Message From Courtney -

Hospice care began for Mom in early May. The nurse comes Tuesdays and Thursdays to check on her vitals, adjusts medications as necessary and ensure she has all the equipment and other things she might need. The hospice bath aide comes Monday and Friday. She has also had volunteers come to be with her to give Dad a break. One of the first things the nurse did was insert a catheter as the frequent trips to the bathroom were getting very hard on Mom.

Mom has limited mobility left in her right leg and right hand, but we have noticed the strength diminishing quickly. Because of the decreasing mobility in her right hand, Mom rarely writes any notes at all. Her main communication is grunts and small hand motions pointing to what she needs. She spends all of her time in her lift recliner. She has a hospital bed with a very nice Select Comfort mattress, but she feels more comfortable being in her chair. Dad sleeps on the couch as she needs him throughout the night - feedings, stretching or just help with scratching an itch.

Many of you have asked if she is in pain. She is not, but she is uncomfortable. As we have learned, it is the respiratory problems that are fatal with ALS. Mom’s breathing is sounding pretty awful. At its best, she breathes quietly, but at the worst, her breathing sounds like snoring. She has a lot of excess mucus that can be somewhat helped with a suction machine and “cough assist”, but it causes her a lot of difficulty.

The nurse came out yesterday and was worried by her condition. She had slept all day yesterday and was really "out of it." I am with her now and she is in the same condition. She wakes briefly, but seems very disoriented and will lift up her chair when she struggles to breathe, but once it settles down, she lowers it again and falls back to sleep. Until the last couple of days, she had filled her time with watching Ellen (her favorite talk show), soap operas Passions and Days of Our Lives or just about anything on the Animal Planet - mostly Emergency Vets. Since yesterday, she has slept so much she hasn’t even watched TV.

Dad is doing such a good job. He is so lovingly attentive to Mom and it is so wonderful to watch him with her. He understands all of her grunts and motions and seems to always know just what she needs.

Many of you have asked what you can do. This is very trying on my Dad and any help from family and friends to come out to give him a break is much appreciated. Just call Dad ahead and plan a time that works for you. It can even work to come over even if Dad doesn’t leave – it gives him a chance to get things done around the house or yard. Also, any home-cooked meals for Dad are appreciated.

We so appreciate your thoughts and prayers. Mom’s next appointment with Dr. Ravits is this Wednesday, but we are not sure at this point if she will be able to make the trip. We will keep you posted.