Tuesday 28 July 2015

Walk a mile...or just a few steps in someone else's shoes before you judge!

Less than a month ago my uncle passed away. He and his family knew there was nothing doctors could do for him, his illness had progressed too far. His children and wife were left to make decisions about everything. I messaged my cousin and told her to let me now if they need anything, tell him I love him and I would try to get to see him. I didn't see him before he passed. This past weekend I attended his memorial service.

From admission to hospital to memorial service, his children and wife had tough decisions to make. Their responsibilities don't end there; there is months of paperwork and grief ahead of them. Describing it this way seems so simple but I can imagine all of the very difficult moments they went through caring for him day to day.

This has made me think a lot and have many emotional moments about my late brother and his care. It made me think about what my uncles family must be going through, trying to do their best to honour him.

When I got the phone call from my sister in law that my brother was in another accident and transported to Huntsville Hospital, I thought I will call the hospital, see how he is and visit in the morning (It was 2 am) After talking to the emergency treating physician my plans changed. He told me that my brother would probably not live through the night and had been transported to Toronto. I had the distinct privilege of going to my parents house and telling all of our family this news. We also had to call the police and have them contact our brother in Cochrane to come home. Cant imagine being him in that moment. We all proceeded to go to Toronto to see what was happening.

His wife and I were his power of attorney, that in itself says something, he trusted me to make sure he was treated in a way that he would like if he couldn't do it himself. It was a lot of responsibility though. It left me with many things that HAD to be done, his wife and I took care of those. We also did many things we didn't HAVE to do because we wanted him to have as much dignity as possible in whatever life he had left.

He surprised us and hung in there eventually being transferred to Parry Sound Hospital in a vegetative state.

Here's what I HAD to do:

  • consult with doctors, lawyers, physiotherapists, phlebotomists, occupational therapists, case managers, nurses, police, tow truck drivers, witnesses, brain injury specialists
  • consult with my parents and siblings about their preferences in terms of his care (there was not always agreement)
  • consult with his wife and kids and make sure everyone was on the same page
  • be there everyday to ensure he was treated with dignity
  • ask doctors to stop putting him in a wheelchair in the hallway to be gawked at by passersby
  • tell the nurse who ripped his sheets off to clean him while I was in the room that this was totally unacceptable as he would not want me to see him like that, asked her to be more mindful in the future
  • approve of a DNR bracelet put on his arm much to the dismay of my parents
  • be available by phone 24/7 to the hospital for good news and concerns
  • approve of removing all life saving treatment of illness or infection, only to leave  the feeding tube for life sustainment.
  • watched him on the last morning of his life wretch in so much pain looking me straight in the eye unable to speak begging me for something that I can only hope was to please take the pain away. 
  • ask the doctors to please give him heavy pain killers so that when my family came in to say goodbye they wouldn't have to see him like that, he would be sleeping peacefully for them and they would never have to know half of the torture he lived through in those last 7 months.
  • be there when he did pass
  • make decisions about funeral services with his wife, write an obituary
  • attend all of the services and pick up his ashes afterward, carry him to my car and place his cremated remains in his home while we determined what to do with them.
  • listen to the funeral director ask me the day after the funeral if I wanted to see him one last time and say NO with great reluctance.
  • ensure his death certificate was provided to all bill collectors, mortgage companies etc which has still not really ended.
Here's what I wanted to do:
  • be there everyday to ensure he had dignity and family around him
  • spend Christmas with him, make sure he had a Christmas tree, stocking and fave blanket with him that day
  • talked to him, kissed him goodnight every day
  • communicated with him, laughed with him, watched him interact with different service providers so we could make change as needed
  • ask the massage therapist to make him a CD of his favourite music instead of him listening to classical while she massaged him
  • washed his hair every other day
  • cut his hair as needed.
  • cut and filed his finger and toenails as needed while he had a miserable look on his face and apologize to him for having to do it knowing that it wasn't comfortable for him for me to be providing any personal care of any sort but it had to be done to maintain dignity and I hoped he would do the same for me
  • shaved his beard and trimmed his moustache every other day
  • wiped his mouth many times a day because he had no control over what came out of it
  • had naps in his room
  • posted pictures and cards from people who loved him
  • created a one page profile for the nurses to learn about who he really was and give them something to talk to him about, make him human
  • be a part of all of his services to ensure 100% quality of care
  • brought him his fave wool socks
Everything I did, I did alongside his wife who spent just as much time as I did making sure he was comfortable and cared for in a way that we believed he would want to be. We did our best based on what we thought he would want and I am totally at peace knowing that I did right by him.

