REMOVING A SPOUSE FROM LIFE SUPPORT
June 15 , 2008
DEAR MIDLIFE BACHELOR: I read your article (Removing a Parent from Life Support) with painful interest. I am still in a fog concerning my own experience in a somewhat similar situation - I guess I’d call it more of a nightmare. My wife, Kay, of 52 years, was hospitalized in May of 2007 with COPD and diabetes. She spent several weeks in an ICU. She was intubated three different times over about a three month period. Each time when the breathing tube was removed, her ability to breathe on her own diminished as her respiratory system had further weakened. This eventually led to a decision (by both of us), for her to go on a ventilator in July, and feeding through a "tube". Over the next few weeks she showed some improvement, but other complications developed. She was transferred to a specialty hospital for long term critical care patients in late November. Her kidneys began to weaken in November and dialysis was needed. The kidneys came back for a few weeks, but by about late February, she was requiring two dialysis sessions and then eventually three each week. She was now essentially on TWO life supports.
We learned to communicate early on by lip reading, and our own customized hand signals. I believe that all of this time, I was in total denial of what really was happening to her, and was asking the world to "Pray for Kay" with hope of her recovery. She had been hospitalized for weeks at a time over the last ten years, and I just thought that she will recover and we will go home. She had asked me in November or December, to let her go and I responded that it was not up to me but to God. I guess I was just passing the buck so to speak. I think now that she was asking me, because she knew what I was denying. I was at her bedside or at the hospital 24/7 for most of that year except for one or two stays in an ICU unit that I trusted. I slept with her every night at the specialty hospital, and left only to eat and such. In late April, her physical condition was slowly deteriorating. I think that was when I realized what the doctors and nursing staff had been trying to make me understand. I was prolonging the inevitable - just keeping her alive but in so much physical discomfort, and medication for constant pain. I know now that I was also in pain.. We celebrated our 52nd wedding anniversary on March 11, 2008 and her 72 birthday on March 12th (in an ICU unit after minor surgery on her trachea). Her younger sister died three weeks before, but I never told her. She had always asked me about her, or to call her, but she never asked again.
In early May, her condition was not going well and I wanted to take her home, but when all was considered, that was not a good decision. She would require removal from the dialysis which meant maybe a week, maybe two … but the toxins would overwhelm her and she would require sedation around the clock. I considered doing this, with a home ventilator to sustain her through the process but there could be more infections and more pain. I decided NOT to take her home but made the decision to stop the dialysis in the hospital after discussions with her doctors, but left the ventilator in place. Her doctors discussed with me that she was becoming more distressed, and was not going to make it without more suffering.
It did not take a week, and within four days she required morphine injections and other medication hourly or less to keep her "comfortable". She was not comfortable and I gave the okay to remove the ventilator support at 4:00 p.m. on May 12, 2008. She died in about twenty minutes - with me holding her hand as I had done for the past year, with a very peaceful sigh that I will never forget. Our children were with us the last week, and I am thankful for their love and support. Everyone tells me that I did the right thing for her and that she was now at rest and finally healed of all of her sickness. And I know that she is an angel now. I still question myself why I denied her peace for so long. Did I wait too long to do the "right thing"? Al Hodges
MLB RESPONSE: I am so sorry to hear of your loss. As you know, I can definitely relate to your situation - having gone through something somewhat similar with my Father ... although my Father's situation was much more clear cut and short-term in nature. I know the pain that you are feeling ... I know what you mean when you say you will NEVER FORGET what her last breath was like ... just like I'll never forget the look my Father had on his face when he died.
Concerning your question, "Did I wait too long to do the right thing?" - the answer is I don't think so. I mean - the situation developed over time into what it was ... and you made your decision when you felt the time was right. In my case, the "right thing" was obvious immediately ... but in your situation, it wasn't so clear cut for quite a while. So I think you did the right thing at the appropriate time. All of your decisions were based on your love of your wife - and that is really what counts. You are a good man, Al.
Al - I would like to publish this exchange of ours on midlifebachelor.com. The reason is - people go through stuff like this, and we seldom hear about it. And the less people hear about, the less prepared they are when situations like this happen. The motto of midlifebachelor.com is "Leverage the Midlife Knowledge", and I think what you and I have to share is very powerful stuff - which can possibly benefit many others over time. Since your story is very personal in nature, I ask that you give me permission to publish it. I can change the names, if you wish. But I do think people should learn from us on this very tough subject. What do you say? Please let me know, Sir. Thank you. My sincerest condolences ...
AL’S RESPONSE: Thank you for your kind words. I would like very much to have you publish my and Kay's story. I think that Kay would agree, and not to change anything. There are many stories within that last 12 months (actually she was only out of the hospital for about 10 weeks, not consecutively, from about September 2006, until May 12, 2008). We also spent two, what is now, very precious Christmas days/seasons, in her hospital room but together. She "had" me to redo the kitchen countertops, backsplash, appliances, and new family room carpeting. She only saw it though computer videos. I hope she has now seen it for herself. It is meaningless except that she wanted me to do it. There were many "people" that gave us support from a medical standpoint and a few, very few, that I would like to have ----well I suppose similar to what went between your father’s wife and yourself. There were times that I was so angry, I suppose at everything, that I took it out on the first person that I thought was too "casual" or such when giving care to Kay, bathing, turning her over, and even giving medication. I would urge everyone when faced with similar, to by all means be watchful and have someone present at all times. You never know how precious someone is until all you can do, is hold their hand. I cannot imagine how a spouse or family would not be. I only wish that I could have brought her home. I think she understands. I would like to attach a photo that I took in January. I was dozing by her bedside and the bed was not in its usual position from the wall, which required me to hold her hand facing the head of the bed, instead of the foot. I awoke to see this light moving across our hands and by chance had our camera in my jacket pocket. There was a very small space between one of the window blinds and the wall where the sun light came through just for a few moments. These pictures I believe truly reflect our love for each other with Gods blessing. Al Hodges