A Step Away From Dementia

I want to take a step away from Dementia (though it is something that both my mother-in-law and my grandmother suffered with). I want to talk about death. I want to talk about life…
As many of you know, I lost my mother-in-law to COPD & Congestive Heart Failure in April 2010. She was hospitalized for more than a week. She was on a ventilator for 5 days before it was finally cut-off. When the respirator was turned off on that Fri, I stayed by her side. The only time I left was for less than half an hour to take Dad home and hand him over to Richard.
One of the hardest things I’ve ever done in my life was to sit there for 24 hours with her, knowing that the end was coming and there was nothing I could do to help. It was unbelievably painful to watch her struggle to take 8 breaths a minute for over 3 hours. The only consolation I had was in knowing the morphine and Ativan she was receiving by IV were ensuring she couldn’t feel a thing. It was explained to me by the nurse that the hospital we were in practiced “Comfort Care”. She carefully outlined what that involved. As a family member, and her caregiver, I had the right to tell them when I thought she was in pain and they could give her extra morphine. They couldn’t do it unless I told them to give her more relief. She explained that it would slow down her breathing and enable her to die more peacefully and completely pain-free.
Another of the hardest things was explaining to Dad that he had to tell Mom it was ok to die. And one of the most beautiful things I’ve ever seen was her doing exactly that after he said it. She died with dignity. The two most profound moments in life are birth and death. There can be beauty in both.
6 months after Mom passed away, my beloved sister-in-law got up on 10-10-10. She fixed herself a glass of milk and a cup of coffee, sat down in her favorite chair, turned on her favorite movie channel, sat back and her heart stopped beating. Not a heart attack, a heart disease that no one knew she had. But the look on her face was one of peace.

On Feb. 28th, my oldest daughter gave birth to a baby girl, 7 weeks early and weighing only 4 lbs 8 ozs. Naturally, I got there as fast as I could. 11 hours later, I saw my new granddaughter for the first time and my heart filled with love. That night as I stood next to my 92 year old grandmother’s bed, she held my hand and said, “I just want to go home, Baby.” She had made similar statements many times in the recent past but this time, I knew in my heart, was different. I shivered as my heart filled with love.
The following morning she had difficulties that brought the hospice nurse out. My grandmother was in end stage COPD, a result of being in Congestive Heart Failure. It was quickly apparent that she was sliding downhill at a rapid rate. No more assisting her out of bed. No more solid food…soft foods and liquids only. All medications were to be crushed and mixed with pudding or yogurt. At 2 a.m. the following morning, I attempted to give Grandmama her meds, unsuccessfully. The nurse-practitioner (a family friend), officially declared that she could no longer swallow anything but liquids and she was removed from soft foods.
By the next morning, Hospice had taken her off liquids as well and it was decided to begin comfort care medications by mouth. Most commonly used is a combination of Ativan and Morphine. It is measured into a syringe and slowly administered under the tongue. It is massaged into the skin by rubbing the cheek, chin, etc. closest to where it is placed under the tongue. There were Certified Nursing Assistant’s there throughout the day but they can’t legally administer the medications. I, as a family member, could. So, I did.
Here, finally, was a gift I could give my grandmother. She had given me so many amazing gifts throughout my life. She gave me the gift of life itself. She gave me my morals and ethics. She gave me the capacity to love unconditionally. I could make a list a mile long but I won’t because many are too obvious for words. I felt overwhelmingly honored to know that I could help her pass painlessly…peacefully…with dignity.
The peace that surrounded me throughout the night showed me a beauty I had never known. I watched her snoring for several hours. I watched her breathing patterns change. I listened as her snoring stopped and her breathing became shallower but quieter. I watched her pulse change as the night wore on and I knew what the changes meant. And I administered her medications, on time, every time.
I knew at 6:00 a.m., when I gave her the last dose of medications, that it wouldn’t be much longer. I was shocked to discover I wasn’t heartbroken to know the end was near. I have never in my life known such peace as I felt at 7:13 a.m. when she took her last breath with my hand resting on her chest. My angel had gone Home. God was with me the entire time…and He was with her. And He got my attention once and for all.
With every turn my grandmother took for the worst over a 36 hour period, my granddaughter took a turn for the better. There is no doubt in my mind that the two were connected. As my grandmother was in her final moments, the baby took a turn for the worst that put her back on the machine we had just gotten rid of. She rebounded quickly after Grandmama passed on. I am blessed to have witnessed such things.
Life and death are completely entwined. They go together hand-in-hand and will for all eternity. You cannot have one without the other. And there is beauty in both. We must simply open our eyes and our hearts to see it…

