wouldn't be? I cannot imagine how heavy the burden would be to know when and how one would die. When I really take the time to think about how difficult that would be my respect grows even more for the way my Mom has handled this.

Nothing in our life changes except perhaps how we will be defining our days. Good days will be days where my Mom is comfortable. She use to love getting out and doing things but it is just getting to hard. Her body is trying to conserve its limited energy for the essentials - like breathing. She enjoys sitting and listening to music and relaxing with one of us by her side. She and I had the best night simply sitting and hanging out.

Everyone tries to ask in a roundabout way what is coming, but the fear of the unknown is usually worse than the actual knowledge. As her ability to breathe decreases she will wear her BiPAP and Sip and puff machines more often because they will give her relief from feeling depleted of oxygen and will temporarily relieve her of the exertion that it takes to breathe. These are not life sustaining devices, despite what we had previously been told about the sip and puff. There will come a point where the machines will no longer be effective enough on their own to keep her from feeling air hunger. That does not mean she will feel it or ever be aware it is happening - we will not let that happen. We have in place the medications needed to relax her body and mind to eliminate any awareness of those sensations. She simply sleeps through it. As her carbon dioxide levels continue to climb her body will continue to be more sleepy and relaxed. She will slip deeper into her own deep sleep and it will be incredibly peaceful for her.

Don't get me wrong, we are by no means there! Right now she is happy and alert. We still laugh and enjoy her companionship during the day. While before it was her family restricting visitors to preserve her energy, she has now requested to not have visitors. Our lives are a fluid routine that provide her with a feeling of peace and stability. While visitors are sincerely enjoyable it is the difficulty of falling back into her familiar routine that is the problem. When the balance is interrupted it can cause us all anxiety. Even the anticipation of un-routine things, like her Drs Appointment this week, made it so she could not sleep the entire night before. We appreciate your understanding and help in maintaining her feelings of security that the consistency of her routine provides.

We also recognize it can be hard to feel cut off, even for her family when we are away. A good friend from our Ward, Amelia has been a heaven sent resource for our family. Her Dad passed away from ALS and they used an instant message system that allowed friends and loved ones to send messages that would pop up on the screen and could be read throughout the day. My Mom said she would love something like that and so we have enlisted Brian and Mark's techy talents to figure that out. When they have it all set up we will get instructions out on how to send her messages. You can still send them to my e-mail and we will read them to her. If you really want to make her day - comment on her blog. No really, she loves to see that people stopped to check on her. Even if it is just says hi. If you don’t have a Google account and it is making you choose anonymous, just sign your name.

We have a lot of things to catch up on, some events are still from Christmas. Stay tuned I have posts set to go up automatically since I am writing this post from my red rock home here in UT where I plan on playing nonstop with my boys. My Aunt, Mark, and Brian will all be with my Mom over the weekend and I will be back next Monday evening. She is in good hands...but I still wanted to wish her goodnight!

Dear Momma,

I miss you already but it feels good to be home. I forgot I still have my Christmas decorations to take down :) Oh well, they may be up until this summer because tomorrow we are chillin' in our jammies and letting the house be a wreck, even Caleb is playing hookie. Our drive was good but I didn't want to stop and by the time we hit the gorge the kids were done and really wanted to get their point across!

I brought your Phantom of the Opera CD and just before I hit insanely crazy I put it on and turned it up loud. I mean L-O-U-D. As in drowning out any possible noise that could escape the back seat. Don't worry only the front speakers were on. I sang on the top of my lungs. I looked in the review mirror after a few minutes expecting to see crying tear streaked faces, and instead I saw three wide eyed, open mouthed, quite boys. I can’t decide if their shock was from the knowledge that there is something in this world louder than them or from my awful singing! Caleb loved the main title so much and he was pretending to play an imaginary guitar and yelled I love ROCK! Don't worry we will be working on their cultural sophistication and won’t let you down.

