On Tuesday, we had two visitors. Leanna, our hospice social worker and Jayne our hospice nurse. These people are really good at what they do. Leanna is very focused on Mare and I getting time together and taking care of things that may be uncomfortable but need to be talked about. Jayne is an angel. She is so consumed with making mare comfortable. Mare is in good hands.
I spoke with a lady who lost her husband to ALS after a three year battle on Tuesday. We had never spoke but talked for a long time. It was so nice to converse with someone who "knows." Much like talking with gpa about this, she has experienced it first hand. Not that all of you are not an extremely important support line for us but she gets it. She was going to bring over some batteries over and did so on Wednesday morning along with some other things. We hugged as if old friends. It must have been so hard for her to come here and experience ALS again.
I continue to go to practice and looking forward to school as it appears we will start next week. Lauren is taking classes at NW University and Brian has started school. We all continue to try to live normally with the black cloud that hovers over us.
Gina is coming back up for a few days from portland and will arrive by train tonight. Kathy and Paul will also be up this weekend. Should be a good weekend of family and food. Speaking of food.....
Mare is able to eat less and less. The hospice nutritionist is trying to get the feedings started through the feeding tube. Until then we have started giving her ensure through her tube. It is causing some unwanted side affects. Mare is also having difficulties still with her masks. It is difficult to find one that is perfect but the repiratory therapist is coming back on thursday to see what she can do.
Mare continues to hold on tight to life. She has no intentions of checking out anytime soon.
May Mare have a peaceful and restful sleep.
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May Jeff and Marilyn have a peaceful and restful sleep.
ReplyDeleteI'm thinking of Mare daily and I so appreciate your efforts to put down your thoughts almost daily and give your friends who are praying for her and you an update. I know it can't be hard, and you are sub-dividing your time, emotions, efforts and energy. Hang in there Jeff, you're doing a good job of keeping this all in perspective. Hugs and love to you.
ReplyDeleteJudy B
HI Jeff and crew,
ReplyDeleteWe've been following your blog and I really feel for you. Can understand how you must love Marilyn very much and how hard it is to watch her have to be this way. God bless you Jeff, and your kids. You all are very brave. You are in our prayers, all of you. Peace Gerry