Wednesday, September 30, 2009

Wednesday September 30th

I had two incredible night angels again. They said Mare had a fairly good night. Although she had some pretty bad intestinal pain last night. The hospice nurse came out late last night just to make sure it wasnt something serious. We removed the feedings for a while to give her stomach a break. She woke up with quite the headache and after some, ativan, methadone and dilauted, she was comfortable and slept quite a bit. Carmen rubbed her feet to relax her and Eileen gave Sadie a bath for us.

Mary Rebar from the ALS association dropped by on Tuesday. We had a nice chat while mare was sleeping. She took a number of things that mare will not be using any more. The ALS association has been an incredible resource for us. Whatever we needed, they would do their best to get so we did not have to purchase it. In taking those things away, it was another step in the process of this disease. Another reminder that this disease does not get better. It was also sad to think that those items are needed by another family. Another family has to travel the path that ALL of us have been traveling. We talked about the positive research strides that are being made. Unfortunately, it will not offer much hope for those with the disease now, but for those who might get the disease 10 years from now, HOPE lives.

Grandpa and Kay came back on Tuesday. I had three dental appointments in two days and they were there to look after mare. They also were here today to give me a break to play some tennis in the afternoon. Im glad Mare hung on while they were away. They have invested a lot of emotions, time and energy helping us take care of Mare. I know they want to be close when Mare takes a walk on the other side. I want her to be set free. Set free to run, walk and not be trapped in that body. If she goes a while without ativan, she gets that trapped in her body feeling. We are considering upping her ativan dosage. She still is on a very low dose compared to what she could have. She seemed to be open to the idea. We will talk to her nurse tomorrow about it.

We had a real nice visit from Mrs. Lewis, brians leadership teacher. She is an outstanding educator. Good teachers are all about building relationships. She does this with ease with her students who respect her a great deal. I'm so glad she is there at the school to be there for my son.
I want to apologize to all those who have called or emailed but have not got a response from me. I am mentally tired and dont have the energy to respond to all my wonderful support team. Please now i am strengthened by each contact from you.
the days are all melding into the same routine. We try to keep her comfortable. We watch. Another ALS care giver referred to it as a death watch. Hard to write those words but that is where we are at. We wait for her ordeal to be over for her. We wait together, not wanting to lose our precious mare. our brave, courageous Mare. I have been told by so many that Mare's struggle has made them appreciate life all the more. They are better because they have known her. That will be her legacy. In death, she will have taught us all how to live.
May she have a restful and peaceful sleep.

Tuesday, September 29, 2009

Tuesday September 29th

Last night was pretty weird. Sitting watching our wedding video and seeing how our lives have changed so much. Seeing my mom again who passed many years ago. Seeing Marilyns family and noticing 4 of marilyn's family who have since passed of ALS. Her mother, brother an uncle and a cousin. We cried a lot. I sat as close to mare as i could in that hospital bed. She told me the other night she woke up so cold. She wanted to roll over and snuggle next to me on the floor but she couldn't. She said it again for emphasis. I couldn't roll over. More tears.

My wife was and is so beautiful. The first time i met her, one of the first thoughts i had was what a great mom she would make. Talk about being perceptive. On top of that she was smoking hot. We dated for 5 years before the big day. I was so nervous. I did not like being the center of attention and it showed. After Mare's dad gave her away, we walked toward the Pastor and then he walked away. I did not know it but mare had a little surprise for me. She sang to me. We spent the night at the Westin in seattle. We drove to Vancouver BC the next day to fly out from there to Hawaii. Turns out, i had ordered tickets and then changed travel agents. All the confusion had caused us to actually cancel our reservations and we had none and had lost our money somehow in the travel melee'. Luckily we had a friend who was a travel agent who got us tickets out of seattle and our money back (i think - or maybe it was gpa who foot the bill) but we made it. Quite an auspicious start to a wonderful 24 years.

We enjoyed reminiscing and being close. I miss that. A caregivers role of an ALS spouse is so different in some respects of being a spouse. I'm doing things i never even dreamed of. For better or worse right?? We had a good night. I did get us some italian and had to add a little tomato sauce to mares so she could eat her spaghetti and marinara. She loved it. I loved mine. We loved just being toghether. I have trouble thinking of life without her. But im going to have to eventually. Sometimes i start to go there and feel guilty. Have i told you i hate ALS?

Cori and Pat gave us both a good nights sleep. it was a good anniversary. Thanks for all the gifts, cards and flowers. We love our Army!

Monday, September 28, 2009

Monday September 28th

Happy anniversary! Those were the words we exchanged this morning.
She was very cold again. I went and put a towel in the dryer and on her under her blankets. She was a happy girl. Very quiet here today. She is sleeping a lot and I'm just sitting here enjoying the solitude. It has been so busy with people all around that i never have a chance just to be in my own home.

We will have a quiet dinner tonight together and then watch our Wedding video. The masseuse will be here today also. Its almost like we are at a spa or something for our annivesay. Ok , that might me a little stretch. Thanks for all the happy anniversary gifts and kudos.

