Monday, August 31, 2009

Sunday August 30th

I didn't get her up for church. She was not happy as she really wanted to go. But we were up until 1130 last night and of course i cant sleep for a few hours after i get her to bed. It takes an hour and a half to get her up, dressed and fed and out the door. So i just let us both sleep. I told her i would find an evening service next week for her.

Instead, brian came down from his lair upstairs and we watched the little league world series together. It was a great game and good time for the three of us. Brian doesnt talk much with us about all of this. Its easier if you dont for him i think. But deep down he's strong like his mother and i know he will be alright. Both the kids are going to make their mother so proud.

Lauren needed some work on her car so brian and i went down there in the evening to pick it up. While we were gone, Mare had quite the choking spell. Gpa and kay had to get her over to her cough assist machine. When i got back she was ok but when i gave her the nightime meds she had some difficulty getting those down as well. For the most part she stays relatively calm during these episodes. She is so strong. They scare the piss out of me.

please pray that mare be spared any struggling. She doesnt deserve any of this but especially that. She has been so incredibly strong and brave. It has been so quiet here. Im looking forward to visitors. Thanks you guys for sharing this burden with us.

may mare have a restful and peaceful sleep.

Saturday, August 29, 2009

Saturday August 29th

It was a good day. It felt almost normal. Mare got out of bed at 1130 and gave her a shower. She loves to get her hair washed. After breakfast she wanted to go to see laurens apartment. I hooked up her bipap in the van and we were off. When we got there she got the grand tour and also got to meet all laurens roomates. Im so glad she got a chance to see where her daughter will be and who she will live with. She also got a nice visit with her friend and mother of Kara, kim koenig. I took a few pictures to post but my daughter has not sent them to me so i will post them tomorrow. Then you can compare the previous pic and see how the girls have grown up.

We took Lauren to the Wing Dome in kirkland for dinner. (sorry lisa - i should have called you sis as i know you love that place) Mare could not eat the wings but i gave her some fries loaded with tarter.

When we got home i fed her some soup and then ice cream as we watched a really dumb movie - the international- It was really nice to have the house just to the two of us. We appreciate all the visitors and helpers but it feels so good to have the place just to ourselves. It gives us some sence of normalcy.

I have one more week before school is to start. There is talk of a strike. We dont need that stress added to this situation. 5 years ago i moved to Marysville when they had the longest teacher strike in state history. I ended up losing my job a a result and having to take out much of the retirement i had accrued just to make it until the next fall. It was the worst year of my life before this year. Needless to say, im not a huge fan of teacher strikes.

Mare was on her bipap most of the day. It makes her feel a lot more comfortable. She had a good day. We had a good day. Thanks for all the encouragment. After the news i need to get her to bed. I saved some of those wings and they are calling my name.

May mare have a restful and peaceful sleep.

Friday August 28th

I had to get up early to take lauren and her stuff to kirkland. As Lauren hugged monica (the doctor she had been living with in bham) i was feeling much gratitude toward that wonderful woman that did so much for our family and especially our daughter these last many months. On the way to Kirkland we stopped at home to pick up a few things, one of them being a card from the staff at the womens clinic where mare worked. It had close to $400 in it to help her pay forbooks. I will be eternally grateful to all that have helped us but these people have hearts that are incredible. They clean our house, fix us meals, give us gifts and so much more. It is a testament to the impact Marilyn's precious soul has on those that get to know her.

Lauren will be staying in a on campus apartment with three other girls, one of them being a childhood friend pictured here - kara koenig. Lauren is the independent type and this will be a big adjustment for her. I am so glad she will be surrounded by people of faith during the tough times that are ahead of us all.
Mare had a difficult day yesterday. She did get out to go to the eye doctor to get more contacts. She was very tired and laboured to breathe the rest of the day. She was a little anxious last night and i almost called the hospice nurse. She finally went to bed after our nightime routine of getting her comfortable while listening to the bible on her kindle (thanks aunt mona, that gift has been invalualbe). I kissed her head and she joked that she would gladly scoot over if she could to make room for me :) I took a mental picture of that cute little grin on her face as i wished her a restful and peaceful sleep.

Friday, August 28, 2009

Thursday Aug 27th

Today was uneventful. That does not mean it was not emotionally draining. You see, ALS is a slow, PROGRESSIVE disease. It doesn't get better, it just gets worse. Apart from Divine healing, it is not going to end up rosie. I am struggling with the Divine in all this. How does a loving God allow this to take place in the life of one of His own? I guess without an eternal perspective you cannot get your arms around this. I have to admit, i'm a little pissed off about all of this and have been for some time. I know that Mare has affected many people and her grace in all of this does spell G-O-D. I just don't feel it. I have no desire to be a part of it. Enough about me. This is about her.

Mare's lone appointment today was with the massage therapist. Hospice supplies a message once a week for mare and her caretaker. Unfortunately for me, i was unable to take part today so Gpa's wife Kay was the lucky reipient of the half hour rub.

We were to have family time today. Lauren is still a little sick so she stayed away to protect her mom. I'm moving her to kirkland tomorrow to move into Northwest university.

I went to practice today. It is a struggle now everyday to know what to do. Do i leave her? Mare is really struggling to breathe on her own so i dont know if i should leave. My daughter has told me we need to continue living regardless of this disease. I guess as long as i am ok with my relationship to mare i must continue to do my stuff. I have no regrets. I have and will continue to take the best care of my wife that i can. I am no good to her if i dont stay mentally healthy.

