Things have been busy for me and for dad, so I have neglected to update you all here. Basically after dad’s urology appointment, I waited several days without hearing the results of his urine culture. I finally called his office and waited awhile for a call back. Several calls back and forth and someone finally told me it was negative. I asked then why it looked so dark and the original test indicated there was blood in it? The PA was going to have his doctor call me back. I waited more with no call back.
Then I called his assisted living to ask when his last blood labs had been done. They told me his geriatric physician’s office had just called them to do a blood draw the following morning. Oh. There must have been communication between the urologist and the geriatric office. I decided to wait for the results of that blood test, which was to be on a Friday morning.
The following Monday I called the ALF to learn if his blood tests had come back. The nurse sent them to me by email. They didn’t look good. He looked extremely anemic. I also wondered about the kidney function tests. I called his geriatric physician’s office and set up a meeting with that physician which was to take place the following Friday when she visited his ALF.
In the meantime, the next day his urologist called me and asked me to set up another appointment for him to examine dad with a scope. He was going to be gone for a week in between, so the appointment is for next week. I wondered if that were the right exam as I was confused by the kidney function tests.
On Friday I went to meet the doctor very early so I wouldn’t miss her. In the past she had come and gone before I ever got there, so I arrived 30 minutes earlier – just after 8 AM. She had arrived 30 minutes before me, but was writing notes.
Apparently dad had gotten up that morning with a lot of blood in his Depends, which they just told me and the doctor when I arrived. They brought us all into a small room – dad, me, the doctor and the ALF nurse. Dad was confused and freezing. I didn’t realize they had put dad in front of an open window and that was one reason he was so cold. Also he is usually cold when other people are comfortable.
I put my sweatshirt on dad and tried to explain why we were there, but he didn’t understand. He just sat there asking why he was so cold. I asked the doctor about the tests and what to expect next. She said the poor kidney functions were not unusual for a man dad’s age and were not of concern now. She was worried that his anemia was so much worse than it had been in the past.
She said if he lost much more blood she wanted me to take him to the ER to be admitted to the hospital for a transfusion. I said I had been trying for a long time to keep him out of the ER and the hospital. But she said that is the only way since they need to run lab tests there and then do the transfusion and maybe the scoping at the same time.
She ordered another set of blood labs to be done in a week – this past Friday. The results of those tests should be ready tomorrow. In the meantime, she said if the aides find he has a lot of blood in the toilet, they are to call me and I should take him right in to the ER.
I asked what she thought the bleeding was from, if not the kidneys. She said it was probably the bladder and maybe a growth or tumor in the bladder. So there went my hope of canceling the scoping!
I went to the store and bought dad a six-pack of individual orange juice containers and some of his favorite snacks and brought them back to him.
I woke up early every morning since that day, wondering if I was going to get a phone call to come take dad to the hospital. Fortunately so far nothing has happened. I visited him a few times and he looked better than he had last Friday. Except today. Today when I visited him he was in the lounge sitting in front of the television. But he was dizzy and cold and looked thin. His face had no color in it.
Today I was not able to have much of a conversation with dad. He seemed to be having more trouble than usual just hearing me, and everything I said to him had to be repeated several times. Finally I just sat near him and we watched television. He said he was cold and I asked if he wanted me to bring him a warmer shirt. He said no. Did he want to go to his room and sit with the blanket on his legs? No again. We waited until lunch.
I asked in the wellness center about his weight as they weigh him the first of each month. For April it was the same as in the past. For May, he had lost 2 ½ pounds. It has fluctuated some in the past two years, but this was the lowest since 2 years ago. He had lost a lot of weight when he was hospitalized 2 ½ years ago. They won’t weigh him mid-month except if the doctor orders it.
Tomorrow I will call and ask for the results of Friday’s labs. If they are bad I might get a call from his geriatric physician’s office. Otherwise I will see what happens mid-week when we see the urologist for the scoping.
I have this on my mind 24 hours a day lately. I was called out of meetings 2 or 3 times in one day from doctor’s trying to reach me. Once it was a wrong number and I was really frustrated because I usually don’t answer unknown numbers. However, doctors often use private numbers so I answer everything when waiting for a doctor to call.
I was at a presentation last week about palliative care. I asked the presenter afterwards how I might get dad into a palliative care program if he isn’t hospitalized. Is it possible? He said yes, to call the program in the hospital dad would be working with.
I called the palliative care doctor dad had seen before, but was told he had moved and was not there anymore. Neither was his former colleague. All new people are there now and besides, that was the inpatient program. By this time it was late on Friday. I called the outpatient program and spoke with a nice woman (less of a “gatekeeper”) and she looked up dad on the computer and could see he had been seen by palliative care there before (as an inpatient). She said the outpatient palliative care physician would call me back. It was late and he never called back. Perhaps I will hear from him tomorrow also.
Honestly, I am so afraid things will start moving really fast once dad gets o the ER or in for the scoping. If they find a cancer I am afraid they will want to start doing things – surgery or procedures – that I might want to refuse. I need someone to help me make decisions – in the moment! I hope I can get a palliative doctor at my fingertips so I can immediately ask for guidance.
I know I worry in advance for things that may never happen. But dad has been losing blood for a month or more now and is dizzy most of the time. Something is wrong. His doctor increased his iron medication, but that is just a stop-gap measure.
So, my friends pray for us now. I need help making decisions and dad needs help with his dizziness and his unknown problem. I hope I don’t get too busy to update you all on what is happening. But if I don’t write for awhile, you will know something is keeping me occupied.