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.

Upcoming surgery

Well, that's it...we're here. My father will have his leg amputated next week. What a trial all this has been. This week, in particular, has been very difficult. It seems every time we have a really bad week, you can't imagine it get worse...and then it does! We booked the surgery as a below-the-knee amputation, then this Wednesday the surgeon called me at work. He asked me if I had any questions, I said no, then after an awkward pause, I told him what I understood the plan to be with respect to the upcoming pre-surgical appointment and then the surgery date and procedure. That's when he said, "ya, about that..." He went on to say he had had a chance to read over my father's file and felt that a below-the-knee amputation might not heal properly due to the vascular condition. That there may not be enough circulation below the knee to heal properly and he felt an above-the-knee would be a better choice to avoid a second surgically procedure. I explained, that the hope of a prosthetic leg was what was keeping my father going and I couldn't guess how he would take this news, but also, that I would relay the new information to my father.

The rest of the day at work was a write-off, I was so upset. I talked with a colleague who recently lost her father and she talked me through how I would approach the topic with my father. Since I was going to be with my father the next day, all day, at the hospital for his pre-op, I would discuss it with him there. I did this, and after a few questions and a lot of thought, my father decided above-the-knee as he did not want to have two operations. He is very scared. He even asked where I would bury him if he didn't wake up. It is so difficult seeing him like this.

By the end of the day, he had resigned himself to the whole thing. The anesthesiologist recommended he be frozen from the waist down and not be put under general anesthetic. This is good, because he is less harmful to his heart. The same doctor recommended my father go to a rehabilitation centre in the west end. Which at first I couldn't get my head around, so today I drove over to see it. It's a long drive, but the site is very beautiful and apparently it's an excellent rehab centre specializing in amputees. Apparently they build the prosthetic on site. So, we'll tell the doctor we would like that placement.

I'm so worried for him. I'm also very hopeful. I think things will go well with the surgery and I think he's got the determination to push through the next few months.

So much pain...

The date is booked and we are all grieving. My father and I met with Dr. W of TEGH - an orthopedic surgeon - who will be doing the surgery. He explained the surgery and the risks. Because of my father's lack of circulation, the below the knee amputation is not looking promising, but it is the surgery they will be doing in order for my father to be fitted with a prosthesis. If it does not heal, they will "revise" the surgery - meaning, they will have a second surgery and cut above the knee. It's funny...(not ha-ha funny) but as I sit here typing it I'm numb. I've have to come to terms with this in the last couple of weeks and am just numb. At work, I have tried to get everything done in case the inevitable occurs. I've done all the work I can for Feb and March.

I hope my dad comes out of this surgery. I pray it goes well and I pray he will adjust well.

Difficult times

Although I try to keep this blog focused on creative endeavours...aside from cooking and baking, the creative endeavours have been limited. My father is quite ill and I have been taking care of him. Running to doctors and various hospitals in order to try and save his leg, which, unfortunately will be amputated in a week. My father has had type 2 diabetes for about 40 years and he's never managed it well. Always a very stubborn man, he would never listen to advice from his only child - me! And, now, here we are. It is because of him, I am determined to try and be as healthy as I can be so my children don't have to go through what I am going through. Caring for an elderly parent is extremely difficult as your attentions are divided between children, spouse, work, home, and (if you can squeeze it in) self.

The one thing I have done to commit myself to pursue painting is to register in a fine arts certificate program at a local college. I think this will make me make the time for myself. I've always taken night school courses in painting that have always been a great opportunity to spend time painting...but this time I want to actually pursue a program of some sort. I think I've found the perfect one and am quite happy and looking forward to starting in the spring.

I haven't been following along with the 12 Secrets...although, every time I check in to check everyone's blogs, events in my life seem to be mirroring whatever the secret of the week has been. Funny, eh?

Right now I'm just living...day to day...I just being and seeing where life will take me. The situation with my father is out of my control, even after trying everything we could. This brings me to question "do we have any control over anything?"

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.