Why I Took A Hiatus From Here

My head is reeling and my heart is weary over the events of the last month. On Thursday, June 10th, as I was cooking dinner, Dad called out that maybe I should run him over to the hospital because he was having chest pains. I asked him if I should call 911 as I settled him in his chair and ran downstairs to grab my purse. He said no. I was trying to figure out how to get him to the hospital and do CPR at the same time if I needed to. Before I could make it back upstairs (less than 2 minutes), he yelled that maybe I should call them after all. I was dialing as I ran back up the stairs. I took his blood pressure as I gave the dispatcher our information. It took 7 attempts (ERROR, ERROR, ERROR…) before I got a reading of 258/139. I practically yelled the numbers into the phone. I was assured that the ambulance was on the way just before I hung up the phone. I prayed frantically as I took his BP again 253/138.
I was so relieved when EMS arrived. Dad told them he had already taken 4 Nitroglycerin tablets as I was informing them of his shallow breathing, chest pains and extremely high blood pressure. One of them asked me if I had given him an aspirin. When I told him I hadn’t, he immediately gave one to him and told him to chew it up. I had no idea this is something that should be done with a heart patient if the Nitro doesn’t work. In many cases, it can be the difference between life and death to anyone having a heart attack.
I was relieved at the hospital to find out that he had not had a heart attack but was shocked by the discovery that he not only had Pneumonia but a mass in his right lung. Needless to say, he was admitted. They also discovered a rampant Thyroid condition and he was severely anemic. 2 days later they made a decision to do Thoracentesis. See http://en.wikipedia.org/wiki/Thoracentesis for a detailed description. Unfortunately, the test was inconclusive.
On the 15th, I arrived early because Dad was being discharged. I walked into a nightmare beyond belief. Overnight, he had gotten so bad he couldn’t sit up or roll over by himself. He could barely feed himself. He didn’t recognize me or anyone else. When the doctor arrived a couple of hours later it was immediately decided he would have to go to a rehab facility because I wouldn’t be able to manage him by myself at home in his condition. He was transported via ambulance across the parking lot to the rehab facility. We spent 17 days there with another trip to the ER via ambulance in the early morning hours of June 22nd (to be told once again, that he had Pneumonia), he was sent back to rehab after about 6 hours in the ER.
Every day that he was in rehab, I spent part of the morning and part of the evening with him (and often, part of the afternoon). And every day I saw small signs of improvement. Arrangements were made to bring him home on July 5th. On July 3rd, he was again sent to the hospital via ambulance. He was assigned a new doctor. For once, a doctor stopped everything to listen to me when I insisted they kept diagnosing pneumonia and he kept getting sicker. I asked if there was any way he could test for Congestive Heart Failure. He never batted an eye as I explained why I thought it was a possibility, he simply ordered an Echocardiogram for the following morning.

My relief was staggering when the doctor returned the following day and smiled at me before saying, “Good call, girl. He has CHF.” As soon as they began treating it, we saw visible signs of improvement. He was released to come home on July 7th!
On the morning of the 8th, I was startled to realize Dad has NO memory of his time in either the hospital or rehab. Alzheimer’s has become a protection device for him at times. Life has drastically changed for us yet again.
We have home health involved to try to help speed Dad’s recovery. Physical Therapy 4-5 days a week, Occupational Therapy 2-3 days a week, Speech Therapy 3-5 days a week and an RN who comes in 2-3 days a week. I am thankful for the extra help, as they give him a reason to get up and get moving. He is eager to please and is making steady progress because of it.
There have been many events over the last month that I will share as time goes on. But for now, this is where we stand. Tomorrow will be an important day. We go to see the Oncologist to get the results of the PET Scan and Lab work that have been done over the last couple of weeks. Tomorrow we find out if Dad has lung cancer. Tonight, I simply pray for peace beyond understanding…