After talking with Satomi about hospice, I was concerned and torn. The decision seemed too easy for her. Had she really been thinking about it for days? Was she just depressed and wanting to give up? Did she think she was just being an undue burden? Was she in an alternate reality and thought it was a dream? Seriously, I had to be sure.
Most importantly, I had to be sure that she was in her right mind. What if she forgot that she wanted hospice care? Then that decision was obliously flawed. I had to talk with her again about it to be sure. It’s too important a point for me to be awkward about it. I needed clarity. In the morning I will talk with Satomi again.
After breakfast, I told her more information about the palliative care trouble we had the night before and used that as a segway into it, “…are you sure you want to go on hospice care?” The answer was the same and we discussed it in more depth. It was a conherent and thoughtful exchange but still definitely not pleasant.
With that, I am confident that she understood the merits and was in her right mind. Unfortunately I am still not convinced of her motivation. I needed more help to be sure.
The process of getting Satomi relief from her headache was very telling. It was not necessary for her to experience that sort of pain for all that time. The on-call Oncologist agreed with me. He explained that the Palliative Care is simply an extended form of home care. They must get Doctors support and approval prior to doing anything or using any equipment. Palliative care is inherently limited because it is not intended for serious degenerative illness. The most support palliative care could provide is some return phone calls and possibly a prescription for stronger medication.
Hospice care, on the other hand, could send a medical professional to our home at any time to address the issues directly. There are meds left at the home at all times for pain, seizure, etc. Upon admission to hospice care, the caregivers are trained to use them. Their resources are designed to keep the patient pain-free. After hearing her history, medications and situation, he strongly recommended hospice care.
Satomi was very familiar with the hospice process. She managed her fathers healthcare and coordinated all of his hospice services. In the situation I thought it important that I speak to Satomi and hear her wishes. It was a very sensitive subject but her knowledge definitely made it easier.
She thought that hospice care made a lot of sense for her. She said she had been thinking about it for some time already. After what I’ve seen Satomi endure this week, I can definitely see the advantages.
I’m so sorry I didn’t post last night. It was very hectic for us. I didn’t get all the “vital” things done until 3:00am and then I fell asleep. I had to push the “important” things until today. This and the other posts today are some of those “important” things.
I am happy to report that Satomi didn’t have a seizure today. Given our week, that is something to be happy about. She did however, have a pounding headache which set the tone for my evening. It was so bad that I could see the veins throbbing in her scalp.
Satomi can’t just take a couple of Aspirin and take a nap. I had to speak to the on-call Palliative care RN and the on-call Oncologist for guidance. It was a stressful couple of hours.
After tracking him down, the RN was reluctant to make a recommendation. My first thought was to increase Decadron but the RN advised that it would likely have little effect. Satomi is already at the maximum dose of most of her medications. While there is no obvious interferences, changing them without some unforseen side effect occuring can be difficult.
The on-call Oncologist was our Oncologist’s partner. We’ve spoken to him before in similar situations. He is also very good but he’s not up to speed to Satomi’s condition. I reviewed it all so it took many minutes-I talked pretty fast. He made some very key observations and recommended that we change from Darvocet to Vicodin, a notably stronger pain killer. I asked about simply increasing her Darvocet dose as Vicodin effects Satomi’s stomach. He agreed but advised that if the pain does not subside in a couple of hours, Vicodin should be taken.
I gave her another 200mg of Darvocet and she took a nap. A couple hours later, her headache was gone and she slept normally through the night.
Ok – my friend Charro is here and as well as e-mails from several of u, I have decided to continue blogging as long as i can to keep my brain active but one day I will just stop! I want to see u all sometime soon to personally thank u for all ur support this past month -i know things have deteriorated for me so quickly but as I look forward each day to see u, I feel like that’s one more day to look forward to! Hopefully, Sandra will be visiting from NJ next week and we can have a PT school reunion of sorts maybe potluck here at my house! Sean will have to coordinate! Also, maybe a Tustin reunion?! Irene will b coming by this afternoon! Can’t wait 2 see u all! Call or e-mail Sean if u want to stop by!
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Sorry – this will actually be my last post! I am so grateful for all of u caring for me and sending me positive prayers and thought I couldn’t sign off the way I did! Sean is out with the girls taking Kandice for her well check at her pediatrician’s office with Jillian – great bonding time with the family! Hopefully she got her flu shot since she had a fever last time! Jillian got the shot but not Kandice! They may go over to Yosh and Cindy’s afterwards to play with Kaden and Rhys since they live close by now! My mom here to help me if I need but just resting in bed, not moving! That is my reality now -wake up, take meds, eat breakfast, more meds – maybe go down for lunch, meds – go up to rest, snack, meds, go to toilet, snack/meds, dinner/meds, all around my med schedule so I don’t crash! Hopefully I will be able to have some quality time with girls and friends or this is just not worth it! I want to spend sometime with u all so please coordinate some time with Sean to come by to visit or this is not worth it! Sean’s cell (714)7497480 or e-mail sean.okamoto@yahoo.com -thanks! Just tell him I insist!
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Satomi's Cancer Blog 