Fibromyalgia and Life Lessons Learned

It has been four years now since the diagnosis and the decline has been gradual until this year.  Now, each day is a decline further into the fog of mental escape to protect himself from the fear of death.  As much as he wants to die, his fear of death prevents him from transcending peacefully.  As much as he wants to live, his fear of life as he is declining keeps him in a place of confusion to keep him from the reality of his death.   He has decided to give up and is working hard on leaving this earthly plane.  Each day he is becoming weaker and then suddenly he forgets that he wants to die and gets up and walks without his walker.   He, then, will get stuck and freeze with fear of falling.  He will freeze in position and not be able to move for fifteen or twenty minutes.  It takes coaxing, counting, touching his leg and allowing him to stand by himself and starting all over again until he can move or I get him in the wheelchair.

He has forgotten my name at times and wonders what I am doing wearing his wife’s clothes.  He frequently forgets where we live and wakes up thinking we live in a duplicate house in another town.  We have a picture of a bird on our bedroom wall and when he wakes up confused I point to the bird and he can remember our address and that he is at home.  Night time is the worst.  He can’t remember that it is nighttime and he thinks it is day time and time to get up. Some nights I’m ask every ten minutes what time it is and if it is day time or night time.   

Each day is a challenge.  Confusion reigns the day in the afternoons.  He thinks we are being watched via a two-way mirror in the TV at times.  He cannot tell the difference between a TV program and a commercial most of the time.     Clint Eastwood westerns and Quigley Down Under do not confuse him and he can understand the story line.  So we usually watch them over and over again everyday. 

Each month usually brings an episode of pneumonia preceeded by congestive heart failure.  He gets weaker with each episode. I pray that he dies before he goes into full blown Alzhiemers.  He not only has Alzhiemer’s, Parkinsons, Congestive Heart Failure, Prostate cancer, an abdominal aortic aneurysm, arthritis, GERD, and an inoperable torn rotator cuff so that he has very limited movement of his right arm.  He is in pain all day every day.  His quality of life is his fantasy land in his head and it is filled with fear and confusion.  I pray he will transition to a higher plane while he still knows who I am and that he loves me. 

I will keep him home with the help of Hospice aides, nurses, volunteers and the VA provided caregiver assistant.  He would not last a month in a nursing home.  It is time for the Universe to take it’s course and I will keep him safe at home until he decides to cross over.  We are and have been forever connected by our love.