“I want to go home.”
As I stated on the last post, Karen’s last audible sentence to me was just that. It broke my heart to tell her she had to stay in the hospital as I walked out the door. So, her words haunted me into Tuesday morning.
Just after I arrived, I got a text from a friend who happens to be a doctor here in Spanish Fork, and he asked the following:
Are the doctors giving any suggestions for a timeframe to monitor for recovery? I general I would not recommend longer than a week if nothing changes.
I know this was a difficult text for him to write, but it opened the door to a series of difficult but necessary actions on my part.
I honestly did not know how long to anticipate Karen having to endure this horrible process. But now, thanks to this text, I had the courage to ask.
When the kidney doctor came in, I asked him to give me an honest assessment of his path forward. What timeframe was he looking at? He told me that any further treatment beyond the end of this week, without demonstrable improvement, would yield little medical benefit.
I then asked two other doctors who have been caring for Karen the same question. They both said they would like a few more days to see if she responds to the treatment but after that they saw no real benefit to continue.
So, now I had to make a difficult decision. Should I continue treatment past the recommendation of the experts or should I take charge and make that decision on Karen’s behalf. But to go down that path, I had to let go of my cautious optimism and face a cruel reality – Karen is going to die.
Of course, I have no experience making a life and death decision for anyone, let alone my wife. So I felt that best thing to do was gather all the information I could to see what options were available. I had several lengthy discussions with the staff here who have the experience I lack. As a result, I developed the following plan.
We will continue the current treatment as prescribed by the doctors until Friday morning. If there is no major improvement, then we will disconnect her from all food, medicine, and dialysis and take her home on Friday. In short, I chose to honor her request and take her home.
This decision did not come without a powerful wave of emotion that was anticipated and necessary to express. At times, I have my emotions under control, but tears lay just below the surface. I hate to cry. Sometimes you have to do what you hate.
I called all my children to tell them of my plan to get their input. Then, to make sure I was lucid when crafting the plan, I had my friend, who sent the original text, come over and listen to the details of my decision to make sure I didn’t miss anything.
When I came into the hospital this morning, I asked for the doctors and social worker to assemble as soon as possible. While awaiting that meeting, I contacted my insurance company to find out if they covered home Hospice care. They do. For those unaware, Hospice care is reserved for those who are dying in a short amount of time. Hospice workers are authorized to administer pain medication to make sure the person dying is as comfortable as possible. I will have the Hospice vendor selected today.
To be clear to all this means I am anticipating Karen’s passing as early as Sunday or Monday. Once we have her home on Friday we will open our home to all visitors until she dies.
Of course, this is not the path any of us wanted. But I feel it is the best path available to her now. I don’t like it, but this process is not about me. It is about her.
I appreciate all the comments made by texts, e-mails, and Facebook. For those local, if you want to visit, her, I will post on this blog and on Facebook when visits can start.
While the emotions are raw and will be for some time, I was happy to tell her that I will take her home.
If this is your first post, please click here to get the full story of Karen’s Health Journey.