I will have two night angels again after a few days of pulling night duty myself. Happy anniversary to me! My gift to mare is she doesnt have to listen to me snore tonight. May she have a restful and peaceful sleep.

Sunday, September 27, 2009

Sunday, September 27th

Mare had a difficult night. Maybe that was because i was her night angel again. But she woke up early am to complain of difficulty breathing again. When this happens, she is very calm and matter of fact. I think that helps me in helping her because she remains so composed about the whole thing. I had to give her medicine 3 times in about 3 hours. This is unusual and she slept well into the late am. Tabitha and Madison came back to check on their Mare and Kathy was back up to love on her sister and me. That allowed me to get out and play a little tennis. Kathy and Gina have both been very diligent in spending time with their sister. They have spent the night several times to help us out with coverage.

Later in the afternoon, Lisa from across the street came over and mare wanted to get out of bed and get her hair washed. Apparently, she has a hot date tomorrow and wanted to look good for it. Kathy Larsen came by just in time so the two Kathy's, Lisa and I gently got mare out of bed and into her chair for the first time in 2 weeks. We used her battery and inverter for the first time. Mare was mobile! However, It was difficult for mare and was quite painful. She has moved so little in two weeks that any big move is going to cost her. Once into the chair, she very much enjoyed the hair washing and especially the brushing from Lisa and hitting just the right spot with the brush :) Brian fed mare her Popsicle tonight.

I am mares lone night angel again. May she have a peaceful and restful sleep.

Saturday September 26th

I was mares night angel last night. Mare did not know that angels snore. She was up several times for different things including trying to get me to shut up.

Tab and Madison came over this am. For those that dont know, Tab is my sister in law and Maddie my niece. Mare had a little leak in her feeding tube so we spent the morning fixing that and changing her sheets. Madison wanted to lotion mares feet. She did so for at least 45 minutes. Mare was in heaven.

Mare had a good day. Looked good and in good spirits. You would never know she is involved with Hospice. We had a nice visit from Patti Shanader and her son anthony. We laughed a lot. She started the methadone today. Very low dose and it seemed to go ok.

The sisters participated in the ALS seattle walk today and came up afterward. I got to get out and hit a few tennis balls and they had a good visit. Kathy and Gina stayed for a while and loved on Mare like they do. My friends Dave and Becky Welch brought over dinner that we will have Sunday. Uncle Rick made Thai food that was unbelievable. Lauren came over for a while to check in on her mom. She also cleaned up for me. Thanks lolo.

Brian and Tia went to homecoming. Tias folks were over for a visit and pictures. Mare was in her happy place. She just loves special events like this and being a part of them. Brian woke up this am and freaked out because he had forgot to order Tias corsage. Mare had already taken care of it courtesy of our friend and neighbor lisa who works at a florist. Even in this state, she is still doing mom stuff. My wife is amazing.

May she have a restful and peaceful sleep.

Saturday, September 26, 2009

Friday September 25th

I thought it would be very emotional. It wasnt. I stood there with Lauren and we watched our man, Bubba, in the homecoming parade announced as king. Mare wasnt there. She was home in bed watched by carmen and lisa. Maureen Stanton asked me the other day if i had read ann landers about caregivers and grieving. I had and could relate. Lauren had expressed similar sentiments to what a widow of ALS told me about her husband. The day they got the diagnosis was the day she started grieving for the loss of her husband. Mare is still here but she is not here. When i look at pictures of even a year ago, that person seems to no longer exist. I miss her. Yet she is still here. Twilight zone......

For those of you that have signed up for anything to help us you know Carmen. She has been our point person since the beginning. On top of that she is always there to lend a hand. She quietly does what she does with no desire to be recognized. She is the best example of being a servant that i can point to. If you talked to her you would not hear from her all she has done for us. She does it and expects nothing in return. It is enough just to do for others. She came over today just to give me a break. Her husband John is a lucky man. He married up. Here she sits quietly watching over her friend.

marilyn had a tearful day. She really wanted to be there tonight. She told me she wanted to be the homecoming kings mom. I told her she is. She is being more accepting of increasing doses of meds. Her humor still triumphs her situation. Today lisa and rich (our neighbors) were there along with carmen when i came home from the game. Mare wanted some meds so as i prepared it she whispered to me, "i want to play a joke on Rich." Rich is a great guy but a little squeamish about things like this and would never even consider giving mare her meds in her pic line. Mare asked him to give her the meds and he said no way. But after giving him her version of the puppy dog look, he relented. As he did it it was obvious he was way out of his comfort zone and wanted to be somewhere else. If you look at her eyes here you can see she is about to spring something on him. All of a sudden mare starts in with some ow, ow ouch that hurts and freaks Rich out. She wanted to continue the prank but under some pretty heavy medication already, she is unable to hold it together and started laughing. We all did except rich who grabbed the rum that was left over from uncle Pauls visit and started chugging. I think he wet himself.

We had a great day just being together. We watched two movies and held hands. She is sleeping now and breathing irregular. I hope she does not feel afraid.

i love this pic. Rich and Lisas daughter sidney fed Marilyn her Popsicle tonight. I wonder what she thinks of all this. How it will impact her when mare is gone??