We decided to invite the walkers over tonight. We have many close friends and the walkers are two of our closest. Bob is considered to be the other woman in my life. Ok, that may sound a little weird but it is all good. I am lucky to have such a good friend. I only wish he wasnt so good at cribbage. He took the cup back tonight.

Putting mare to bed is so weird. Will it be the last time? That is what goes through my head every night. I kiss her and tell her i love her. I try to make her comfortable. She asks me to move her pillow just right as she cant do it herself. I have to get her arms just right as she cant do it herself. I have to move her legs just right as she cant do it herself. I have to get her mask on just right as she cant do it herself. I have to scratch for her as she cant do it herself. I'm not complaining, i will do whatever she needs. I just want you to know what an amazing lady she is as she doesnt complain. Hardly ever. Yesterday, she was trying to get something just right and said, "i just want to move." Can you imagine not being able to move? How does she do it and stay so fricken postive?

I want to officially go on record and proclaim loudly and forcefully that i HATE ALS! I hate everything it has taken from Mare.

May mare have a restful and peaceful sleep.

Wednesday, August 26, 2009

Wednesday Aug 26th

I woke up late today. That is not good as it takes a while to get mare up and dressed and out the door. It was an ALS clinic day. We were suppose to be in seattle at 1130. We were a little late. When we go to Virginia Mason to the ALS clinic, it is a well oiled machine. They put her in a room and all the specialists come to see her. We saw a nutritionist and they want mare to start using the feeding tube for some of her nutrition. She sleeps so much it is difficult for her to get enough fuel for the day. She is down to 116 pounds. Respiratory was next. The dreaded lung capacity tests. We knew it would not be good. We have noticed a marked difference in the last few days. The tests bore that out. 6 weeks ago at her last apptmt, she was at 28% capacity, today the tests showed her to be at 14% :( Dr ravits the als specialist came in next and encouraged mare to stay on the bipap machine as much as she wants. That machine pushes air into mare's lungs according to her needs. When she is not on it, it is obvious she is laboring to breathe. The big thing they are going to help us with is to get mare a battery for her bipap machine so she can travel with it. Appaently it is not easy. The chair company doesnt help as they dont want the liability and the same for the bipap folks. We finished there and said goodbye to Gina, Rick and the girls as they headed back to oregon. It is quiet here tonight and i miss them. After we said goodbye we headed straight to Dicks in seattle for burgers. I love that place.

Tonight i was watching videos that were recovered from my damaged laptop. I watched clips from the benefit tennis tourney for John Carl and Marilyn. I saw Marilyn walking, hugging me and she looked so good. I so much miss her hugging me. It made me miss what we use to have. Our life is so different now. It was painful. Lynn Walker was watching with me and said as painful as it is, i will be glad to have that in the future.

Lauren got home safe and will see us tomorrow and tell us nothing as what happens in Vegas...... We are scheduled to have family time for the next few days with no visitors. Marilyn is sitting watching the M's with her lap dog saddie comfortably in her lap where she should be. May Mare have a restful and peaceful sleep.

Tuesday, August 25, 2009

Tuesday August 25th

Reading all the comments was so encouraging - knowing that others are out there sharing this with us. Thanks for taking the time to read and post comments.

Mare woke up around 10 today. It was shower day. I'm so glad Gina was here to help me. It really is a two person job. Gina and her family have been here for two weeks. They have been so helpful to me. They leave tomorrow and im going to miss them big time.

By the time she got done and had breakfast the Hospice social worker was here followed by the Hospice nurse. The encouraged Mare to finally complete the Physicians order form that will let any EMS know what mares wishes are in terms of how they are to help her. We have been putting that off for so long. It is finally done :(

Mare stayed on oxygen when she was not sleeping today. It seems to give her comfort and her nurse said that was what it was for. It is so hard to watch her not be able to enjoy normal things.

We are taking a few days just for family. Lauren is leaving for school and i start soon also. Wed - Sun are going to be just family days. Should be good.

ps we watched a video of brian when he was 8 playing tennis tonight. It brought back such good memories. When it is all said and done, that is all we have isn't it?

Monday, August 24, 2009

Monday Aug 24th

Lauren's 21st birthday! She is celebrating with a friend in Las Vegas. Brian started his senior year of tennis today. I started coaching tennis as well. It is good to have something to do. I wasn't sure if i should coach considering our situation but Mare said yes and i really needed it for me.

Marilyn had a pretty serious breathing issue yesterday. We hate this disease. There is no getting better - just gets worse. I know many of you want updates and we thought this was the best way to do that without having to speak to each of you individually. So i hope to update each day on how we are doing and marilyn's condition.

Marilyn has been sleeping a lot lately. She uses her bipap machine when she sleeps so it feels good for her. We just started using oxygen with her as well when she is not on the bipap. She has been having a lot of bad headaches too. Gpa said that was common with her mom as well.

Her attitude is still positive. She really is amazing. Rick and Gina (marilyn's sister from portland) and the girls are still here. They are leaving Wednesday after mares appointment in seattle. The hospice nurse is such a gentle lady. She comes twice a week to check on mare and make sure she has all she needs. Time for dinner. Uncle rick smoked some meat on my Traeger. Until tomorrow - the leers