Wednesday, July 26, 2006

Two Doctors in Toronto: The Final Diagnosis

Dad had an MRI in Toronto. The only way to get him there was to hire an ambulance. I had to be in Ottawa and we hired a companion to accompany him on the long (1 1/2 hour drive) to Toronto. Both retirement homes and LTC homes use ambulances to deliver residents/patients to important appointments. Dad was unable to sit up in a car and I could not manage him.

A meeting follows up dad’s MRI with his Toronto oncologist. Dad had a 2:30 p.m. appointment with her & a 3:00 p.m. appointment with another doctor. I don’t know whom the second physician might be, but make arrangements to take Dad into the city. I had met the first doctor previously in Toronto with Dad. Dad is ready a couple of hours before our estimated departure time. He loathed being late. I made it to the residence about a half hour before they are due. The problem with conveying patients like Dad to such appointments, aside from the distance, is booking an ambulance to get him there. I cannot manage him alone. He cannot walk and I cannot help him. The ambulance is delayed an hour and a half due to an emergency in another town. Dad is quite upset with the delay.

Eventually they made it. I sat up front with one attendant - who drove. The other stayed in the back with Dad. Dad needs to urinate every 10 to fifteen minutes or so. This became a problem fairly quickly as Dad is unable to pee in the bottle when horizontal. The kind young man, I called him Steve 2, since the driver is also named Steve (number one!). I can hear Dad and Steve 2 talking as we drove. It is a relief to sit back and relax and chat with Steve 1 while we made our way to Toronto on the highway.

We arrived at the hospital for our appointments and checked in. They take us into a back hallway, where the doctor’s offices are located. We waited, likely a half-hour, after I sent Steve 1 and Steve 2 for a coffee. As we waited I try to chat with Dad. I can hear another man in the hallway complaining that he had driven in from out of town for this appointment and had been waiting three hours. I feel somewhat guilty, since we got in quite quickly to see the doctor, who is now behind in her appointments by a long shot. We are paying for the ambulance by the hour and I kept my mouth shut. Wait times for appointments are one thing, but waiting times, when you are scheduled for a particular time, is another issue.

In retrospect, I wonder why on earth we had to drive 250 km, taking up the time and energy of two paramedics and an ambulance to tell Dad that these doctors can do nothing more for him. It is a distressing meeting. The radiation does not work, the tumour is back, and, therefore, chemo will not do anything for him either. It is Mom who decided that they would go ahead with the radiation in the first place. I truly question it now. If only I had read the statistics and asked a few more questions. If only I had been able to talk to their doctors all along this medical journey.

Dad’s oncologist is going on maternity leave shortly, she meets with us, and then introduced the second doctor, who is taking over her practice while she is on leave. Now things become clear. Yet, we never saw this doctor again. Dad’s oncology treatment is over and it is going to be a matter of time before he passes. I truly do not understand why we had to meet both doctors. I question, too, why there is no follow-up with my father. I wonder why they don’t tell us about the statistics. Is there anything to learn from all this? For example, what is the impact of the radiation? Is there justification for giving an 81-year-old radiation? What is the prognosis? The odds of success are not high, I find out later. Tumours tend to come back in the elderly. Treatment does not have much chance of success.

Both doctors’ ‘bedside manner’ is most empathetic. They are visibly dismayed by having to deliver this kind of news. Dad, once the doctor yelled loudly enough, managed to let Dad know that they can do nothing further. He seemed to understand this, later conversations tell me so. The doctor tells us that Dad has two tumours in his brain right now, according to the MRI done last week. One is inactive, but the other is growing. I know this all along. Dad’s difficulties with language had begun back in the spring. They are similar to his original problems when they first removed the tumour. He was totally aphasic at that time. It is a clue, his difficulties with communication, that there is something brewing. We should look to ensure that he is as comfortable as possible.

The doctor tells me that tumours that do not respond to radiation do not respond to chemotherapy. In younger people they can give it a shot, but in older people there is a toxicity that does them in. We have to manage his health care needs and determine treatment as we encounter each barrier. They said there will be pressure and headaches, as well as increased irritability. I wish I can go back and ask some my questions.

I asked for a time frame and the doctor tell me that when he starts to sleep half of the time he likely had a month leave. After Dad’s surgery in 2003 he would get up to put on the wood stove around 5:00 a.m., then go back to bed for a nap. As often as not he would sleep until 4:00 p.m. worrying Mom endlessly. She complained about this a lot. I am not sure how we will figure this out.

The paramedics came back and they are very considerate. Both Steve 1 and 2 asked the prognosis, and I tell them about the sad but expected news. I begin to feel awfully emotional. I am able to focus on getting Dad back to his residence. Steve 2 is a hoot in the ambulance. He and I talked of lots of different things. I will say he rather babbled. They, too, are most supportive and in giving me their condolences. It is a long drive back north through thunder and rain. By the time we made it back to Gravenhurst there is a huge downpour. I got soaked just going up the 25 steps from the ambulance to the front door. Dad apologized for getting the ambulance wet, as he had lost control of his bladder. They assured him that it happened all the time.

In hindsight – my brother and I had made a mistake. We know in May that Dad is getting worse. We chose a retirement home without any Long Term Care capabilities. It is a great place. However, knowing that he is quite ill, we should have realized that since he is going to get worse it will been easier to move him once and then we will been able to move him from the retirement wing of a Long Term Care Home to the nursing section. It would have been less traumatic since the rooms look similar.

Monday, July 24, 2006

Ears and other bodily functions

Another visit in to see a sleepy Dad. He just does not want to do anything. We respect this. I find his glasses for him and helped him get dressed. By now staff are letting him sleep in until after everyone else had eaten. They bring him a muffin and coffee and juice on a tray. They do not have the staff for such personal care but they kept it up for a time.

Dad calls his room his ‘home’. He will tell me that he wanted to go home if he is in the hall. His stomach is giving him problems, too. He tells me he is, “Grindey in his stomach”. He made it to supper alone some days, and after a meal he feel better. The doctor had been in to see him. Dad wouldn’t speak to the doctor since he hadn’t seen him since Mom had died in May. Dad’s GP is ill himself but no amount of talking can convince dad of that. He is merciless. Dad has infections in both of his ears, his prostate and a urine infection. No wonder he had to urinate constantly. He wanted the pee bottle, rather than going the four feet from his bed to his bathroom. I cannot understand how he can get this ill. I guess the infection he had had last month had not been cleared up.

We ended up putting oil in his ears weekly and washing them out with a syringe and bulb. He is on more meds than I can keep track of. I am so glad I do not have to worry about it. He and Mom are always careful about taking meds at night at exactly 8:00 o’clock. This is still an issue, but not for long.

Monday, July 17, 2006

Visiting Dad's Lawyer

Dad’s lawyer has to evaluate Dad to see whether he is competent or not. He will do an assessment of Dad’s capacity.

I am going to take control of Dad’s financial matters, since Dad cannot even write a check. We have power of attorney for this. Dad was violently opposed to this in June. He thought he could still keep track of things. We have to check out and renew insurance: life, car, home. As boarders living in Dad’s house Brian and I have tenant insurance.