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Friday, December 28, 2012

Heartbreak & Change



I have recently experienced the worse, most painful, and most difficult decision in my life, and I hope to never be put into any similar situation ever again. EVER. It has left me forever changed and I'm still trying to cope. The events that I'm about to share here, are mainly for myself, and I warn you, they may not be pretty.

On November 24 I had a wonderful dinner, a late thanksgiving meal with my family at Red Lobster, and visit with my Mom and my sister. After dinner me and my son drove 80 miles back home. Shortly after arriving home I got a phone call from my sister letting me know she had just called 911 on Mom (appx 10:00 PM). This really was nothing out of the ordinary with Mom who has been in and out of the hospital every couple of months for about six years now. About an hour later, my sister phoned again saying that once again Mom had been intubated for respiratory failure and/or congestive heart failure, and diabetic ketoacidosis... all the usual for Mom. About 2 AM I received a third phone call letting me know that Mom was bad this time, the worse episode yet, and the Doc/nurses could not get her heart rate to slow down, and her, her blood sugar was a horrifying high at 917. My sister could barely talk from crying. By 4AM my son and I were back in Phoenix. We caught 3 hours of sleep before heading to ICU at 7AM to see Mom, the first of many visits. A few days later we learned she also had MRSA in her lungs (the second time), and she kept building fluid around the outside of her lungs which required a drain tube in her right lung, and periodic fluid withdrawal from her left lung via needle...this continued the rest of her stay.

Two weeks later the Doc informed me that they could not get Mom off the respirator and we needed to make the decision to do a Trach; remaining on the respirator with that tube down her throat was not an option.  Her throat had closed around the tube; it had to come out. The Docs believed that once they did the Trach, Mom would still have the respirator to help her breathe for awhile, hooked to the Trach, but she would recover quickly and would receive a talking cap so she'd be able to talk; the Trach would be temporary but once stable enough, she would have to be moved to a nursing/rehab facility as a step down before being strong enough to come home. At this point they were lowering her sedation every morning to wean her off the respirator, so she was awake and communicating the best she could via nodding, and writing. Mom agreed to the Trach but she was not happy about it.

A couple of days later (December 5th) the Trach was in, and that first day she was able to tolerate breathing on her own for 12 hours... the following day only 6, then each day she tolerated it less and less, having episodes of panic and respiratory failure which began triggering heart failure. Instead of improving, she was declining. My concern grew, and I feared I would have to make the decision to let her go. I spoke to the Doc about my concerns and Mom's wishes, and I gave the nurse a copy of Mom's Living Will.

Two more weeks went by; she was mostly sedated the entire time, no longer able to tolerate breathing on her own without going into heart failure. I sat with her and held her hand for hours the weekend of December 13-16, crying silently off and on. She was unresponsive and sedated the entire time. It was during those days that I lost all hope, knowing in my gut that she was not going to come out of it this time. On December 17 the Doc informed me there was no hope of her ever coming off the respirator, and her Living Will clearly stated her wishes; it was time to set a date to take her off life support and let her go. I spoke to my sister, and my sons, my cousin, my Uncle. We were all in agreement that Mom did not want to exist that way. I set the date for the morning of December 19th, giving my cousin time to fly from out of State to be here.

We (me, my sons, my sister) went to visit her early on the morning of December 19th. My daughter-in-law brought my grandchildren into the hallway outside their Great Grandma's room where they could see her from the door and blow her kisses goodbye. The rest of the family and two very dear friends began gathering at 9AM. Mom was taken off life support at 10AM. We all gathered in her ICU room in our gowns, masks, and gloves. We said our goodbyes, held her hands, stroked her forehead and hair, talked to her, shared stories, and just talked...for hours, and the entire time we watched for any signs of distress or pain (frowning, etc). We made sure she remained heavily sedated and comfortable.  It was a horrible heartbreaking experience, watching her slowly decline, the noises from her Trach, etc. Although she remained peaceful, it was ugly for the rest of us. In the last 10 minutes or so, she opened her eyes and looked right at me and my sister who was standing beside me. We continued to tell her we loved her and it was ok to let go. I urged her to take Dad's hand, telling her: "Mom, do you see Dad? He's there waiting for you. He's smiling and reaching for you, Mom. Take his hand and go with him. It's ok. We will all be ok. You can stop fighting now and be at peace. Don't worry about a thing. We will all be ok." ...etc, etc. She passed away at 4:04PM, and then, and only then, I allowed myself to fall apart... we all did.

That night her and Dad visited my youngest son (Drew, 20). He said he was awake when they came; they smiled at him and he felt peaceful. A couple nights later, without knowing about his brother's experience, my oldest son (Clint) had a visit from my Dad. Dad assured him everything was going to be ok and to tell Cid and Charlie that him and Grandma love them. My son didn't know who Charlie was though; he knew Cid was the nickname my Dad always called my sister, but who was Charlie?

As an adult my Dad always called me by my regular name...however when we were kids he bestowed me with the nickname Charlie. When my son told me that my Dad said to tell Cid and Charlie him and Mom love us, I cried...and I knew without a doubt that Dad had really visited Clint. His experience really helped me and gave me peace of mind... but, it still hurts, and I miss Mom (and Dad) so much.

Mom and Dad were reunited just in time for Christmas; their first Christmas together in almost 7 years. I imagine it was a joyous occasion.

Now I am faced with my duties as the executor of her estate. I have no idea what the hell I'm doing or what to expect next. I'm flying by the seat of my pants. I have a freebie appointment with Mom's attorney next week, then we shall see what the next step is.

Change... sometimes Change is damned hard, sometimes it's scary, and sometimes it's heartbreaking. Right now though, it's all three.