Parents and loved ones need to do this: Discuss what you want!
My Mom's greatest gift to me was she told me her wishes. She told me what she wanted, for the time when she wouldn't be able to speak for herself.
Knowing if one wants to be buried or cremated is just a smidgen of the wishes of our loved ones.
More importantly, HOW do they want to pass away? Do they have a DNR (Do Not Resuscitate)? A Living Will? Who has Medical Power of Attorney? Do they want to be kept alive as long as possible on breathing machines? Or let go in more peaceful ways?
These may seem like all busy-work type of discussions that are uncomfortable, but from my experience what is MORE important than ANY piece of paper is the KNOWLEDGE of what your loved one wants for their care; for the times they cannot speak for themselves.
Although my Mom wanted to be cremated, more importantly, I also knew HOW she wanted to pass away: specifically, if possible, peacefully in Hospice.
She told me she did not want to be hooked up to machines in a hospital room, left to die. And, I knew if the question was ever asked, that yes, take her off life support.
She did not want to be a vegetable, she wanted to die peacefully. And she wanted to be pain-free. And she wanted me by her side.
One of my coworkers stood at the bed of his dying Father. His other siblings and his Mom were all there. Everyone was upset. Crying. Then, the family turned on each other.
The family had to decide what to do with their dying relative. His organs were failing and the doctors needed to know their wishes. Some wanted to keep Dad alive and have the doctors do all they could to keep his ailing body alive for a few more days. Others wanted the suffering to end.
But...
What did DAD want?
It caused a lot of emotional scarring that to this day have not been healed; some of the family members do not speak to each other because of that day 6 years ago.
In the end, their loved one passed away from organ failure 24 hours later. But in the meantime, the family did not agree what to do and did not know their Dad's wishes.
For 4 years, my neighbor (David, a Chaplin) visited my Mom every stint she had in the hospital. That's probably over 50 times. As a Chaplin, he visits families and patients ALL day long. However, Mom was always sent to another hospital (not his) because of her insurance. So, David would visit us as our friend. And he would have to travel from his hospital to hers, to come see her all the time.
The VERY first time he came to visit us in the hospital about 4 years ago, Mom and I were leery. Would he talk about God the entire time? Would he overstay his welcome? What would he say and would we feel comfortable or uncomfortable?
He came in and while my Mom slept he asked me, "do you know your Mom's wishes?"
I looked up at him, "Yes I do."
"Good," he replied. "That's the single most heartache I see is when the family does not know what to do or what decisions to make for their loved ones. Good for her for taking care of you."
David is a strong proponent of Advanced Care Plans, as I am. He has invited me to speak at hospital functions and I have easily joined him, sharing my Mom and I's story of her GIFT to me.
He also writes articles and gives presentations all the time on this topic and he shares the story of my Mom and I. I feel like our story is helping others through the wonderful work David does for patients and their loved ones.
Trust me when I tell you I wanted my Mom to live longer than she did. But when my own Mom started to have "complications" (as the doctors would call it), I didn't know they really meant "she is dying."
For the last five years of my Mom's life, she had advanced emphysema. On commercials, they call it COPD. Same thing: can't breathe.
Emphysema meant she had to wear tubes 24 hours a day that flowed oxygen into her nose. And even tho she was on oxygen, she was still constantly "out of breath." She would struggle to breath and be gasping for air after any routine thing like going pee or walking to the kitchen. This meant she became extremely weak and fragile. This meant she knew that the disease would kill her some day and every day she laid in her bed and thought about death and when that time would come, and HOW it would happen.
I was scared to hug her too tight because she was so frail, but boy would I give anything to be able to hug her today.
She HATED to wear that oxygen hose and avoided going out in public because she was so ashamed.
Her nightstand was stacked with all sorts of medicines - her breathing meds for the 4xday treatments, her steroids that she DESPISED, her allergy pills, and of course her anxiety pills (b/c lack of breathing and gasping causes severe anxiety).
And, when you have lung problems, it effects the heart. So, she had numerous heart pills, too.
She would eventually have a few heart procedures and even had to have a pacemaker "installed" to help her too-rapid heart rate.
Rapid heart rates cause you to breathe faster, which is difficult for emphysema patients. It's a very vicious cycle.
