Ups and downs

My father's health has been getting better, for the most part, these past few weeks. He was becoming more like himself, until this evening. Since he's been in the hospital, I've visited almost every evening for dinner. If I haven't been able to make it, one of my kids has. Last night, I didn't go and couldn't get one of the kids to go.

When I went to see him this evening, he was quiet. Not quite himself. He started eating and I helped, as always, we were talking but he kept asking if we were home yet. Or, can we go home now.

March 21, 2009

My father had his surgery February 17th. His leg, above the knee, was amputated. The week to ten days following the surgery was very difficult. He was on morphine and quite loopy. It wasn't my father in that bed and it was quite disconcerting for me. I asked the hospital staff to change his pain medication to something less strong as my father has not been someone who used a lot of pain medication before. He came around to himself and is on the mend. From the hospital, they have moved him to a rehabilitation hospital where he is getting some support for building up his body to allow him to manage himself. It's not going too fast as he's been resisting. My hubby came with me to visit one day and expressed how important the physiotherapy was to my father's healing. He bought into that and the next day was participating in the physio class.

The problem I am having, as I was having at the other hospital too, is communication. While at the first hospital the nursing staff, doctors, and social workers would be asking my father to make decisions, or give opinion, etc. Well, he didn't know what they were talking about and he would give simple 'yes', 'no' answeres. When I told them it was important I be involved as he was BLIND and HARD OF HEARING - it was as if I dropped a rock on their heads. I had made sure that information was everywhere....I made sure my numbers were EVERYWHERE. Yet, in the end, no one had any idea. DON'T YOU PEOPLE READ THE PATIENT'S CHART???? Anyway, same thing here. I have let them know I am not appreciative of the lack of communication.

Things are getting better. Spring is here. It's been sunny this past week. And my dad seems to be doing better. Time heals....and I need to have the patience to let that time pass.

Don't understand what this all means...

I had a very interesting day today. It's been a rough week, in terms of caring for my father and get a handle on long-term care facilities and trying to navigate that maze.

Today, my mission was to get in touch with one of the long-term care facilities that would be cultural familiar for my father. After a week of being stone-walled, I thought I would start my day by trying to get through one more time. I phoned first thing in the morning. The young man was very friendly and kind, as I explained the difficulty I was having reaching the administrator in order to arrange a tour. He was understanding and apologetic and asked me my name, promising he would pass on the info to the administrator personally. I gave him my first name and started spelling my last...when he interrupted me and said "Miss, don't you recognize my voice. It's George!" And I did!! George was a former student of mine. I thought it sounded like him (he had a very distinct voice) but thought "what are the odds!" He assured me the home was a good one, but that reaching the administration was sometimes difficult. He said he'd pass on my info and get the administrator to call me. Which she did, 10 minutes later.

After an unproductive conversation with this 'administrator', I had planned on seeing my father to sign the application to enter a long-term care facility...but before I did that, I decided to go to a yoga class to try to relax. It's been a terribly stressful time, and I have not been exercising at all - and my stress is coming up in angry outbursts.

As I walk in to the gym, one of the young guys that work sales there, steps in front of me and says "Miss, I don't know if you remember me. My name is David S..." And I did!!! Wow! Two former students in one morning! He told me was he was up to and how he was doing. He seemed happy to see me and happy to share his success. What a high! I was so happy for him AND happy that he spoke to me!

So, up to the yoga class I go, and in walks a young woman who looks very familiar, but I couldn't place her. The instructor came in soon after and class was an intense 75 minutes of yoga. After the class, the young woman walks over to me and I recognized her (couldn't remember her name) and she said "Miss P, do you remember me?" Once again, I did!!! She told me her name and what she was up to and that she had just inquired at my old school for my info. She was going to contact me for a reference, how timely was today's meeting. I assured her she could use me as a reference and off we went.

When I got to the bank, to pay some bills for my father, I saw another former student...only we were both in seperate lines and didn't get a chance to talk.

I can't understand why all this happened, all in one day...all students I had worried about...all students who had a number of challenges in high school when I knew them...and all happy to share their success with me. It made my day....all I could think about was how fortunate I have been in my life to have taught wonderful young people. I wish they could know how much I've actually cared about their well-being and how I've prayed they found success.

