You might be familiar with Edvard Munch's painting, The Scream. He shows a figure with an agonized expression against a landscape of a frenzied, orange sky. I didn't think much of this piece until last week.
Laura had to take Corinne to Western Washington University, which is about 5 hours away. (Is it just me, or was this summer short?) Since they were practically in Canada, Laura took Jordan and Corinne on a mini-vacation. The only problem was finding 24-hour coverage for me. Fortunately, hospice has a provision for respite care, The Ray Hickey House, which can care for twenty people at one time. I have been a guest at this facility before with mixed results.
In all fairness to the caregivers there, I pose a challenge because my needs are ever-changing. However, this time, Rose, my caregiver from home, assisted me at the hospice house, which turned out to be fabulous! She took care of me in the morning which is the most difficult part of my routine.
With Rose caring for me, I thought I was in for a smooth stay this time until, around 4pm, I heard a shout. A few seconds later, I heard a scream. When I say a scream, I’m talking about a blood-curdling shriek. What was happening? We called the resident nurse who informed us that they were taking care of a person in the final stage of life. She explained that sometimes people at the edge tend to have a mental breakdown, especially if they had any form of dementia.
The screams would come in waves. There would be quiet, then without warning agonizing screams. I felt like I was going insane. The screaming went on night after night. I needed sleep but all I could see was the image of The Scream in my mind - horrific! I received 1ml of Lorazepam. The theory is that this drug should de-frazzle my nerves but it didn't work. One caregiver held my hand in hopes my mind would settle down enough to allow me to sleep.
Laura had to take Corinne to Western Washington University, which is about 5 hours away. (Is it just me, or was this summer short?) Since they were practically in Canada, Laura took Jordan and Corinne on a mini-vacation. The only problem was finding 24-hour coverage for me. Fortunately, hospice has a provision for respite care, The Ray Hickey House, which can care for twenty people at one time. I have been a guest at this facility before with mixed results.
In all fairness to the caregivers there, I pose a challenge because my needs are ever-changing. However, this time, Rose, my caregiver from home, assisted me at the hospice house, which turned out to be fabulous! She took care of me in the morning which is the most difficult part of my routine.
With Rose caring for me, I thought I was in for a smooth stay this time until, around 4pm, I heard a shout. A few seconds later, I heard a scream. When I say a scream, I’m talking about a blood-curdling shriek. What was happening? We called the resident nurse who informed us that they were taking care of a person in the final stage of life. She explained that sometimes people at the edge tend to have a mental breakdown, especially if they had any form of dementia.
The screams would come in waves. There would be quiet, then without warning agonizing screams. I felt like I was going insane. The screaming went on night after night. I needed sleep but all I could see was the image of The Scream in my mind - horrific! I received 1ml of Lorazepam. The theory is that this drug should de-frazzle my nerves but it didn't work. One caregiver held my hand in hopes my mind would settle down enough to allow me to sleep.
I did my best to block out the demons in my mind who were whispering, “This will soon be you!” While quieting those dark thoughts, another thought crossed my mind, “This is not you now!” I have an excellent opportunity to be thankful for where I am right now! That is right, I found my reason to be grateful at this moment. Can you believe it? I was genuinely thankful for my ALS-ridden body. I have a mind. I can show love and feel love. I can bring a smile to people who are in desperate need for some sort of human contact.
To that end, I decided to paint my head, mohawk and beard - half Seahawks' green and the other half blue! I wore my #24 Lynch jersey (I know he is no longer with the Seahawks); but this jersey has a story. December 2014, I got pneumonia. Due to a compromised respiratory system, I was constantly coughing with no means to clear my lungs. The doctors said it was time to call the family because the end was near. Everyone flew in to say goodbye. I prayed and was ready to go when God said, “Hang in there and let me show them that I am God!” When I got home I wore the #24 jersey and my family reminded me that my survival entitled me to claim "I’m in Beast Mode” ! NEVER QUIT!
Since that dramatic December, there have been times when i have felt like quitting. Hearing those screams awakened in me the desire to appreciate where I am right now! They reminded me that things could be worse! I want you to appreciate where you are right now. Go, do something that makes you smile and be a blessing to someone else!
To that end, I decided to paint my head, mohawk and beard - half Seahawks' green and the other half blue! I wore my #24 Lynch jersey (I know he is no longer with the Seahawks); but this jersey has a story. December 2014, I got pneumonia. Due to a compromised respiratory system, I was constantly coughing with no means to clear my lungs. The doctors said it was time to call the family because the end was near. Everyone flew in to say goodbye. I prayed and was ready to go when God said, “Hang in there and let me show them that I am God!” When I got home I wore the #24 jersey and my family reminded me that my survival entitled me to claim "I’m in Beast Mode” ! NEVER QUIT!
Since that dramatic December, there have been times when i have felt like quitting. Hearing those screams awakened in me the desire to appreciate where I am right now! They reminded me that things could be worse! I want you to appreciate where you are right now. Go, do something that makes you smile and be a blessing to someone else!
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