Miss and Dana, my heart just weeps for both of you. All you can do is take it a second at a time. I am going to answer both of you separately.
Miss, believe me when I say that I am soul sorry that you and your husband are now faced with this..Web, Matthew and I wept for days after hearing"ALS". We held one another and just wept with the shock of it. You have to give yourself permission to FEEL whatever it is that you FEEL and know that it is ok. There is a quote, "You can not Heal what you can not feel" and it is so true. You are in the first stages of grieving, Shock and Denial. There is no set pattern to the grieving or the process of the ALS. For me it is like going to war. In the beginning it was the war of trying desperately to save my husband's life. Now it is the war of trying to find the support to make him comfortable and to save Matthew and I in the process. I do get battle weary. NEVER assume "Will he provide all of the information we need to "get started" with this" Knowledge is power. Arm yourself with knowledge about ALS. Prepare yourself so that you can possibly be one step ahead of it. Arm yourself with facts and information because you will become a CALS-his voice-his arms-his legs. Prepare early. ALL PALS will eventually be in the same situation-take Dick's information to heart. I spent way too much time early in the battle researching potential treatments or a miracle cure. I spent what little we had trying to find a vitamin or a supplement that might help. Nothing did for us. ALS is relentless in it's march. What will work is a PEG so that you can keep up his nutrition. Bipap. Medications for depression, EL and spasms. Take the time right now to do the things that will give you enjoyment and heart memories. Do it now-TODAY! Have you applied for SSDI? Do it now. As difficult as it may feel, get a Power of Attorney, End of life questions concerning burial etc, Will and living Will done so that is out of the way of the moments of your life. Take a critical look at your finances and make whatever adjustments that you need to make. KNOW where all the important paperwork is, marriage license, birth certificate, SSN, titles to property, life insurance, investments, Health Care etc. You won't need it now but you will eventually and when you need it you don't want to be searching for it. Remember that you are not alone. We are here to hold your hand and give you hugs.
Dana, I bet every single one of us have spent time in exactly the spot that you were in last night. Thank you for trusting us enough to be vulnerable and share your pain. I have two thoughts, First, is he behaving badly? Is there any possibilty that he has ALS dementia? Is he depressed-on depression medications? That may very well be the first place to start to make life and love easier for the two of you. Web has had a couple of bad behavior episodes and it was UGLY and scary. We increased his Paxil and nothing since then-whew!
Do YOU have any support? I think that we need to help you figure out who is your support and how they can support you in meaningful ways. HUGS to you all and remember the sun will shine again and just breath deep-HOWL when you need too and reach out when you need too!
