Have you ever wanted to howl at the moon? Throw things? Rage at God? With your eyes filled with tears of both sadness and acceptance?
How did this happen? Our plans always included living full, healthy lives followed by a quick death, preferably together.
That’s not what is happening.
Frank was born legally blind. He has a master’s degree in social work. He had a successful professional life in substance and alcohol abuse treatment. He had leadership roles in many parts of his life.
We have two grown sons. Our younger son, Mark, is getting married this month. His older brother, Brian, is also engaged.
Again, how did Frank end up in hospice?
He has been living with multiple chronic diseases for twenty years or more. Each condition has been holding its own. Regular appointments with specialists all end with similar comments. “Everything looks the same. Come back in 3-6 months.”
Yet, each is taking a toll on his body, wearing it out bit by bit, each organ becoming less able to do its job. A couple of years ago, Alzheimer’s Disease was added to the list.
His body is getting tired.
Late in August, he developed a urinary tract infection, his second in five months. Part of what happens with this for him is the total loss of strength in his limbs. He becomes bedridden. This time the infection moved into his kidneys and he was hospitalized.
Thus began the roller coaster ride that ended in coming home with hospice care.
The first few days in the hospital, Frank was subdued, initiated no interaction on his own, wanted the lights down and the television off. Prior to this, at home he wanted the lights on in every room to augment his limited vision and always had the television or a radio on. He was nauseous the entire time so wasn’t eating at all. He was ready to die and said so. Monday evening he had a heart incident and was transferred to ICU overnight. While in the ER on Saturday he had said he wanted no extraordinary measures taken so the next morning he was transferred back to a general bed.
I called our sons and Frank’s sister, Jan, early Tuesday morning. It appeared that he might have only days left in this body. The boys and their fiancés got in that afternoon and Jan arrived on Wednesday. By that afternoon, he had perked up enough that the recommendation was hospice at home rather than in a facility.
The house was cleaned and furniture rearranged by “the kids” so a hospital bed could be brought in Thursday morning. The dining room is now Frank’s bedroom. He eats and drinks a little every day. Yet, he is still too weak to get out of bed under his own power.
An added complication, was the threat of Hurricane Florence approaching the Carolina coast. We live in the very southern tip of South Carolina, just north of Savannah, Georgia. Only days after coming home from the hospital we had to make a decision about evacuation. Compassus Hospice would arrange for Frank to be moved to a safe facility, hopefully remaining out of the path of the storm. I would find a pet-friendly hotel for our cat, Tuxedo, and myself, hopefully near enough to Frank that I could visit him.
After studying maps from the National Hurricane Center and a lot of prayer we made the decision to stay at home. It proved to be the right decision. However, making the decision and living with it as the hurricane kept shifting its path added to the stress I was feeling at the time.
It’s hard to tell which direction the roller coaster is going these days.
As I reflect on my feelings over the past few weeks, they have run the full gamut from rage to sadness and grief to acceptance and back again.
Do I want him to make his transition now? Only if he is ready. He has lost so much over the past few years – parts of his personal identity and physical independence. The course of Alzheimer’s is known to be downward.
Do I want either of us to have to go through the rest of a glide path that could take years? Only if his soul requires it.
So, what are my feelings now? Still on the roller coaster. Sometimes my eyes are filled with the tears of anticipatory grief. Other times with the joy of shared laughter in response to a familiar line in a televison show.
My periods of rage are fewer and further apart. Parts of my husband are still with me. Many parts are now hidden from me by the destructive elements of his many diseases.
My mantra now is to live each day as it comes. Let tomorrow take care of itself. Surround myself with images of love rather than ones of anger and rage.
As Dr. Catherine Ponder says, “I have unshakable faith in the perfect outcome of every situation in my life, for God is in absolute control.”
Has rage been a part of your life? Have you been able to move to acceptance? Do you have a spiritual practice that has helped you through this transition? Please share your experience in the comments below.