More updates for Monday, Dec 10

(Posted on behalf of Connie) I am in full-time care 24 hours a day with Louie and it is getting harder and harder for me. I'm not strong enough to hold him up, move him, etc. My back is really giving me trouble. I also have to lift the wheelchair to turn corners in the house, get through doorways, etc. Louie weighs 200 lbs. so it's really hard for me.

I called both his insurance and mine today to see if I could get Home Health Care where they do all the heavy things and are here to help whenever, but neither insurance covers that. The hospice nurse who is assigned to Louie was here today for the first time. She is SOOO wonderful - I'm SO thankful for that!!!

Louie is unable to move hardly at all anymore, plus he is beginning to have lots jerking of his arms. It is SO hard to see all this!!! My heart is breaking for what he is going through - from a big, strong man two months ago, to this horrible condition!!! I haven't slept for almost 5 nights now. He keeps waking up with pain in his hand, wrist, and fingers, so I was giving him morphine, but it wouldn't help, so now have pills from his neurologist (who I talked to yesterday) for nerve pain. Last night was the first night he slept all night. But we didn't get to bed til midnight as he and John (his son) had such a hard time saying their final goodbyes - it was SO heart wrenching!!! Then I had the alarm set for 6:00 to get John to the airport shuttle on time. So I was SOOO tired.

The hospice team called in a volunteer this afternoon to come and sit with Louie so I could take a nap. I was sound asleep when Sandi awakened me (as she had just brought dinner over) and said Louie was in pain and needed the morphine. I gave it to him, but it only helped for a couple minutes just like before. I called the neurologist's office again tonight and got the doctor on call (Dr. Englander told me yesterday that he had informed ALL his associates of Louie's condition). I have to start giving him the new pill 3 times a day to keep it in his system so the pain won't keep returning. Sandi thankfully packed up lots of things into boxes for me, and then I had a neighbor and his wife come over and get the furniture, exercise bike, etc. all out into the garage. Now I have to vacuum that room good before they get here with the bed. It will be a lot better for sure as he is SO weak now and the bed will raise up so that he can be in a sitting position which will make it much easier to get out of the bed and into the wheelchair. I had to move tons of things in the garage to make room for the furniture out of that room. This is truly all so hard on me as I'm not supposed to be doing things like this with my heart condition. But I know I just have to do it.

He is very depressed tonight and just wants to lay on the couch, which is almost impossible to get off of as it is so low. I can't imagine going through this CRUEL, HORRIBLE disease - no one should ever have to go through something like this!!!! It is SOOOO hard to understand!!! I just break down crying to see him suffering so!!! My heart is breaking!!! I don't think he has much time left - things are moving so quickly now. This just all happened way too fast and is moving too fast each day. His son, John, called to say he got home safely. He thanked me for taking such wonderful care of his Dad and told me I'm doing incredibly well and how much it means to him. That was so nice. I wish John could be here more - he was a HUGE help!! And I just love him!! I pray that he will sleep all night tonight so I can get a full night's sleep!!!! I can't keep going without the rest I need at this time. Please pray for strength for me to get through this somehow.