I learned today that when I allow the actions or inactions of others get my blood boiling, I am in a bad place and need to find my way out. I am not seeking validation for my behavior today. I only want to share so others can learn from my misconceptions and mistakes.
We were glad to get a call back from the palliative care doctor and relieved he had an opening today since it is Amos’s day off and he was out of pain meds.
My expectation was that we would arrive at the cancer center and see the palliative care doctor who would set up home care for pain management including an initial pain assessment. I needed to be back 4 hours later to get my girls to a birthday party, but expected it could not possibly take longer than that.
The appointment began with a survey about Amos’s death arrangements including a living will and power of attorneys for health decisions etc. I asked Amos if he felt like we were totally giving up. We started to regret our decision to be there.
The wait was longer than expected, but that is a common occurrence for us and doesn’t bother me too much anymore. If we’ve learned anything through this pas year, it has definitely been patience.
The pain assessment with Dr. Dumlao was actually very good. He thoroughly explained Amos’s options, asked a ton of questions, and eased our worries about Amos becoming addicted to pain meds. He asked if we knew the difference between addicts and cancer patients. He then said that addicts don’t have pain.
He said that only 1% of cancer patients become addicted to pain meds and assured Amos that he wouldn’t. He also said that the pain of cancer can be the worst pain known to human bodies – even worse than torture and without the pain meds, he would not be able to finish his treatments. Along with making me cry out of empathy for Amos, he was successful at helping us both feel ok about the Fentanyl patch.
He asked about other things besides pain including depression. I was surprised when Amos told him that he had fallen into a depression over the past few weeks because he has been worried that he wouldn’t be able to continue working. As a professional in the field of psychology, Amos doesn’t use the word “depression” lightly. It was a self diagnosis that shocked me.
The next part was confusing because the doctor began to set up appointments for us to come back to the cancer center so they can up his dose each week. I explained that we wanted home/palliative care because we live so far away. He said we might live too far for that and continued to set up times for us to return. I had to stop him again to explain our situation. I was completely confused because I thought palliative meant home care, but it doesn’t. It means –“Specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”
This is a wonderful and noble objective and I completely misunderstood, but I was in a more practical mindset as my husband’s agonizing pain was returning from the length of the appointment and lack of pain meds.
We were then left waiting again as Amos started to go into a dark place. When the nurse finally returned, she didn’t mention the home care but started explaining all the handouts she had printed out for us about the meds, etc. I asked her kindly about the home care and she said “Oh, do you want me to look into that?” I told her to please find out right away if we can get that set up. She told me she could call them to see if they serve our area but by the time she actually did, they had closed for the day.
She continued to talk to Amos as I grabbed the scripts and ran down to the pharmacy to get them filled before they closed.
Of course, we had to wait there too and I found myself loosing it as Amos stumbled down the hall to me grabbing his stomach and whimpering. I found myself starring down and judging every action and inaction of the pharmacist as the ETA she gave me had come and gone. By the time she came to the pick up counter with his meds and is laughing at her attempts to staple the bag closed with a stapler that is out of staples, I was done. I grabbed the meds and rushed Amos to the drinking fountain to take a pill then to the car to apply the patch.
I’m not sure what she must think of me but I felt really bad about my behavior. I then realized that Amos was trying to make up for my rudeness while dealing with his own problems and I felt even worse. Not my best day folks.
His meds started working half way home and everything is calm now so I can reflect.
I remember the advice of Elder Busche,
* Avoid rush and haste and uncontrolled words.
* Avoid at all cost any pessimistic, negative, or criticizing thoughts. If you cannot cut them out, they will do you harm.
This day did reinforce our dedication to getting home care for Amos so I hope to find out tomorrow that it will work out. We can’t do days like this anymore.