New year...new prayers

Well...it's been a few weeks since I last posted. I couldn't even bring myself to think about the week that just passed. This past Thursday was my father's appointment with Dr. D - his primary specialist. Before Christmas we had met with Dr. E and my father was tested in the hyperbaric tank. The doctor gave me cautiously positive news and said he would forward communication to Dr. D of the results. When we met with Dr. D this week, he admitted he did not have time to go through his mail and had not reviewed the notes from Dr. E. Therefore, could not comment on the course of treatment. He did say, we will likely proceed with a below the knew amputation and that he would be in contact with me once he reads the letter from Dr. E.

My father immediately broke down when he heard this. He tried as best as he could to control his tears, but pulled his hat down past his eyes and started crying. This just broke my heart. He looked like a little boy trying to cover his face from his mom. Only, this was my father and I know he was trying to hide his vulnerability from me, his daughter, to whom he has always been the strong one. I sat with him and told him that ultimately it would be better for him. That he would not have to wear the IV pack anymore. And that he would be taught to walk with a prosthetic and able to try to get back to a normal life.

I don't know what the future holds...no one does, I know. But I continue to pray for strength for both of us, so we can face this trial.

Cautious...some good news

Today my father was tested in the hyperbaric chamber and the test went well. Not great, not fantastic, not terrible, but well. Well enough to say that hyperbaric therapy might be helpful for my dad. That means, if Dr. D. is happy with the results of this test, he will determine the course of action and, I'm hoping, set into motion steps to resolve my father's current health situation...namely, determine how much will need to be amputated and when and how all that will occur.

I'm happy (cautiously, 'cause I don't want to be disappointed) because this bring bring resolution to his health and he won't have to wear the PICC line very much longer. Happy because for the next few weeks we don't have any doctor's appointments and can face Christmas on a positive note. It's been so busy these past few weeks with doctor's appointments, hospitals and sadness. I've been doing well for the most part, but the last month or so, I have been exercising less and eating more. I'm glad school is almost over and I'll have some time to rest. I'm going to try NOT to think about the new year, as it will be busy right from the start with my dad's appointments again.

Worried and feeling very tired...

Since I last wrote, my father's been released and is at home. I quickly had to set up some more supports for him in the home - a personal care giver, increased Meals on Wheels delivery, and taking over some household responsibilities like groceries and banking. Tomorrow we see Dr. D and Friday we see Dr. E. We saw Dr. E last week (I think...I'm beginning to lose track) and this week my father will be tested in the hyperbaric tank. I'm praying for the best, but prepared for the worst.

I feel very drained by all this. I haven't been taking care of myself and I'm very rundown. I can't wait until the Christmas break. I'm hoping I'll have some time to recoup. Work is usually easier after the holidays and before you know it, it's summer break.

Day 26 (my day 13) - A Home for the Soul

I am at home, no matter where I am.

This week has been like coming home, in more ways than one.

Somehow, I feel Earth week is MY week. I am a tree-hugger. My husband and kids are tree huggers. My parents grew up in villages in the mountains of their country where nature was respected for it's power and glory. The focal point of our home renovation was the addition of a greenhouse-like front entry. Our foyer has nine sky lights and is flooded with light when the sun is out. At night, you can see the stars and the moon, and during a shower (or thunderstorm) you can hear the water hitting the glass. Our foyer is filled with plants that flourish under these conditions.

This week, also, I brought my father home from the hospital and arranged services to support him. Being in my childhood home makes me feel grounded. Though my current situation is difficult, I stay strong (or, at least, am trying to stay strong) through the grounding I have in my family and in my faith. My soul truly feels at home, no matter where I am.

Today, I plan to complete the circle by creating an alter at work so wherever I am, I have a place to land.

Day ??

Past few days have been busy with my father...getting him home from the hospital, setting up home care, medications, etc. Am still detoxing, both my body and spirit. It's been a very emotional time and I'm just moving forward as best I can. My father's always said, "just push forward" ...he says, "you can't stand still"...and I guess that's what's helped me get through so many difficulties in my life.

This morning I woke up with a song in my head...."put one foot in front of the other, and soon you'll be walking 'cross the floor; put one foot in front of the other, and soon you'll be walking out the door." These lyrics were sung by Mickey Rooney in "Santa Clause is coming to Town" and I've posted them below.