May mare have a restful and peaceful sleep.

Friday, September 25, 2009

Thursday September 23rd

It was a long walk from the doctor's office to the waiting room. We had just got the news we had feared for so long. Lauren and Selena were in the waiting room and i had to get them so the doctor could tell them also. I was walking but felt like i was floating and spinning out of control. I wanted to scream and run away but had to hold it together so i would not alarm them. I had just been told my wife was going to die. When i found them i simply said mom wants you. I quickly turned away so as not to give it away. They knew immediately.

That was one year ago today. I have a terrible memory but i remember everything about that day like it was yesterday. When i see pictures of Marilyn standing, those seem like distant memories though. So weird. 21 months since the onset of symptoms, 12 since diagnosis and Marilyn is still holding on to life. Lynn asked her is she was afraid today. Mare told her yes. Not about her future in heaven, that is a given. But afraid of missing things here. Mom things. Graduations, marriages, grand kids, homecoming parades. I had to take one of those things from her today.

I am so thankful for all the help and visitors (i could not do this without you) but it allows for little time for us just to be together. In the mornings when i am here alone with her, she is sleeping. Then between gpa and kay arriving around 11 and visitors and naps, we have little time together. Please dont get me wrong, we want and need all of you. And i need the breaks that you allow me to have. Im just getting a little jealous of her time as we draw nearer. I finally got some alone time and had to tell her that going to the game to see her little homecoming king and his queen friday night was not a good idea. It is going to be cold and she has not been out of the bed except once in 20 days. If something were to happen, it would devastate bubba and all those that know her. She said in her cute little voice, "couldn't i just sit in the van and watch?" I hate ALS. I hate those letters and what is behind them. I hate what it has taken from mare and us and it does so in a cruel and slow way so you have to experience every moment of it as if in slow motion so you feel it even more.
Dr Paul the hospice doc came today. He is concerned about mares increasing muscular/skeletal pain and headaches. He suggested mare go on methadone and a ibuprofen type med and she agreed. She will also switch to a pump to feed her overnight. She is taking more now and the hang feedings are not quite slow enough to keep her from getting a tummy ache. He is such a kind and gentle man. When he left i walked him out as i wanted to ask him something. Outside, he told me he knows what im going through. His wife passed of breast cancer some 15 years ago. We shared a tear together. Then he told me what i was going to ask, he knew. He said we are close. Very close. He recognized that she is a fighter and could surprise us all. We all know the writing is on the wall but he wanted me to be aware of some things. He told me some things to avoid any future guilt. He assured me i was doing a good job. He also spoke of all of you. Marilyn's Army and how impressive our level of support is. He should know. He sees a lot of folks in our shoes. We have a lot of people in our shoes walking with us. Can i say thanks again? Wish there was a word that meant thank you on steroids. I'd use it.

Gpa and Kay went home for the weekend. I know that was hard for them. They have been here 6 months now and have invested a lot of themselves to mare and our family. They will come back on Tuesday to continue their support.

My night angels gave mare and me a restful and peaceful sleep.

Thursday, September 24, 2009

Wednesday September 23rd

Our good friend Dave Welch who use to work with me in Sedro but retired from teaching to get a real job with the police department. He went from teaching to arresting his students.

Jayne left for Oregon university and wanted to see mare before she went. We both cried hard as she left. Love you Jayne!

just wanted you to know She's ok today. Was told she had a restless night but taken care of by very caring night angels.

More tomorrow. Im suffering from a little case of writers block :)
Thanks for all the emails and posts encouraging me. Jeff
May Mare have a restful and peaceful sleep.

Tuesday, September 22, 2009

Tuesday September 22nd

Little did my night angels know what was in store for them tonight.

Tuesdays is clinic day. Lauren usually will find any excuse to come home because they bring such good dinners every Tuesday. Hey, that outfit on the left looks a little familiar????

Lacey played piano for mare today. Love that sound in my house again. Mare has had a huge impact on Nicole. So much so we got a letter from her mom thanking Mare for teaching her what courage is.

So it is 1130 pm and im getting ready to blog. Not sure what to say as it had been a fairly uneventful day. Same stuff, different day....yadda yadda (for all my fellow Seinfeld freaks). Then the alarm goes off and i jump out of bed and rush downstairs. I'm hoping that the night angels had just inadvertently hit my alarm button. Gpa had purchased a wireless doorbell a long time ago so mare could call me at night if she needed something. She is no longer able to move her hands and arms to push the button so we have it there if the night angels need me for something. It wasn't a false alarm.

I hurriedly get downstairs to see that it was something serious. Mare was choking on some tea. On TEA! ALS eventually makes the muscles in the throat so weak that taking anything orally is a risk. That is why she had the feeding tube put in last july. Mare is only taking liquids, mashed potatoes and an occasional egg in the morning. I usually fry them over easy so the yoke helps her to eat it. Today she wanted a deviled egg. I found a recipe i thought she would like and gpa feed her.

