Saturday, February 7, 2015

When it is all said and done, who's right is it anyway?

This is a topic that I have thought long and hard about in the past year. The right to die with dignity. I can honestly say that yes, it had crossed my mind in the past but never really deeply and never in a way that impacted me so greatly. As any reader knows, I lost my father in October 2014 - but only after watching him suffer and waste away from a debilitating disease. Of course this was emotional and painful for me, my mom - his wife of over 50 years, for my siblings, grandchildren and loved ones.

November 20, 2001 - Jessica's birth
If it was hard for us, how hard was it for him? This big burly man over 6 feet tall, almost 300 lbs. who wasted away to a man who couldn't feed himself, couldn't walk, couldn't speak, couldn't use a toilet, could do nothing for himself and dropped to a weight of  under 140 lbs in his final days. If it was hard for us, how devastating was it for him? 

My father had his first heart attack at age 49 and a subsequent much more severe heart attack that required open heart surgery almost 10 years later. This was hard for him, the first was tough but the second attack caused severe depression and survivors guilt. Dad felt Mom would be better off with him dead and hated that he was a burden and unable to do as much as previously able. He was very clear on his thoughts about the right to die at that point. He did not want to lose any further of his personal liberties or ability to make his own decisions. Yes, part of this was the depression speaking but at the same time he was vocal regarding his thoughts and beliefs on wanting to be allowed to end it all when it was time. 

My father was a religious man, right wing Conservative and anti-abortion and murder. He had strong opinions on right and wrong and black and white - but amidst all of this - he stated clearly how if and when he got to the point in his life that he was no longer able to be productive, well enough to take care of himself or was going to be in a semi-vegetative state that he wanted the right to end it all. He did not want to have family watch him suffer or to hurt them in anyway.

Sadly, his decline was slow, he started to make decisions and take actions that were highly questionable or seemed very unreasonable. Even in his state of physical decline, due to his type of dementia , he defended his actions and thought they were right. He couldn't remember everything anymore but as we sat and talked about the past, he had his memories and we laughed and cried. 

March 2014
Last March when I went to visit him, about 6 months before he died, he was already unable to do much, he did not want any life saving action and he cried loudly to me wondering WHY? Why did this happen? WHY did he have to suffer? Why was this all going on? I cried with him, I don't know Dad, BUT you can go, don't hang on for us, you can just let go. I know as I sat there, if there was a way to end his distress, I would have done it. I agonized with grief over the pain and the misery he and Mom were both in. If there was anyway I could remain by his side until the end - gone to help him daily, I would have done it. (Knowing that he would be mean, angry and hurtful to me - I just wanted to something for him and to help my mom.)

This was the moment when he should have been allowed to say his goodbyes, say I have had enough, there is no hope , my body is dying, I am starving to death, organs are going to shut down, thank you, let me go now. He should not have been forced to drain himself physically and emotionally. He should not have been forced to put his beloved wife through more agony. He should have been permitted to say - I have lived, loved, provided, done my best, made my mistakes and done what I can to right them. He should have been allowed to say it is time to end it all.

As I said, my father was strongly religious and for that reason alone the choice of dying was hard enough for him but he was also a man who fervently believed in the laws of the land. If the law had said, yes you can end it, we can provided a doctor assisted suicide - his pain could have ended. He was already down to less than 160 lbs of skin and bones at that point. He didn't need to continue to waste away for 6 more months - he didn't need to go on.

As it was, the law did not allow this. The law DID allow us to withdraw all life saving measures, no CPR, no medical treatment for illness, no antibiotics, no surgeries, no feeding tube, nothing except medication for relief of pain. Was this easy? No. We knew that withdrawing some of these measures would cause him further pain and suffering but to provide them would be to prolong a life he no longer wanted. Was this fair to him or us? No.

