Hospice, communication device and thoughts
On June 23 we officially became a part of the Providence Hospice program. We have met with an intake nurse, our assigned nurse, our social worker and the chaplain. Everyone is wonderful. The nurse will come by the house twice a week to start with just to get a feel for Brian and check on his medication. The social worker has provided phone numbers to different home health agencies. We are not ready to hire anyone or bring additional people into the home. Hospice provides counseling for the family during the illness as well as bereavement. I am going to meet with a counselor who specializes in counseling children. Both girls are not interested in counseling at this time but I could use some suggestions to make it better for all of us. Brian and the chaplain are going to continue their discussions next week. She is wonderful. I have to admit I feel some relief with Hospice. The main reason is when Brian ends his journey here on Earth, it is an easy phone call to Hospice and they make the call to the funeral home. As a family we avoid the police, an investigation into the cause of death, the medical examiner and who else might become involved. It will already be hard enough without extra people asking questions.
The communication device came a week ago. At first we were disappointed, it did not perform the way we had thought it would. Brian has spent hours and hours programming the device. The saying around here is Brian looks at a computer problem and thinks, “Oh, boy a problem, lets fix it” I look at the computer and all the problems and say “lets get rid of it!!!” Our friend Tandy came over and got the scanning working and the switch access where it needed to be. Thank goodness for Tandy!! The best part of the device is the time Brian has spent on it. Since he lost the PC he has had a hard time filling his time. The machine has replaced the PC and given him new challenges. Some of our favorite sayings “Are you listening to me?” “Do not interrupt me when I am talking” “Are you talking to me?” and my favorite “I love you”. Brian lost the ability to use his voice last week. It has been very frustrating trying to talk or understand what he needs. Even with all three of us listening to his whispers we often cannot make out what he is saying. He has programmed the device to assist us all. Plus it is nice to hear Brian’s humor once more. He is a funny guy.
Brian has faced this disease with grace, a positive attitude and a no bad day motto. I have to say it has not been easy. We have good and bad days. I admire Brian everyday with his positive outlook, his smile and his eyes. They help me get through most days. I find I am the one who gets frustrated; his neurologist told us the other day- Life should not be so hard. Boy, is that an understatement. It breaks my heart to see what this disease can do to a human body. I am thankful everyday Brian sees the positive things in life. He is amazing.
We continue to take drives, see friends, laugh out loud at the silly things, smile, cry, enjoy our family and love each other. Until next time-hugs to you all.