Do you remember when we went to the Phantom? We went twice but I especially remember the time you let me wear your black dress with teal sequence. I felt so grown up. Thanks for making sure we had all sorts of experiences growing up. As Caleb would say - you ROCK!
Night Night! Love you!

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.

Letters of Love - From John

A quick preface by Lisa: John is my husband who right now is driving back to Utah alone - again. He left behind this beautiful letter for my Moms blog. He has been the most amazing support for me during this trial. I cant even type this without tearing up at the selflessness he has displayed over the last few months. He has driven countless miles only to get here and watch all 3 boys full time so I can care for my Mom with my undivided attention. He has spent over a month doing his own laundry, cooking, cleaning, and caring for Caleb full time while working full time and trying to finish a very loooong honey-do-list I left behind. Not only has he not complained - he does it gladly with love. I am grateful for him and my love and appreciation have grown more than I could have imagined during this time.

When he walks in from being gone my Mom tears up as she tries in her own way to thank him for his sacrifice. I know she appreciates him more than she could express - even if she could express herself :) John has a special way with my Mom. He can tease her and she can not get mad at him for anything. Maybe that's because he gives her the best hand massages. She has always seen the best in him and I don't think I have ever heard my Mom say a negative thing about him. Her unconditional love and support have been a blessing and source of comfort for him.

Everyone tells me how wonderful they think it is that I'm here caring for my Mom but without John it would not be possible. He is the real hero and we are grateful for him.


Dear Mom,

I believe it was President Hinckley who talked about not being the weak link in the family and breaking the chain.

Lisa and I have talked a lot about how you did break the chain, only it wasn’t because you were the weak link, it was because you were strong. It’s pretty common knowledge that you had a tough childhood, but if it weren’t for you and your attitude toward the gospel & toward having a strong family, a bad chain may have never broken. Now it’s up to Lisa and I, Brian and Kate, Mark and Lisa, and all of our kids to take and use all of the good and positive things that you’ve taught through the years and pass it on to the generations that follow.

You’ve been a good link that broke a bad chain and you’ve been a strong link that began a new, good, strong chain and I’m proud to be a part of it. Thanks for being who you are to everyone around you and thanks for raising my wife to be the compassionate and loving person that she is.
I love you,
John

Is this not the most perfect picture of a stereotypical mother-in-law/son-in-law relationship!?!

:)

*Many people have sent wonderful letters of love to my Mom through my e-mail. I print them off and read them to her and tuck them in her special box where she has saved all of the letters and cards she has received since first getting sick. If you want to send my Mom a letter you can e-mail me at johnlisa02@gmail.com. It has been fun to sharing some letters from her family here on her blog. If you would like me to share your letter here on her blog please just let me know and I will post it for you.

Medical Update

Physically my Moms body is very weak and we continue to see her strength decline day by day. She has lost almost all use of her right arm and hand. She can no longer grip with her right hand which means she can no longer write. We are getting along okay with the use of her ipad and hopefully the people responsible for her speaking device will get their act together and actually submit it to insurance - a whole month later! Grrrrr! Not having a grip is also making it extremely difficult for her to hold the wand for her suction machine which is complicating things. When I have tried to help her maneuver it I trip her gag reflex....so we are still working on that one! So far she has been fine driving her wheelchair by placing the joystick in the hallow of her thumb and pointer finger. If that eventually becomes to hard they can adapt her wheelchair to be maneuvered with her chin which is pretty amazing.

When she was first diagnosed they put her on Rilutek which is the only drug used to treat ALS. "Treatment" for ALS means maybe extending life for 3-5 months by slowing the progression. At that time she said she only wanted to take Rilutek until her quality of life was getting poor and then she wanted to go off of it. This week she made the choice to stop taking it.