She would go into and out of the hospital due to complications from breathing and heart problems for 5 years - almost 5-10 times a year. I called 911 so often, I recognized the guys who would come to rescue her to the ER.
I spent so much time at the hospital with Mom, it became routine, but extremely tough. And every time she was able to come back home, we were so happy! Her and I lived together and I was her caretaker, and our home was a safe haven for us both. As an only child, this was a very beautiful gift I could give to her.
On August 16, 2011, a Tuesday, Mom slipped at our home in the kitchen. That night the x-ray in the ER confirmed my worst fear - she broke her hip. I stayed with Mom all night, as she slept with pain meds.
Wednesday she had a successful surgery to fix her hip. They moved her to ICU right after the surgery. She didn't wake up that much anymore and would barely open her eyes when I tried to talk to her. But, she mumbled a lot that she loved me when I told her I loved her.
Thursday I spent the entire day again with her in ICU as the nurses gave her drugs to work on her liver or heart or breathing or her urine.
That Thursday night, I asked the doctor on duty when Mom would be moved to a regular room and out of ICU. I was anxious for her physical therapy to start. The doctor looked at me funny and said softly, "You're Mom may not make it through the night."
Wait. WHAT?
You see, no one told me how bad my Mom was. The docs and nurses were in and out several times a day trying to get certain organs working properly again, but she always responded well to treatment. What I didn't know was Mom was actually dying; her organs were failing. The treatments were only temporary fixes.
Her heart doctor said the break of her hip bone probably caused a clot to get loose in her body and they did not know that right away and it caused all the complications.
I cried and wept to the doctor and I finally said, "I need to invoke her DNR."
Mom's body would be in shambles if she had a heart attack and they tried to revive her, so I painfully invoked her DNR. But, it's something my Mom and I talked about, so I knew I had to do it.
Here is something I want to be VERY clear about.
Not ONE person asked me for her paperwork. Not one person even asked me if there were other family members. I stood there and they took my word for everything. While I am glad they believed me what my Mom's wishes were, they did not ask for her Living Will or if I was her Medical Power of Attorney.
The head nurse would not let me stay overnight in ICU and I was LIVID. I shouted to her in the ICU, "if anything happens to my Mom overnight when I am not here, this is on YOUR hands!"
To not let me be with my Mom the potentially last night of her life after being told she may not survive the night was HEART WRENCHING and almost, literally, unbearable for me.
I drove home that night in a daze. Only ten minutes away, I told God that I knew he would not let my Mom pass away over night. That he would not take her away from me without me by her side, and her alone.
The very next morning, I immediately came to see my Mom. I had not received a call overnight and knew God would let us be together again.
As soon as I got there, I tried to talk to Mom but she was even more unawake.
The doctor on shift pulled me aside in a separate room. My neighbor had JUST shown up (David, the Chaplin) to visit us. My Mom's favorite home health nurse (Mikey) also came by at that time. She stayed with Mom (who had been unconscious and non-responsive for over 12 hours) while David and I went to another cold, dark, lonely room with the doctor and a different head nurse.
The doctor told me my Mom was dying. He said they did all they could, but she was not going to live much longer. He then told me I had two choices. They could try to keep her body alive for a few days with medicines and keep her comfortable, or, they could stop all the work and she be sent to Hospice (also pain free).
David sat next to me and cried. I grabbed a tissue and as hard as I could, I mustered the words out of my mouth, "Take her off the breathing machine now." I spoke defiantly. "My Mom would not want to be here like this, hooked up to all these machines. Take her off now."
I have no regrets. I have no guilt. I gave my mom what SHE wanted. And that in return gave me peace with my decision. What she gave me, was truly a GIFT.
I cannot begin to express how I had no anguish over what to tell the doctors. It was extremely difficult to SAY, because I knew that meant my Mom was going to die soon, but I also knew my Mom's wishes. And I needed to speak for her. I was her advocate til the end.
As I sat in Hospice with my Mom for the next 6 very long, quiet hours, I watched her and talked to her and held her hand. Almost 11 hours after the doctor talked to me, Mom passed away peacefully with no pain, in Hospice, with me by her side.
It's very difficult for me to share this story because of the tough memories, but I WANT to share it so hopefully others will talk to their family members to tell them what their wishes are.
Make this part of life/death "easier" by expressing your wishes. PLEASE.
Give this gift to your children and/or significant other and/or brothers and sisters.