As i got to her bedside after the alarm, she wanted to use her cough assist machine. Her diaphragm is so weak that she is not able to cough on her own. This machine coughs for her and after a few attempts and some O2 added to her mask, she was ok. This is what it is like living with ALS. At any moment, we can have a minor to major crisis. You are constantly aware how on the edge we are. People keep telling me how strong we all are. Mare is the strong one. We are doing what have to do to survive each day. What choice do we have?

I was so glad i had three night angels tonight for the crisis. They were all nurses from st joes. So to have trained staff there was definitely a bonus on top of not being alone. But we have not been alone since this started. Why have we been so fortunate? I know it is in large part due to how mare treated people prior to this disease. Payback is rich! And part of it is the nasty nature of this disease and how unfair it is so you want to do something, anything. I feel almost guilty that we have so much support. There are so many good people out there having to deal with stuff as bad as this but without the support we have had. At times, i wish you didn't all have to be there for us. I long for a return to some sence of normalcy and quiet at home. In saying that, im not diminishing all you have done for us. No way! Thanks again.........

Thanks to all of you that enjoy reading the blog. I struggle with writing this sometimes. I dont want to share too much. Lauren mentioned once that it was like living in a fish bowl. It is. But this is so heavy i feel a need to share it. It makes it bearable knowing that you know. Sometimes i finish the blog and realize that i am writing about me and my issues with this experience. I often have to delete major portions of what i wrote as i want this to be about mare. Sorry if you detect me having a little pity party at times. Mare is the one living with ALS.

May Mare have a restful and peaceful sleep

Monday September 21

I love Mondays with Marilyn. You see, it is massage monday. And i get to piggy back on Mares hospice massage and get 30 minutes of the most gifted hands on my back and shoulders too. Marilyn loves it. She made the comment last week that she is touch starved. Think about how tactile a normal day is for normal people. Then picture Mare in bed not being able to move. So when you visit, she will never turn down a foot rub or just a holding and stroking of her hand. It is "gold" to her. We use to do this little squeeze game when we would hold hands. I would squeeze three times for I - Love - You. She would squeeze back four, I - Love - You - Too! I had to squeeze all seven today.

After a great weekend, we had a little rougher day today. Not many visitors and that was probably good. She was a little more tired today and minor breathing issues were back. We had our reoccurring mask issues. After so many hours in one mask, it will start to hurt an area on her face. So we switch it out to relieve that spot and the new one hurts another. That is why you will see so many different masks on her face in the pictures. She was very cold all day. Even as warm as it was, she could not have enough blankets on. I noticed her color was not as good as over the weekend either. She looked very pale to me. The nurse came and suggested Methodone for mares pain. She is taking more and more for headaches and sore shoulders and the nurse gave us the benefits of the switch. She will come back on Thursday and Mare is to let her know. Her call.

I gave Mare a bed bath today. I was so proud of myself. I did the whole thing, even switching out all the sheets with her in the bed. Then Carmen and Lynn and her daughter Jillian finished the job by washing her hair. Mare felt so good after this.

My night angels were Eilleen Smith-Morland and her sister Jan. This is not Eileen's sister pictured here. It' just her husband Dave who wanted some ink. Seriously, we met these two people through tennis and they are proof of what you hear tennis people say. Tennis people are good people.

Today was Gpa and Kays 13th anniversary. They went out to dinner. Next Monday is our 24th! someone whispered in my ear that mare was holding on to get to that day. We went out for 5 years before getting married so that is 29 years together. I am lucky she gave me that many. A year or so before we got the news of her diagnosis of ALS, we hit a rocky patch. It was over stupid stuff. I'm a stubborn Norske and she has a little Irish pride from her side that doesnt like to admit fault either. Put those two together and you're bound to bang heads eventually. We did and let it get way out of hand. I took off in the trailer and after a week or so called hoping she would see the error of her ways :) and beg me to come back. She didn't and wasn't so interested in fixing this. I got a little scared that i was going to continue the leer tradition and make it 6 brothers in a row in our fam to divorce. So i eventually came home and we patched things up. What a waste of time and energy that was. When we got the news of ALS we were in one of the best spots of our marriage. Looking back, I am so thankful that things got good before things got bad. There will be no six in a row!
So next monday we are requesting no fam or visitors. (except my night angels!) Im getting food from our favorite Italian place and will mash mares up so she can eat a little and we will watch our wedding video. She would always want to watch that video. I would tell her like most guys, "But ive already seen it."
May Mare have a restful and peaceful sleep.

Sunday, September 20, 2009

Saturday/Sunday September 19th & 20th

Mare had a really good weekend. I wasn't even going to blog anything but i know people start getting worried if they dont see something on here. She looked good and had no major breathing issues. She still has not been out of bed since last weekend but all in all, a good weekend. I was on my own Sat night. It had been a while since i had to pull the night duty. Makes me appreciate my night angels even more. Sunday night, holly came to my rescue again. That lady has more energy than the teenagers i work with. Truly amazing lady.