As for her breathing its hard to tell if there has been much of a change. If she is changing it is definitely not as noticeable as it was before. Although she is not attempting any physical activity anymore so we just might not be able to tell. Today we did increase the pressure on her cough assist machine to make her cough still effective. Her BiPAP machine has been at a pressure of 12 but today she felt like she wasn't getting enough air to be comfortable so we bumped the pressure up to 13. She has an apt on Tuesday afternoon at the ALS clinic and they will perform another Pulmonary Function Test. That will give us an indication for how much lung capacity she has lost over the last 3 weeks.

She got a sip-and-puff machine right before Christmas. A sip-and-puff machine is a non-invasive ventilator and can sustain her life indefinitely by breathing for her. The upside of the sip-and-puff machine is that it can be used as a portable BiPAP machine. This will allow her to leave the house and keep her oxygen saturation levels up. The down side is that it is a ventilator and by definition can bring heavy choices with it. While there are many people who choose to use ventilators it just wasn't what my Mom wanted and she has put that in her Advance Directive. For now she doesn't wear it very often, but that could change in the future.

She still has some use of her legs but even their strength is diminishing. She is still able to do the stairs with assistance as long as she has not taken Xanax. For the last few weeks she has been taking a small dose of Xanax some evenings to help her relax and get rid of anxiety. It makes her feel better but it also makes her body go limp and getting her up the stairs is not easy!

The good news is that she is no longer having the sympathetic nerve pain in her arm and shoulder. Once she stopped trying to sleep on her side and got use to the hospital bed, her pain in the night diminished. She still has aches and pains from her muscles deteriorating but we can give her something and it works to take that pain away. Its nice that when she is losing so much she is also losing the bad things :) We will celebrate that loss for sure!

Emotionally this has been a rough week and while we expected it, its still hard. We are having to evaluate the necessity of caretakers as well as if, when, and how long I will be going home for. There is nothing easy about these decisions and its made everyone a little bit edgy. The Holidays are over and its one more milestone that has flown by. There is nothing we can do now but give ourselves time to find new footing and meaning in all of this.

I know we all will, we just need time.

All our Grand kids in their Christmas Jammies....

Watching my boys tease and taunt their children just like Larry use to...

The mad dash to see if Santa came....

The best gift I have ever given the boys!
A RC Syma Helicopter!

Bunco tournament complete with white elephant prize exchange!

Ending the night with the Nativity Story.

It was a wonderful Christmas!

Sled in the sky

If you ventured into Eagle Hills on Christmas Eve you were likely delighted with the amazing sled flying through the sky in our cul-de-sac!

A few weeks before Christmas Brian and Mark started talking about making some sort of amazing display for the cul-de-sac. After coming up with a design for a sled in the sky they went to work to find the perfect sled. They came up empty so Brian decided to just build his own...hes handy like that! With a little personalized vinyl, added by Kate, it was perfect!

They started putting the sled up on Wednesday and had a few snags along the way. When it was finally up and running the cable for the lights decided to snap after 1 run! We were a little worried the boys might snap at this point too! They had put so much work and time into it, not to mention the heart they had put into it. It was truly an expression of their love for our Mom and you could tell they wanted more than anything to make her Christmas Eve memorable and spectacular.

Mark made a last minute frantic run to the hardware store which was (thankfully) open on Christmas Eve. They went back to work and worked tirelessly until the sun was down. Bears and lights were added to the sled...


Brian tied the sled line to the back wheel of a bike he had attached to a stand and painted red and white for Christmas. They had designed the sled to be powered by grandkid power!


They were making the last adjustments and decided to just string it up because it was getting too late. It went up flawlessly! The sled ended up exactly on top of the lights and looked like it was riding down on the lights. It was amazing!

The kids loved it and we caused a few traffic jams as people stopped to watch. No one loved it as much as our Mom who was giddy with excitement when she first saw it go!

Later that night she was able to drive herself up the street in her electric wheelchair that had been delivered that morning and she stomped her feet with delight as she watched it coast down the line.

The sled combined with a campfire in the driveway, the kids handing out candy to people passing by, glow sticks, and a visit from my Moms cousin made it a wonderful Christmas eve.

Nice work boys!