Five Wishes

Wednesday, 15 November 2006

Last night's ALS Support Group meeting was emotionally draining. A retired nurse/speaker presented information on Five Wishes, a form/booklet which should be filled out by all individuals before they need to face end-of-life decisions. The book acts as an advanced health care directive, and is a legal document meant for those who eventually will no longer have the capacitiy to make decisions for themselves. We watched video testimonials of those families going through such angst and stress when trying to decide what they think their loved one wanted because they didn't have anything in writing. We reflected on the controversial Terri Schiavo case and went through the booklet page by page, examining the statements that outlined what kind of care the individual wants in the hospital (from getting the soiled sheets changed to getting massages) to wanting a ventilator in order to be kept alive to wanting to be cremated or buried to whom should be designated having durable power of attorney.

The videos were powerful and I noticed some people crying. I held it together well until Lisa came over to say hi to my dad. After her stay in the hospital last month, her health continues to decline rapidly, she is losing weight, her mucous buildup is so great, and she now has to consider whether she wants to get a tracheostomy or not (which leads to a ventilator). My dad told me, in his faint voice, to put his hand on top of hers. Unlike my dad, Lisa still has movement in her hands and arms, though her respiratory condition is worse than his. She held his hand as my dad told her that they are here for each other and that "We...will...get...through....this...to..gether."

That's when I lost it and I felt the tears streaming down my face.

He joked about how my stepmom says he only wants to come to these support group meetings to see all of his girlfriends. I told Lisa that my dad always mentions her and how he wonders how she is doing. She said she always thinks of my dad and us.

As Lisa held his lifeless hand, her words struggling to come out clearly amidst her garbled speech and drool, my dad took every breath between his words to communicate with her.

He hardly ate anything tonight and needed to take a Tylenol for a headache (I think from the lack of oxygen), but he was happy to see his friends.

If I had five wishes right now, I think I know what they would be. But, hardly ever do we sit down and think about the five wishes we might need upon dying. Tonight's speaker emphasized that creating a document in writing helps to ease the stress and pain and conflict that often arises when a loved one becomes incapacitated and unable to make decision for him/herself. As ironic as it sounds, it actually helps you to focus on living and enjoying the life your loved one has left without having to worry about those huge decisions that will need to be made when one is on his deathbed.

Lisa, in her late 30's, and my dad, in his late 50's, may currently exist in dying bodies, but through their battles with ALS, they are learning how to live, how to cope with their bodies degenerating, becoming dependent on others for care, and learning to appreciate and enjoy every minute of their lives that they have left.

Ultimately, this is probably the best gift they could have given me...To see them comfort each other in times of physical weakness, yet to see them full of so much emotional strength. If I haven't already learned many lessons over these past two years of caregiving, I am certainly learning them now, learning how to value my friendships, family, and the people around me, learning how to forgive and let go of mistakes made in my past, learning how to live each day to its fullest...

In one of my favorite shows, "Six Feet Under," a character asks, "Why do people have to die?" and the main character responds by saying that it's "to make life important". Quite simply, I'm LEARNING HOW TO LIVE.

If you had five wishes, what would they be???