I Want it That Way: Loss, Guilt, and Grief vs. Reason

November 14, 2011

No matter how many times you experience it, and no matter how old you are, loss is still a giant bummer, and with loss, sometimes emotions get the better of your decision-making skills.  When one has a family member who is declining, there is usually a perpetual feeling of loss (usually accompanied by some kind of guilt) and sometimes that emotion becomes very counterproductive for everyone involved.

I’ll start with an anecdote:

Several months ago, a man stopped breathing immediately before my music therapy group.  I have told a short version in another post, but I actually found out today that there was more to the story than I was aware of.  The man was a “full code,” which means that whoever was around was required to do as much as humanly possible to keep him alive in the case of cardiac or respiratory arrest.  He was an older man, maybe 80 years old, who had moderate-severe dementia and was in poor physiological health, and his daughter (also his self-assigned Health Care Proxy) had decided, in the absence of a living will for him, that she wanted her dad to live as long as possible. When EMTs and nurses were unable to resuscitate this man after trying for 20 minutes, his daughter berated, blamed and yelled at the nurses and EMTs for not doing everything they could to keep him alive.

I don’t know this woman, so there could be other issues at play, but I do know that screaming at the people who tried to save your father seems like a grief response.  In talking with a colleague in SNF-land this afternoon, I gained some insight into the process.  She suggested that I mention the responsibility that people sometimes feel for their loved ones when they are declining.  It is my guess that the woman who yelled at the nurses and EMTs was actually not angry with them, but maybe was angry at herself for not being able to keep him well or alive.  Maybe she hadn’t had time to say goodbye and she felt guilty for not visiting enough.  Maybe she was terrified of the grief that would descend in the event of his death.  Whatever the reason, though, she made decisions for him that weren’t actually for his welfare.  Not only was he older and in poor health, but the very process of saving an elderly person’s life with CPR and defibrillators can actually do more harm than good – they can come away with further brain damage from a lack of oxygen or cracked or broken ribs, not to mention the emotional stress.  Here are a couple of facts for your information:

90% of elderly patients who have cardiac arrests die despite CPR.

3% of elderly patients with dementia who undergo CPR leave the hospital and some of those suffer anoxic brain damage. (http://www.uaelderlaw.org/advance/4.html)

Would you want to be saved?

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As individuals with our own opinions, ideals, morals and values, there is no right or wrong answer, there is only a right or wrong answer for each of us.  We have the right to make decisions for our futures, and we need to take advantage of that so that someone else isn’t making decisions that aren’t right for us.

In the previous post, I discussed Advance Medical Directives and how helpful they are in assuring us that our wishes will be carried out even if we aren’t conscious or oriented enough to make decisions for ourselves.  Sadly, even living wills aren’t a guarantee not only because of guilt and grief, but also because of oversights and medical intervention, which I won’t go into.

When we write and sign living wills, the people we give copies of them to are equally as important as the actual legal documents.  This is because people become emotional, irrational, guilty and resentful surrounding loss, and sometimes make decisions based on their own feelings instead of what’s best for their loved one, themselves, the rest of their families, and the country as a whole.  People sometimes can’t emotionally carry out the actions designated in a living will and and up going against the person’s wishes because of their own guilty feelings or hesitation to let go, so it’s important to have other people aware of your needs as well as your Health Care Proxy and Power of Attorney.  Not only this, but we can’t possibly think of all of the potential scenarios that could lead to someone needing to make a judgement call, so often, someone has to make a choice anyway, regardless of how careful we are in writing our living wills, but it’s worth it to try as hard as we can so the burden isn’t placed on someone else

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Last year, my grandfather died.  He was 93, had vascular dementia and was unable to walk toward the end.  When my mom and her sisters made the decision to follow his advance directive’s orders, it seemed very obvious to me that this was the right thing to do, but he wasn’t my dad.  I loved him, and he was a wonderful grandfather, but there’s something about a parent/child relationship that is different than anything else.

Despite my many attempts to ease her mind, my mom still feels guilt and regret sometimes for not being able to do more for him toward the end (she visited him almost every day, but always felt guilty when she wasn’t able to).  She knew in her mind that letting him go was what was best for him, first and foremost, but in her heart, she felt like she had killed him.  Since he passed, we have talked about her feelings a whole lot, and she has definitely been able to move forward, but it’s taken a while.

I think it always does.

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