October 12, 2014
When his final days came, he was down to maybe 130-140lbs, bent over, unable to move freely at all. about ten days before he died, somehow he fell, he tumbled out of bed, hit his head, required multiple stitches but the true injury was the severe fracture to his spine. He did not have surgery and spent his last days in a neck brace to prevent turning or moving in a way that would sever his spine. How is this humane? Is this what he wanted? No way - he never wanted this.  In those last days, with much of his family by his side, he struggled for every breath, we could hear his chest rattling and watched as he stopped breathing for 10, 20, 30 and 40 seconds, wondering if this was it, how is this humane?

My father was strong, stubborn and he had integrity, but why was he forced to go through this? This week the Supreme Court of Canada struck down the assisted suicide ban. He needlessly suffered, my Mom went through pain, depression, anxiety, hardship and the unknown much longer than necessary; someone who needed a care bed was denied help to make space for him; the medical system was taxed to pay for someone who didn't want to be here and was waiting to die; his body was forced to struggle for every last breath, but why?

The Supreme Court of Canada now has to sit back as the government of the land creates a policy - one that will not be too liberal but one that will allow for freedom of choice. Obviously there has to be a way to attempt to prevent abuse of this legislation while permitting a persons wishes to be granted and no I don't want to sit on that board - I know it wont be easy.

I know that the right to die can be a tough choice and not everyone  will agree with it, but seeing this close up, watching the deterioration - I just don't see how this was right. I can't imagine the fear, anger, torment and anguish Dad went through. 

My father was two years older than my husband. My husband has much better health and I don't see this in the foreseeable future, but we have to plan, discuss and know what each other wants. Of course we all assume he will go first, being 25 years older than me, but what if he doesn't? What if I am first in a situation where I will remain a "vegetable"? What if I am in a situation that I can't recover from?

This is what I want - If I am injured and I won't recover - let me go. If there is no hope, then let me say my goodbyes and let me go. Why is it OK for us to make that decision to "put an animal down" if they are dying? Why is it OK that when a family member is injured in an accident and their body reaches a certain state - that we can "pull the plug"? No, I don't equate a human to an animal - but if we thing it is wrong to let a dog or cat suffer, why is it permissible to allow a person to suffer?

I am supportive of this recent decision and I know many people wont be - some based on religious beliefs - and I won't argue those with you. However, please understand that having watched someone I love go through this - who, if he had the legal choice to leave while he still could - likely would have. Having been in a situation where I saw my two year old lying in the hospital in critical condition - and I may have been faced with a life saving decision - other people were - they had to make those choices - I was fortunate to not have to do that . I do believe that what I am feeling is not wrong and I do believe I have the experience to support my decisions.

I hope that I am not faced with such a choice and I truly hope that I wont have to help my husband make those decisions, but that may happen and if it does, I hope that we will have the support of the law, medical society and family. No one wants to be in pain or watch a family member suffer needlessly. 

Dad, I am so sorry that this decision was not made a year ago - I am so sad that you had to go through such agony and I am so sorry I couldn't make it better for you, like you did for me, when I was a little girl.

RIP Dad April 17, 1939-October 13, 2014

Memorial Service


4 comments:

bev johnson said...

It's always touches me when people are brave enough to be honest about their emotions. My dad had Parkinsons for 11 years (6 of those in a nursing home). I still miss him dearly, but I wouldn't have wanted him to continue living such a diminished life just to provide me with his company

...Sarah Sherman said...

Thank you Bev for your thoughtful words. Like I said, they were his wishes but they may have changed when presented with the options, but we will never know. I am sorry for your suffering and pain as well! Take care.

Anonymous said...

So sorry for your family's pain and anguish having to watch your father deteriorate and suffer like that. He is at peace now and I hope that writing this has helped you to find a measure of peace. Thanks for sharing your story. Lee Last, South Africa

Anonymous said...

Well told story and well reasoned. Thank you. No explanations necessary. The monster mental disease can hit each of us when we least expect it even in younger years: beware!
The medical system and its practitioners are mostly useless: that is what i experienced when caring for my wife and soulmate. Endless patience, love and compassion and familiar surroundings are required.
But in the end we cannot fulfill their last wish yet: to die with dignity and without pain.
Let us hope the legislation is written without being twisted and contorted so it becomes useless...