Speaking of truly amazing lady, we have met so many people who were impressed with the way mare took care of their baby. She really was a great nurse. Peter and Elizabeth dropped off dinner sat. Mare took care of their premature little guy jack and they were so impressed with Mares care they have been very supportive like the rest of you during this time.

My staff continue to support me above and beyond the call. One of our ride team members at my school emailed to offer 6 days in addition to the others. She is a counselor there and has been someone i could go unload on with it got too much at work. She is my work angel. At times i wish i was able to go to work now. It would help take my mind off this being around all those kids. I just cant leave her though.

We had a bunch of family here on Sunday. I snuck in a nap. Uncle Paul and Mares sister Kathy were here with Gpa and Kay. We had some nephews here as well. Rod and Kim Koenig brought dinner. They are friends that go back to the days we lived in Bham. Lauren is rooming with their daughter at NWU.
Mare has hopes to at least go to the halftime show of the football game next week where they announce the Royalty. Not sure if she will make it to the event but again, it will be her call.
May mare have a restful and peaceful sleep.

Saturday, September 19, 2009

Friday September 18th

My two angels from St. Joes took the night watch again.

We had many visitors again today. I apologize for not recognizing you all but i know you understand. Some of our tennis friends came to visit. I miss them and playing with them. We spent some time catching up.

I was wondering what i was going to do about work so i gave them a call. It appears that without even making an official plea for shared leave, i have been donated enough to stay home through Oct. 2nd. My High School AD called. He has been so supportive throughout this ordeal. You see, the man that started the ALS Doubleday bike ride was a friend of his. He understands what it is like to watch someone you love and admire be taken by this insidious disease. He called to tell me he donated 10 days to me so i could stay home and be with mare. Thanks Ed.

When i got home from the Homecoming assembly, my house was filled with the amazing sound of the Nichols family. Mom and her three daughters were at the piano singing for mare. They have amazing voices. Mare was just soaking it in. A few months ago, Mare and I bit the bullet and planned her memorial service. She picked out who she wants to lead it, who her pall bearers will be, what songs she wants and who will sing them. The Nichols family is who mare has chosen. When they finished i could not help but wonder when they would sing for her next. I'm glad Mare got to hear that. Her smiles are becoming a little less frequent due to weakening diaphragm muscles. She smiled almost the entire time they sang.
What a moment. I sat in the auditorium with Lauren, Carmen and Lynn. We were surrounded by all the other royalty family. Marilyn had decided not to attempt to make the trip. It was odd to sit there surrounded by people but feeling so isolated. I thought of the upcoming game next week when the royalty will parade through at halftime. I remember from last year that the parents also are announced. My mind fast forwarded to that moment next week when they announce Bub as King and then his parents. I hope i can hold it together.
May mare have a restful and peaceful sleep.

They played this video at the assembly. Sorry about the poor quality. I had to video tape it. You Tube made us change the audio. It was better before

Thursday, September 17, 2009

Thursday September 17th

Mare had a good night and good day. Breathing difficulties were minor and she had some great visitors. She has decided not to go to the assembly Friday. I will go and tape it for her. She realizes it would be a difficult trip for her. I am glad she chose not to go.

The respiratory therapist came to check on mare today. We asked her why the machine was not letting her take a breath sometimes. She is suppose to be able to override the machines input/output if she wants to take a breathe while it is trying to help her breathe out. The therapist confirmed that mares lungs are probably just getting too weak to override the machine.
She had a good visit from Dr Rosquist from St Joes. She spent a lot of time just rubbing mares feet and chatting. It was a good visit. We also had a visit from her new hospice nurse. She is not Jane but she will take good care of mare.

Two more night angel from Joes will give me another good nights sleep. I'm getting spoiled.

In the afternoon, we had a visit from 12 of the members of the Synergy choir from Mount Vernon High School. Lauren used to be in that choir. They were awesome. They sang 4 songs. The house just breathed life for those few minutes. Some of the kids know our family. They had difficulty singing. The last song they sang was Good ole A Cappella. As i listened to the great sound coming from those kids, the words to the second verse hit me hard

Singing it soul to soul, brother to brother
A cappella-it sounds good to me
Singing it soul to soul, brother to brother
A cappella-it sounds good to me

And now i turn out the lights and say goodnight to another day
Im gonna rest my weary head in my long awaited bed
I'm gonna get on me knees and pray, ask the Lord to give me just one more day
Oh Lord hear my plea-This music just sounds so good to me

Singing it soul to soul, brother to brother...........

May Mare have a restful and peaceful sleep.

ps My dear friend John Carl who battled cancer with dignity finished that battle today. I spent many an hour on the tennis court with him. More hours out to dinner with him and his wife and our friend pam.

May John rest in peace.

Wednesday September 16th

Marilyn slept until 1pm today. She had some difficulties early am and took two doses of her meds. It knocked her out. When she awoke, she requested a bath and the bath aide came right out again and took care of her. Cori was here and helped her. With a lot of visitors and more on there way, gpa and kay took a well deserved evening off.

Cori wanted me to get out for a while so i went up to the park and played some tennis with friends. I keep my phone handy just in case i need to rush home for any reason. My phone does go off and Carrol Thomas tells me there is a problem. I grab my stuff and speed home to find that in adjusting mares mask, the face mask became unsnapped and she was having trouble getting a seal and thereby breathing was difficult.