After all this, I went to my dad's and had him sign the papers. He understands he may not be returning to his home after his surgery, but I tried to be hopeful telling him that if he got better, he might be able to come home. I have to hold that hope for him...and for myself. He was very tearful. I try to be strong for him and hide my grief so I cry in the car a lot when I'm driving from his home. I'm thankful for a lot in my life but I'm in so much pain right now, that I can't appreciate them.

Refusing treatment

I woke up this morning prepared to take my father to TGH for his hyperbaric treatment. When I called him to tell him I was on my way he said he wasn't going. He said he was thinking about it all night and does not want to continue the treatment. It was too hard for him to go everymorning. I suggested getting a later appointment and he answered flat out "NO. I don't want to." I told him the consequences of not recieving this therapy and he said he didn't care. I wish I could say I'm surprised, but I'm not. He seemed apprehensive on Friday, repeatedly asking me if he had to do this for 5 weeks. The fact that the weather is absolutely horrific, even for Canada, isn't helping much. It's so difficult to get around.

After I spoke with him, I phoned Dr. D at TEGH and have made an appointment with Dr. O, my father's family doctor - in order to sign the application papers for long-term care. Thursday we see Dr. D and then plan next steps. I feel numb, not sure our future. Not sure of too much right now.

This past week...

everything moved very rapidly from Monday to Friday. I had planned on taking next week of for a couple of reasons - one to complete the Cognitive Coaching Workshop (which is two days) and secondly to accompany my father to his doctor's appointment without worrying about rushing back to work. As it turns out, that is not exactly what I will be doing.

This past Tuesday, when I checked my voicemail at work (didn't get one minute on Monday to check messages), there was a message from the doctor at the Hyperbaric Medicine unit at TGH. He said he had an open slot for my father and wanted to start right away. I didn't return the call, as I was paralyzed with the thought of figuring out what to do. I called Dr. D at TEGH, and left him a message questioning whether we were going to proceed with hyperbaric treatment or not. Dr. D called Wednesday, indicating that the results of December's test were positive and that he recommended we schedule the appointment and start therapy. Wednesday, when I got in touch with Dr. E at TGH, he asked we come in the next day. I told him that it would not work for me as I had a number of work commitments, plus that I want him and Dr. D to actually TALK to one another before I would agree to take my father to any therapy. They spoke and later that day, we had scheduled my father for his first treatment on Friday morning. On Thursday, when we were confirming the appointment Dr. E suggested an addition consult with Dr. C at St.M's Hospital (this is the vascular surgeon) to look at the feasibility of vascular bypass. The appointment was scheduled for Friday after the treatment.

Friday at 7:00, I picked up my father and off we went to TGH. When we arrived, we were directed to change into the clothing they provide that is "tank safe" and my father entered the hyperbaric chamber for about 2 hours. After that, we cabbed over to St. Mike's and met with Dr. C (who has to be one of the biggest "downers" I have ever met). Dr. C is well respected (so I'm told) in his field, but bed-side manner is greatly lacking. He went on to say, basically, that he didn't think the hyperbaric treatment would help my father and that all doctor's have biases toward their area of speciality. Well, I guess you have to be a door knob not to know they have biases...DA! I expressed to him that I knew this fact but that, unfortunately, these doctor's were all I had in terms of opinion with which I could make a decision. As it stands, I am the sole decision matter, as my father as left it to me. Without siblings, the best I get from those around me who care about me is "it's really up to you Lillian...I don't know what to say." And what can people say, it's such an awful decision - to amputate and face an unknown future or to not amputate and die. This is what I have to decide for my father.

So, for now we are continuing with hyperbaric, but all that might change again on Monday, I don't know. My father said he got a call from TEGH, from Dr. D's colleague, saying my father should come in and get his intravenous pack removed. My father has had a portable intravenous antibiotics pack since August, and my understanding was it was staying until the hyperbaric treatment was over or until the amputation. Since the hyperbaric treatment has just begun and the amputation has not been planned...I don't know why he would call and say that!? We'll have to see on Monday. I'm hoping my father mis-heard him but don't know. I'm hoping and praying for the best but preparing for the worst.