Today was a real tough day. When Louie got up today, he could barely even stand, let alone walk. Neither one of us had slept all night, so I got him back into bed and he slept for 2-1/2 hours which helped a lot. We were supposed to go see Dr. Englander at 11:00, but I knew he was too weak for me to even get him ready and into the car. I thought about calling 911 as I was so worried, but I called Dr. Englander's cell phone instead. I told him how badly Louie was doing and asked him a lot of questions. He said that the high-resolution MRI that was done yesterday came back showing signs on the brain indicating CJD. He also said that he would be working together with Dr. Wang throughout the course of this illness. He made some medication adjustments with me over the phone and we talked at length.
When Louie woke up, I told him about what Dr. Englander said. He just broke down sobbing. Even tho he has "known" all along that this was most probably CJD, he still had hopes of a miracle. Reality hit hard today and we both just totally "lost it". We now have to face what is ahead knowing how horrible this disease is. I will NEVER understand how there can be a disease that is as CRUEL as this one!! We are devastated and at a loss for how much time we have left together.
Yesterday a Hospice Manager was here to do a consultation which lead to the decision to begin hospice service. She was SO wonderful and encouraging as far as treatment for Louie here at home. The extent of their service is unbelievable and will be a great comfort to both of us. She will be returning tomorrow to do the "admission" here where we fill out all the paperwork and she will then immediately appoint a nurse to our case. As the disease has progressed so rapidly, I am unable to take care of Louie by myself, so this service is a "God-send".
Tomorrow morning Louie is having a "swallowing and speech" therapy evaluation. His cough seems worse each day as liquids and little particles of food are going into his lungs. They will teach him how to swallow differently and also which foods/beverages will be best to consume. I worry about the cough as it is such a hard cough and tires him out.
We have gone through "ups and downs" with our emotions all day. There are still the feelings of anger, disbelief, frustration, fear and deep sadness. I feel like I'm in a "fog" and things aren't real at times.
Having Louie's son, John, arrive tomorrow will be a huge blessing. They can have extra-special time together and enjoy each other's company. I know it will take Louie's mind off everything at least most of the time.
And then Tammy will be here a week from today for 6 days which will also be wonderful for Louie - he can't wait until she gets here!! Tammy has been SOO loving and supportive which means the world to both Louie and me.
The following week will be Christmas when Steph, Pete and Gabriella arrive. I hope and pray Louie will still be able to enjoy little Gabriella as he loves her to pieces. It will be good for me to have them here - that's for sure!!
I'm so thankful that Hospice will be here throughout this illness to keep Louie comfortable and take good care of him!!
Our church family continues to be such a strong and loving support to us - we continue to be overwhelmed by the kindness, thoughtfulness and love from so many.
I find myself unable to believe that this has all happened SO quickly. It was just 2months ago that we had our professional portrait taken and Louie was fine. When I look at the picture, I cry because we were "care-free" then and everything was normal.
I know that we have to give this all to God - there is no way we can fight this battle on our own. I ask Him to help me feel His arms around me and I can actually sense myself leaning back into God's arms. This is a huge comfort to me. I have three excellent books we are reading together that Steph sent us - they give us much comfort and peace.
I will be writing on this "blog" often to keep everyone up to date.
Thank you for all your thoughts and prayers - we can't tell you how much it means!!
With tears of sadness.....
Love,
Connie
Thursday, December 6, 2007
Latest Update - December 6
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4 comments:
Dad and connie
Connie, thank you for posting this update. As hard as it is to read, it is also good to see that you feel safe in God's arms.
I pray that the two of you can keep your spirits high. We never wish something like this upon our worst enemy. It is so sad that this disease is hurting our family in so many ways.
Tell Dad to keep positive, enjoy time with you (Connie) and his loved ones, and to smile, cause God is helping to carry the two of you along the way.
Love,
Greg and Tamara
Hi Liddul Brudder and Connie
I am devastated! I am continuing my prayers, both for help to get you through this and for peace. I am really glad that Hospice is stepping in. That is a wonderful organization, and they do help so much. Because of hospice, Darwin got to spend his last few days at home, and I am so grateful for that.
None of us really knows when our time to join our dear Lord is coming, but I pray that you are given peace and understanding at this most trying time. I am pretty much cried out, myself. You are SO blessed to have a daughter such as Tammy, to help with this.
I hope that you understand why I can't come and be with you also. But I am with you in spirit, and also via e-mails and the telephone.
Your Loving Big Sister
Connie and Louie,
You are in my daily prayers. I am happy that Hospice is with you now; they are such a wonderful organization. Helping to understand and accept death as a part of life's journey isn't easy, but Hospice staff really helps pave the way for a peaceful and comfortable death. They will help you with the cares that you can't do alone, Connie, so you are free to give your time and love to Louie.
I'm with you in spirit, my friend.
Karen
Hi, Louie and Connie,
Esther sent me a link to your blogsite, and I just want to say my prayers are with you also. I can't imagine how difficult this must be for all of you.
I am a first cousin of Darwin Myers, daughter of Aaron Klein, Millie's brother, so we're related vaguely. we now live in the Black Hills, SD and Esther and Alice came to visit us two summers ago. After having been born in Minnesota, my dad and mom (and I) moved to Kingston, Idaho where they lived for fifty years. I met my husband (of 38 yrs. now) in Glacier Natl. Park Montana, and from there we moved to Alaska where we graduated college and taught in the native villages for many years.
Anyway, just wanted to say hello and assure you that our precious Lord is with you. God bless you!
Cathy Brickey
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