Later, when Lynn (night angel along with Holly again) and Bob were here, she was having another episode of anxiety caused by not being able to breathe. These episodes continue to become more frequent.

Tia (brians girlfriend) came by tonight as she wanted to give mare something. She told mare that the girls soccer team (of which she is the star) was inspired by the football team so they are all wearing red ribbons in their hair with Marilyns name and ALS on them. They took a team picture with a sign we love you mare and the girls signed it. Mare was moved to tears. Apparently the volleyball team is doing the same thing. Marilyn's story is moving so many to do something, anything to support her fight with a disease that offers no hope.

Brians homecoming assembly is friday. Mare wants to go. I told her that Mary Rebar from ALS said she would pay a heavy price for a big outing. Mare asked with a hint of fear, "what do you mean?" I told her it would just take a lot out of her. Is it smart for her to go? It does not matter. If she wants to go, she can go. She will fight this on her terms. ALS has taken so much from her. It cannot take any memories she wants to create.
May Mare have a restful and peaceful sleep.

Wednesday, September 16, 2009

Tuesday September 15th

Thanks to my two night angels, i slept again last night. I am so amazed so many people are willing to give up so much time to help us.
Ok so this lady below is Lisa our neighbor who loves mare and was going to punch me after yesterdays picture. She is not that wierd.
Mare cried again today. Not because she cant use her right hand. This time tears of joy. We got to watch Laurens video of her talking about her mom and then singing you lift me up at the scholarship contest. Lauren is a pretty strong girl. She holds it together pretty well but even she was not as composed as she normally is. I loved the look on mares face as she watched it.

As composed as my lauren is, even she recognizes the need for more support at her new school. She has some terrific roommates who are very supportive but she was at school reading and praying for more friends who she can lean on along this journey. She had some young lady come up and ask her if she was lauren leer?? If i have the story right, turns out this girls mom works with laurens best friends mom in bham. The two moms starting talking about stuff and laurens friends mom shared the story of Mare and her lauren down at Northwest U. The mom tells her daughter at NW and together, they have been praying for our family for two weeks. She made a genuine gesture to Lauren that she wants to be there for her. Pretty cool!

We got some bad news that our hospice nurse is changing positions within hospice and we will not have her anymore :( We meet the new nurse on Thur.

I started dripping the food into mares tube yesterday. It was actually kind of cool. It goes in over a longer period of time than just pushing it directly into the tube and is easier for mare. What is not getting easier is her breathing. She is complaining more and more of not being able to breath even on the Avaps unit. It actually shut down yesterday. Apparently, mare was not able to breathe and an alarm went off and it would not work. Having dealt with this the other day, we quickly got out the other machine while the rest in the room comforted mare and we got her breathing again. Turning off the power source reboot the machine and it has been working since. I called the supplier and he said if she is not able to breathe on this machine, the next step is the ventilator. I explained to him we are not going that route.

Every day is so surreal. We dont want to lose her but we dont want her to suffer either. Your emotions get played hard. You cant help but wonder, is this the day? And then she makes it through another. A week ago, we thought she would go. A week later she is still here. To say she is a fighter would be an understatement. Most of her family went in 12-14 months. Mare just started her 21st month since symptoms. Seems like 21 years.

When the football team wore the shirts (see last weekends blog) that told her to fight ALS. She took them up on their challenge.

May mare have a restful and peaceful sleep.

Tuesday, September 15, 2009

Monday September 14th

Above, Grandpa and Kay doing their daily watch over his little girl.

Left, some weirdo who came in off the street and wanted a picture taken with mare???
Below, my two night angels that gave me rest!
Mare did not even suggest getting out of bed today. I think that took a lot out of her to get out yesterday and to make the trip outside. Her respiratory therapist wanted us to try a full face mask in order to solve the never ending mask problems. We tried it and mare hated it. She felt clastrophobic and we went back to the current one. That is always so stressful for her.
Mare wanted to browse facebook so i put the laptop on her lap and moved her hand in place to use the mouse. She quickly realized she was unable to control her right hand to navigate the page. ALS has finally taken all of mares limbs and even the little tiny pleasures of life she could enjoy. She became very frustrated and then started to cry. I had to wipe the tears from her eyes. How cruel this disease is. It leaves your intact mind to be trapped inside a lifeless body.
There is hope for the future though. Mare and I were alerted to new breakthroughs in familial ALS that could be a possible cure. We shared that with Brian. I could not wait to tell him. I cant wait to tell Lauren. Along with dealing with great sadness of Mare, lingering in the background, laying just as heavy on all our hearts is the fact it could strike again. I could not do this again. I dont know how Gpa is doing it. If this news is true, it is a huge lifting of that weight. Mare told brian is was too late for her but for those in the future who might get this, they have hope. I cant find the link right now but will post tomorrow. It is somewhere on Mares facebook.
Our social worker will visit today. I also have night angels again!!
Last night i dreamt of mare and me before ALS :(
May Mare have a restful and peaceful sleep.

