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


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  2. Jeff,
    I have to tell you I have several of MY friends who don't even know Marilyn following this blog religiously... I do as well. You have a wonderful gift of writing! It's the first thing I check in the morning. I think it's also good for you to read the comments. It's like a support group. Mare may be the one living with ALS, but remember, people around her are trying to DEAL with ALS, which isn't an easy thing. We need to support one another as well as Marilyn and I think your blog accomplishes that.

    I love you guys,

  3. Thanks sis. We are all here for each other I am encouraged by those that are able to comment. squeeze-squeeze-squeeze :)

  4. Jeff. I so appreciate the blog....thanks for sharing your soul. Having ALS in your face day to day is hard...I have done it twice now with mom and Connie (for those who don't know me I am Mare's cousin, our mom's were first cousins. I think it is important for people to know what ALS is and what a horrific disease it is. It isn't well known by people. I heard a Doctor say out of all the diseases he has seen he feels ALS is the worst. Bless you for "sharing" the ugliness of ALS...I praise God for all the folks that are surrounding you and Marilyn and the rest of the family...Hugs to you all. Pam

  5. This blog is wonderful.. thanks for sharing the difficult moments, the funny ones and the heartfelt ones.. It's important to those of us who love you and aren't close enought to drop in or contribute in a hands on way. It's also important because it puts a face to ALS - the ugliness of a disease that takes your body incrementally. It's such a hideous disease! I so admire Mare's courage and grace ... and your faithfulness,devotion and transparency. This blog will serve to encourage and stregthen others as it has those of use who are reading it now. (Did you know that "strengthen" appears in the Bible almost every time the word "encourage" does?).
    You are in our hearts and prayers thoughout the day. We hold you close in love.
    Barb and John

  6. I so appreciate my sisters in arms in Barb and Cindy. Thank you both for being there and encouraging me. Cant wait to see you both again. Thanks for your faithfulness to us in Him. Jeff n Mare

  7. Jeff, I wanted to thank you for the efforts you put forth into your writings so all of us can share your journey. I'm so glad that it helps you in a way too. Like I said before it makes me feel about 8 years old and helpless to watch from a far. It has to be horrific for you all to have to see her struggle for life each day with the courage of a lion and the strength of a delicate flower. In your writings it is all your emotions and insight that brings the reality to all of us reading your lives. As you know it is about all of you -- you are one, and you too are experiencing this disease regardless if you have the physical symptoms or not. Thanks again for all you do to make us feel closer to Marilyn and your family.