More on Deciding When It's Mom's Time to Die -- Giving Dad Time to Accept Mom's Illness
In writing about the agonizing decisions that our family has faced as Mom has succumbed to Alzheimer’s disease (and Chronic Obstructive Pulmonary Disease), I’ve tried to reflect on the decisions my family and I have made, both good and bad. Obviously people can take issue with what we decide, but ultimately, it’s our family’s decision. What I hope to do in writing this blog is to use our stories to prompt others to think long and hard about what they are doing in caring for their loved one when critical times come. So I’m not surprised that I’m seeing different viewpoints expressed by readers about my recent blog, “Story from the Front Lines: Deciding When It’s Mom’s Time to Die.” I thought I’d take a moment to respond a few of those comments.
First of all, I want to thank the second respondent about her comment suggesting that perhaps the doctor was doing Mom a favor in letting her die. I have to admit that at times while Mom was in the hospital and then while she was in rehab afterwards, I had similar thoughts. Was I wrong to push for treatment? Should I have let Mom quietly succumb to the infection that was attacking her lungs? A lot of arguments can be made supporting the viewpoint that I was selfishly keeping Mom alive. Mom had officially been diagnosed with Alzheimer’s disease in September 2005; the hospitalization that I described was in January 2006. At the point of her hospitalization, Mom was in moderately severe/mid-stage Alzheimer’s disease (as described by the Alzheimer’s Association). So perhaps because Mom still knew me and could still function on a limited basis, I wasn’t ready for her to die. I admit I was still in shock by the whirlwind of events that had happened in September 2005 and was still figuring out how to let go of the mother I used to know. Perhaps I should have let her go when a situation presented itself.
There were other considerations, as well, in making that decision to seek treatment: I may have unconsciously been putting my family’s welfare ahead of Mom’s situation. While Mom’s mind was succumbing to dementia and still living at home, she and Dad were having verbally brutal arguments on a daily basis (something that hadn’t happened during their 50-year marriage). This delay in Mom’s death enabled my father to come to terms with Mom’s illness (since he didn’t move to this area until October 2006 since he was closing down their homestead in West Texas).
This period of time gave my parents a “sabbatical” since they didn’t see each other on a daily basis (although Dad did drive down to visit Mom almost monthly). That time away enabled Dad to come to terms with his guilt about his part in what happened; since moving here, he has visited Mom on almost a daily basis and has actively worked at repairing their relationship.
Dad still experiences some guilt, but he has been able to see the return of the warmth in Mom’s eyes when she sees him. Therefore, I believe that if Mom was in her right mind and knew all of what had happened over the previous 2-3 years, she would have chosen to delay her death to make sure that Dad was able to function again emotionally for the remainder of his life (something he wasn’t doing well in the months both proceeding and following those critical events of September 2005).
Finally, I want to make one last point about the situation I described in my previous blog. If I had been willing to consider letting Mom die on that January day, I would have wanted first to have an actual conversation with a doctor who would have discussed the pros and cons of this decision, instead of making this decision on his own. My family and I had never met or even talked on the phone with this doctor, who was assigned to Mom’s case in this emergency situation. He had never laid eyes on Mom to know what her situation was, other than a bunch of numbers and other doctors’ diagnosis that were in her file or were relayed by the nurse.
Having worked professionally at the other end of the life spectrum (in public schools), I believe that parents have every right to be involved in the critical decisions that educators make. Educators serve as the professionals, but what they do has such a profound impact on the child (and the family), it is critically important to include the parents as part of the educational team and also to encourage them to embrace the essential – and at times difficult - responsibilities they have as parents.
So why should end-of-life care be any different? I firmly believe that there should be a medical “partnership” between the doctor and the patient (and with the family, in cases of dementia). We as family members need to be involved in the decision making, and also accept our responsibility for the decision that is being made.
I do not think these types of critical decisions concerning life and death should be delegated to a doctor to make alone who doesn’t even know the loved one. So if the ultimate decision is made not to fight (as noted in Dr. Atul Gawande’s book Better), my family and I demand to take part in that decision-making process. The next time around, we probably will decide not to fight, but at least we will know that we had a say in the decision about the end of Mom’s life.