Monday, September 14, 2009

Monday September 14th

I feel so rested, thanks to Marilyn's night angels pictured right. They had to administer some meds twice during the night. They also told me of some short shallow breathing that i have seen in nights past. It is a cruel reminder of the relentless march of als and its affects on Marilyns body.

Sunday, dispite the mishap, was a good day. Lots of visits and smiles and laughter. Two of Marilyn Sisters came up. Kathy stayed late and played cards with Mare.

Before Mare went to bed she wanted me to read the blog to her. I have not been doing that since the first time i did and she got a little anxious. I told her that i am very honest about what is going on as write. Maybe because she had just had a nice dose of ativan, she told me to bring it on.
So as i read her Saturdays events and brian getting homecoming king, i read the part of me being worried that she would try to hold on til then. She was taken back a bit and said something like, you dont want me to fight? My night angels quickly stepped in to explain to Mare that they understood me to mean that we were giving Mare permission to go not that we wanted her to go. She said, "you know what i'm waiting for? Not brian getting homecoming but brian getting married!"
I'm off to Bham today to get the battey pack for mare. It is also Massage Monday! Not only do they give mare one but me too! Several people have mentioned the possibility of taking some of my previous emails, combined with this blog and some background stuff and writing a book when this is all over. At first i dismissed the idea. Last night i thought well maybe. I'm thinking of calling it Mondays with Marilyn as a take off on Tuesdays with Morrie which is another book about ALS. I would not be the first to do such a project as i have seen many of the same online. But if i could help raise money and awareness to end this ruthless disease, it would be time well spent. My computer crashed so i need all the monthly email updates sent back to my email address. Thanks if you can help with this request.

May Mare have a restful and peaceful sleep.

Saturday, September 12, 2009

Saturday and Sunday the 12th and 13th of September

Today was a day of singing. Dr. Bynam came with his quartet and sang for mare. She loved it.
Music is such a part of who she is that i know that meant so much to her to have those gentlemen take the time to sing to her. Lauren was also singing today. She was at a scholarship contest for the Eagles that she has participated in the last three years. She has finished 3 rd and 2nd and is hoping for 2nd again so she can compete again next year. She sang "you raise me up" in honor of her mother. She got a little choked up and so did everyone else as she told them why she was singing the song. She ended up taking 3rd again but that is $500 more dollars we dont have to shell out for next semester.

Before mare lost her ability to use her arms she started making quilts for the kids. As the disease progressed, she needed help from her quilting buddies but they both got done. They are so beautiful and it makes me happy to think that long after their mother is gone, she will be tucking them in each night and keeping them warm, the kids will be able to hug their mother too. The attached picture will be sewn into the back of Laurens quilt. This is my favorite picture of them.

I put in my second night with mare alone. She was up many times. Her throat gets so dry from the machine. She needed water several times. She is still quite short with me. She figured out that we had not been giving her the anti depressant the doc had put her on. you are not suppose to go cold turkey on those. I quickly gave her one :)

She awoke Sunday and wanted to get out of that stinking bed and into her chair. We were not sure it was the best idea. At this point, whatever she wants to do she can do. I mentioned a few days ago that Mary Rebar said the nutrition she is getting in her tube would cause a rebound effect and she was right again. We got her into the chair and her sister Kathy and neighbor Lisa washed her hair. She loved it. We did notice that the disease continues its ugly progression of stealing from mare. She is not able to use her right hand to control the chair like she use to. That is just from the 6 days of being out of the chair. It doesn't stop. It just keeps taking. But not her sense of humor.

On Saturday, mare asked if i had called about the batter pack yet. I confessed i had not but would do so on Monday. She said, "why not today" in that cute little voice she has been using trying to talk on the machine. I said because they are probably not open and i would call on monday. She responded, "what do you think they are going to do if someone calls and and needs a ventilator, tell them to wait til monday?" I'll make the call. The batteries packs are pricey. We had visitors drop off a card today. Very cute and funny, and had a check inside. I did not look at the amount as i did not want to appear rude and quite honestly, am a little embarrassed by all that so many have given us. When they left i opened it to find it written for $1,000. It will cover the battery pack for mare to be able to travel if she needs it. Thanks to all who have helped.

She had some visitors after that. Dr Knudson from the womens clinic brought her some beautiful flowers. Gpa and Kay brought flowers from church. The young man from the football team, Jake, who had the idea to honor mare and brian with shirts. He said there are pictures online at either or nwc athletics. I have not had a chance to search so maybe someone could and post the link? My dear friends Cindi and Jim also showed up. Cindi is a tremendous tennis player who played #1 at the UW and was like athlete of the century or something like that. I went to nationals in texas with her for mixed doubles and we went 5-0. I played ok but she rocked and gave me the best tennis experience of my life and i will ever be grateful for that. She has found a good man in Jim and i was so glad to see them both. Bob and Mo stanton also came and then it happened.

