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  • Oh Mair....my little world is crumbling. Today...I had to go to court with my hateful wasband because he's suing me to cut me out of our retirement savings, I got an email from Fred's daughter ( the first one ever to me, the first for him in about 3 years) telling me what a horrible anti-family person I am ( for breaking up her parents marriage, as if anyone can break up a happy marriage) and, the worst, I think that Fred has lost his ability to drink from a straw. I feel numb. The hospital bed came last week, along with the diapers and bedside commode. They are needed, and helpful, but......

    And I have to return to work tomorrow from my holiday. Sigh.

    I, too, think of you daily and pray for your peace and health for your family. Hugs.
    Hi Poppy, This is just a suggestion and I'm trying to be helpful and not make you feel worse. But, when my cousin's father passed away she was pregnant. One of her friend's ask her mom if she could have some of his clothing to have made into a teddy bear to give her. Her friend has two teddy bears made. One for my cousin and one for the newborn. Thought maybe you'd like something like that made for you to sleep with and comfort you. Don't know who does it though. Hugs, Kim
    Happy New Year to you, Mair. I wish you peace, happiness, and good health for you and your family. Your son is especially in my prayers. I'm hoping that the good memories of Clive can live on in your heart and mind and that all of this ALS stuff can fade. I hope that you can be as proud of yourself as we all are of you. Love, Shelly
    Thinking of you Poppy. I personally thank you for your friendship on this forum as well. I'm so sorry for your pain in losing Clive. But, many people never meet someone that they love so much so I'm sure your grateful for that. Hope 2013 bring you peace and healing. Love, Kim
    I so get it Shelly, the Clive I knew went the day his diagnosis was confirmed, that was back in June, it has been a lonely road..The Christmas days have passed, kids have been funny, excited, big and little ones I might add..There's been too much food for me to deal with, I'm lonely but it's bearable..and I get more warm comfort from friends I've made because of the als than from my friends and some family here..because they 'get it'..
    Waiting for new mri/xrays for my son, he's got bad trouble with his back. Heartwrenching seeing him in tears with the pain.
    Keep strong Shelly but be gentle with yourself, you are doing what many people couldn't...
    I think of you often, and send you hugs full of love to help you through..
    Mair xx
    Hi Mair.....you were on my mind all day yesterday. I was sending you warm wishes of good cheer. Did you feel it? I can only imagine your unique loneliness, surrounded by your loved ones. I feel very guilty about feeling very alone, too....even though he's right here, with me. It just makes me so sad. We no longer have any communication. Either words don't mean anything to him, or he just can't respond. I'm frustrated, resentful and grateful. No one else would be able to understand.

    I hope you are finding peace and comfort and I wish you love and joy in this new year. Your friend, Shelly
    Thank you Mair for your message. Tough time of year - Christmas has always been a really big deal in our house. Do you know Airth? In January 2010, Mark and I spent a dream long weekend at Airth Castle, it was one of the very best times of my life - and proper posh. Our room was in one of the original castle turrets, it was a magical time.

    I am thinking of you at this time, I will send a special message for your heart at Midnight Mass Christmas eve xxx
    Oh my gosh.....I've never needed kind words as much as today, and they are extra special coming from you. We had such a hard day, yesterday. Fred's legs are getting weaker and I don't know how much longer I can get him up off the floor. So far, his falls have been scary but minor, as he doesn't go anywhere without my having a death grip on his gait belt. Our problem is the bathroom which is too small for his walker or wheelchair. I was so discouraged yesterday. I actually prayed to God that he take us, both. Shaking it off today.

    It's funny that you said that you thought it was sweet that I wrote to you the other day. I'd write twice a day if I didn't think I'd drive you nuts!

    I hope you and your family have a wonderful holiday, filled with lovely memories both old and new. Hugs to you! Shelly
    Hi Maire, so glad to see your note! Hoping you find joy in this holiday season, and thinking of your dear Clive.
    Thank you sweet Mair! We're doing well and watching American Football. It's noon 15 and I'm still in my Jammies. We'll go to some friends house later for Chili and beer. I hope you are nice and comfy cozy! Love you Sweetie Pie! :)
    I'm going through the same thing you are, my husband of almost 33 years died from ALS on Sept. 18, 2012, we only found out on the 13th of Sept 2012 that he had it, we were pretty sure that what he had but went for a second opion becasue it affected his weight and breathing first and not his voice and legs or arms, but damn I'll be glad when this holiday season is over we use to the this time of year, Oh God please help me get through this, its been only 3 months since I lost the love of my life
    Hi Mair,
    Thinking of you. My dad was able to attend our youngest son's Christmas program dress rehearsal yesterday. I was kind of mad because his teacher wouldn't let him go up and hug my dad after the program. My husband said not to make a big deal out of it but it infuriated me because it might be the last one he can attend. We are anxiously waiting for the contractors through the VA to put up my dad's wheelchair ramp. They are taking forever even though they measured a few weeks ago for it. Will have to give them another call. Twins have their first school exams next week which is going to be really stressful since our son isn't very motivated this year. Yikes! Take care, Kim
    hi poppy62, i hope you are doing better...im sure these have to be difficult times for you...thanks for taking the time and replying ....GOD BLESS !!
    Hi Mair. How are your boys? They have been on my mind and in my prayers along with you and your dear Clive. Please let me know. Yes, your experience with ALS was whirlwind, to say the least. When I had my daughter, I was only in labor for 3 hours (my son, 2) and people told me I was lucky. I always thought, really? I just did everything you did in 1/3 of the time! To me, it was harder. I can't imagine how you kept your head together during that time. To have new worries now just seems unconscionable.

    You are never far from my mind, and I'm praying that you'll have very good news, soon. You are truly an inspiration. Fondly, Shelly.
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