Given a choice before the accident I would say "NO WAY" however, put in a position out of my control I HAD to do the best I could for him. He was my brother, no matter how emotionally difficult every day was it had to be done. I guess I am lucky that I can turn emotion off when needed.

This is the situation my cousins were just in with my uncle. They were responsible for his care and decision making. The rest of the family could offer help or pay a visit but ultimately it was up to them to do right by him. I know they didn't expect any more from us than to lend our support and pay a visit if we could. They endured all of the really tough daily stuff that I had to, they did it together.

People don't have to like how they did it or the decision they made, they did what they felt was the best for him, they listened to his wishes. They did a great job.

The sad part is that in the end people judge. Its human nature, we all do it. I catch myself often talking to someone about how I don't understand something somebody else did or is planning to do. Bottom line is every human gets to make decisions for themselves and we have no right to judge.

I decided to be 100% involved in my brothers care. I wanted desperately to understand why his accident happened, I grasped at straws and tried to make excuses but in the end only the truth is giving me peace. I don't expect anyone else to accept the truth, they get to accept whatever makes it easier for them to deal with the loss. I HAD to dig until I knew the truth. I HAD to speak with the investigating officer many many times for the investigation and also because I needed answers (he was very kind to go out of his way to do things we asked when he didn't have to, he even helped us fight the insurance company and lied so that they couldn't deny us coverage and he would get the care he deserved) I HAD to have a mechanic inspect his truck so I could have answers, just something to say he died for a reason. All I got was the truth and I HATE THE TRUTH! His wife and I were the only two people who chose to be a part of these investigations or his care on a daily basis (of course just way too much for my parents;  my siblings felt the same, it was too much for them emotionally) So we did it and we did it well. I have ZERO guilt and only so much thanks for the 7 months I spent by his side, memories I will never let go of. I know he appreciates everything I did, I know he knows the truth about what happened better than any of us. The truth was important for me to move on, I know the positive message than can come from his loss and I won't feel badly about sharing it in appropriate forums.

Last year I posted something on social media that created a very big family conflict for me. I posted it impulsively in a moment when I was very frustrated about something I am very passionate about. Granted wrong way to share my thoughts, lesson learned. Regardless the truth still didn't change. 

Recently I found out that "many" "family" members at reunions (both sides) last summer had plenty to say about their loss of respect for me and my attention seeking behaviour because of that post. This very much upset me and I have spent a lot of time thinking about it.

I am laying it at peace with the thought that, none of those "family" members or the people they get their information from had any involvement in my brothers care or dealing with all of the professionals gathering all of the evidence to close the investigation. Nor have any of them come to me or his wife to ask about any of this. We knew who was in the room to visit based on our guest book and the nurses close eyes. I have been judged by people who have no information to base judgement on. And I will be judged for this blog also I am sure but I can honestly say I don't care. I did care but have spent much time mulling this over and came to a conclusion that leaves me at peace. I know I did right, I have made mistakes, I am not perfect and I will be more mindful of judging others in the future. I have never and will never disgrace my brothers memory, his death and the truth about it is not shameful or degrading to speak about.

And for anyone who may be questioning the choices my cousins made for my uncle, remember you weren't involved and have no information on which to base a judgement. Your turn will come someday and I hope you are not judged for your decisions.

There really does come a point in life when you realize that its time to focus on the people around you who are genuine, honest and respectful of you regardless of mistakes you make or moments of indiscretion. They are not the people on your list of 500 "friends" on social media, they are those who are there when you need them. They accept you as human and love you just the way you are. Those are the people who will be included in my everyday life and I will thank God everyday for the amazing life I have. 

In the end, my brother is gone, my uncle is gone and all any of us have left is time to appreciate and live our lives to the fullest appreciating those around us whose relationships enhance our lives.



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