I thought you all might like an update. I'm on family medical leave from work now so am at home with Paul all the time. All of a sudden last week the time just seemed right to do it, and I'm really glad I did. I think he's declining very fast. It seems like almost every day there's something that he was able to do before and is no longer able to.
On Monday, I called Dr. Will's office (Paul's primary physician out here) to find out what I needed to do to learn about home health care or hospice, figuring that we may need something like that before too long. The nurse said she would find out what's available and get back to me. Later that day she called me back, saying that someone from Hospice would come and see me to explain all about their program.
On Tuesday, a woman from a local Hospice program came and talked to Paul & me about their program, and I ended up signing all the paperwork to get started now. It's a wonderful program. There's a nurse who will come 3 times a week to check on Paul, answer any questions we may have, etc. There's a doctor who's available, although Dr. Will is still Paul's primary physician. There's a social worker who will provide moral support for us and also for Philip & Karen. There are aides who will come and assist with bathing, etc., if we need it. There are volunteers who will come if I want to get out to a support group meeting, etc.
They will provide all kinds of equipment. We've already gotten a wheel chair and a portable commode. If Paul needs a hospital bed down the road, they'll provide that. They'll provide all of Paul's medicine which is tumor related, and will even deliver it. It's all covered by our HMO insurance, except for crisis care, which is more intensive care if Paul should get pneumonia or something like that. However, now that Paul is on Social Security Disability, we qualify for Medicare, and they'll cover the crisis care.
I wasn't thinking that we needed all of this yet, but the woman who talked to us said it's a good idea to get things started before you really need it. That way you're familiar with them and they're familiar with you, so it won't be so hard when you really do need it. I think she's right, and am glad I called when I did. I was really pleased that we could get the wheelchair now. Paul has been using a wheelchair when we go someplace that has one, and I had decided it was time to go buy or rent one to use when we go places that don't have one.
Today we went to The University of Chicago to see Dr. Roach, Paul's primary physician there. He said Paul's blood sugar was very high (365) when he had his lab work done last Wednesday, so he checked it again today and it's still high (292). He wants Paul to go back on the Glyburide, which Dr. Will had prescribed for him earlier but we had stopped because we thought it might be influencing Paul's platelets. He said I should have the Hospice nurse check his blood sugar each time she comes and I'm supposed to report to him, so he can increase the dose if needed.
Dr. Roach had talked to Dr. Nicholas before he saw us today, and Dr. Nicholas was concerned about the low platelets last week (73,000). Dr. Nicholas thinks it must be a bone marrow problem since there's nothing else to explain it. He is also looking into getting thalidomide on a compassionate use basis for Paul.
We also saw Kathleen Fuchs, our therapist at U of C. I don't know if I've told you about her. We were referred to her after Paul's neuro-psych exam, for help in communication and the ordinary stresses relating to having something like this. She's a great person - also she's young, pretty, and a bicycle rider! I learned some new words from her today. Paul is having problems now with Apraxia and Perseveration.
Apraxia is difficulty initiating an action. I have noticed quite often lately that I'll ask Paul if he wants to do something, like move to the comfortable chair, and he'll say yes, but won't do anything about moving. If I give his arm a little tug, then he'll get up and move to the chair. This morning when we were eating breakfast, he just sat there and looked at his cereal, but when I picked up his spoon and gave it to him, saying "Here's your spoon", he was fine.
Perseveration is difficulty stopping an action. Last Sunday when we went to church, for example, we sat in the congregation because the choir wasn't singing. It was a real small crowd because of the weather, so I suggested we go up pretty close to the front. However, when we got to the front row, Paul kept on going up toward the alter until I said "Let's sit here" and led him back to the first row.
While we were at U of C today, Paul also had a swallow exam. I had noticed that he was choking some and was concerned about food or liquid getting into his lungs and causing pneumonia, so I asked Dr. Nicholas about it and he ordered a swallow exam. It was done in radiology, and of course most of those people know Paul, so he got real nice treatment. They even let me watch. Everything was fine, so the choking was just probably an occasional fluke.
Continue to: Jan. 10, 1999
Return to: Diary of a Brain Tumor Patient's Wife
Created and maintained by Renette Davis. Send comments to Renette by clicking here.
Created: June 7, 1999
Last updated: July 20, 2010