Mare wanted some sunshine. We were going to try to hook her machine up to an extension chord so she could go outside. we got ready to do all this and made the switch. Every time we take her off the machine it is so scary. We switched the machine to the extension chord and all was well. Until we heard an alarm and the machine went off. I freaked. I tried to see what was wrong but couldn't figure it out. I remembered we have a back up machine and we quickly got that out, plugged it in and after some struggles we got her breathing again. Nerves were shot. I was shaking for several minutes. Lisa and i took the other machine outside and plugged it in and everything was working again. I must have loosened a chord that caused it to alarm and shut off. We tried it again and Mare is currently enjoying some sun and friends and neighbors on our covered porch. She is living life. More that most. Taking advantage of each moment.

I talked to the school district and found out i dont have any sick days this year because i have not worked yet. They are going to put out a request for shared leave again as i did not use all the days given me last year even with all the days i took off to be with mare. My fellow teachers have been more than generous to me. Again to the point of embarrassment. At the very least, i can put in one day and then get my days to use for this year.

Two more angels are coming to take care of mare tonight. I get to sleep. If you would, remember our dear friends Pam and John (john has cancer) in your prayers if you pray.

May mare have a restful and peaceful sleep.

Friday September 11

when i wake in the morning i have a brief moment, ever so brief that it is just another normal day. But then the "great sadness" i spoke of a few months back in one of our update letters descends. For all of us that love marilyn, we experience it. A helplessness of knowing what is to come and not being able to alter her future. So we do what we can. We comfort her, write her, call her, visit her or pray for her. You all are with us, every step of the way.

Grandpa and Kay allowed me to have the most normal day i have had in a long time. In the afternoon, i was able to go watch brian play tennis while they comforted mare. I was in heaven. I always wanted both my kids to devote themselves to tennis. Neither did but they both are pretty dang good anyway and it was fun to watch him. He beat a very nice kid from anacortes 6-3, 6-3. While i was there i got to see some great friends. His coach cheryl and her husband vince have been very kind to us. I got to tell cheryl thank you in person. Patti and Shirley Shanander, long time tennis friends were there and we talked for some time. My good friend Justin B who i love to play tennis with was also there. Of course our conversations were about mare foremost, it was good just watching my son and talking to friends. When brian finished i rushed him to school so he could tailgate before the Mount Vernon football game. He showed me something that the boys were going to do after the game. I could not respond to him.

I hung out at Bob Walkers til the game started. We went to the game and i saw many people who just by the smile they gave me, let me know that "they know."

Mount vernon won the game and as tradition, the team came over to the student section to sing the alma mater and then they did it. Most of the team took off their jerseys to show me what my son had shown me earlier. The QB on the team had the idea to honor brian and his mom by wearing shirts under their jerseys that said on one side, "Fight ALS Marilyn" and on the other, "We are with you every step of the way." I went down to the field and hugged each one i could. Boys who i never met looked at me with the eyes of the great sadness and said simply, "i'm sorry." When it gets right down to it, people are good! Brian was there too. I have not seen him weep much over the past year. It was good to see it last night.

Brian was voted Home Coming King. We are all so proud of him. My only worry is his mom will try to continue to fight so she can see that night in two weeks.

Marilyn is complaining more and more of headaches and difficulty breathing even with the mask. She is becoming a little more agitated towards me. I was here by myself last night with her. She was up several times again. She has asked for dilauted (pain killer) two nights in a row now. It takes away the terrible headaches and lets her sleep.

May Marilyn have a restful and peaceful sleep.

Friday, September 11, 2009

Thursday September 10

Mare had a restless night. The three angels from St joes were up most of the night trying to make mare comfortable. I got another full nighs sleep. Felt so good.

The mask was really giving mare fits this morning. I called the repiratory therapist and she was here very quickly. We tried several things and ended up putting on one of her old masks. She told mare the reason the machine ramps up and gives her too much airs is due to all the talking she is doing. Whenever we have to remove the mask it is quite scary for her. She is unable to breathe in a very short time off the machine.

I got a call early this morning from a dear friend Terry who just got back from palm springs. He was visiting our other friends pam and john carl. John has cancer and is home now and hospice is involved. He and Marilyn were given a benefit tennis tournament last year in october i think. It is so odd that they are both at this point of their battles. Terry told me how much he appreciated me writing this. His call was a great way to start the day. It is good for me as well. Terry's wife said that God was going to hit the jack pot when he calls both of them home. May John and Pam have a restful and peaceful sleep.

My good high school buddy brian came up from california to show us his new baby. I was his best man and lauren sang in his wedding. My son Brian is named after him. His father and mother in law and his wife cynthia were here too. His Father in law is a pastor in mexico. He prayed for me, marilyn and the enitire family. Even though it was all in spanish, it was a pretty cool moment.

Mare use to work in the childbirth center in bham. She was very good at that job and misses holding those babies. She told me the other day she is touch starved. When i gave the baby to her and layed in next to her, put her arms around it and allowed the little kyler to grab mares finger, i lost it. The emotions of seeing the beginning of life and the end of life all at once were too much for me. The look on Mares face was incredible.

Two more angels staying to watch over mare tonight. May mare have a restful and peaceful sleep.