Strange as it may seem, there are a few tv shows (mainly TV Christmas specials) that have made strong impressions on me and my perspective on life. Another scene/song which, as a kid (and as an adult), made me feel OK with not always "fitting in" to society's norm is from "Rudolph the Red-nosed Reindeer" where Rudolph and Herbie sing "We're a Couple of Misfits". That show, in particular, is full of songs that I relate to....but I'll save that for now....like Clarice said to Rudolph..."there's always tomorrow for dreams to come true, tomorrow is not far away."


Put One Foot In Front Of The Other
by Bass, Jules

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

You never will get where you’re going
If you never get up on your feet
Come on, there’s a good tail wind blowing
A fast walking man is hard to beat

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule be the exception
A good way to start is to stand

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If I want to change the reflection
I see in the mirror each morn
You mean that it's just my election
To vote for a chance to be reborn

(repeat chorus twice)

Day 19 (my day 6) - Facing your death, Embracing your life

I live in the present moment with courage and love.

This affirmation says it all. With my current situation with my father, I am everpresent in th enow and facing what every day brings with courage and with love. As I lit my candle on Thursday, I repeated "Although I have a body and identity, it is not who I am. In my essence, I am Divine Light." I am at peace with my life and I am always aware that today could be my last day. Denise's questions 3 and 4 for level 2 are rather difficult to answer because although I try to live to avoid making decisions I regret, there will always be regrets - choices and actions we could have made differently.

The following is a prayer I learned from a yoga teacher many years ago, and I find it helps me centre.

The Divine Light Invocation

I am created by Divine Light
I am sustained by Divine Light
I am protected by Divine Light
I am surrounded by Divine Light
I am ever growing into Divine Light

Ever time I repeat it, I feel warm and peace, may it bring you the same.

Father in hospital

This has been another difficult week. My father's breathing seemed laboured on Monday when we went for his audiology test. I considered going upstairs in the clinic to see his doctor, but then I thought I might be overreacting. Tuesday I could still hear his breathing over the phone, then Wednesday when I called from the workshop it's sounded worse. I left early, went over to see him, and called the doctor's office to ask them what we should do. They said to come right over. They took my father in right away, sent him for x-ray and ECG and sent us to the hospital - congestive heart failure is what the doctor said he believed was going on.

Once we got to TEGH they promptly took us in. After a number of tests, they decided to admit it and that's where he is now. I'm frustrated because I haven't spoken with his doctor and don't know is going on. The doctor told my father he is going home on Monday, but I'm not sure that would be a good idea. I don't know what to do. This is probably one of the toughest situations I've ever been in...I feel so alone in making this decision. I pray God will give me some insight into what I should do.

Need prayers

My father was admitted into the hospital last night for cardiac problems (still don't know exactly what, but he is in the cardiac acute care wing of the hospital).

Blister packs

Trying to make things easier doesn't always. I asked my father's doctor to order his medications in Blister pack pill dispensers in order to make it easier for him to take his pills. Well, it hasn't gone too well. I called today and he was upset because he couldn't figure them out. I guess it's my fault because I didn't get to his house after school yesterday when the first pack was delivered to explain to him how to use them. I asked him to ask the VON nurse to help him, but I guess he didn't. He was so confused when we got there this afternoon. He was in tears as I tried to explain it. I got very frustrated and my daughter, M, explained it to him slowly and he listened to her. I fee so bad. I don't know what to do. I think I'm right leaving him at home and having CCAC help with his personal care and light house keeping, but I always feel guilty. There's so much I need to do for him, for us, and yet I feel paralyzed.

Long-term care

I met with my father's family doctor, Dr. WO, yesterday. I needed to get some repeats on prescriptions and ask the doctor for the referrals Dr. WE needs before he can test my father for the hyperbaric therapy. I also talked to the doctor about proceeding with filling out the paperwork for my father to enter long-term care eventually. Dr. WO mentionned that he was one of the doctors that works out of one of the long-term care facilities I was considering and that he could help get my father in if we decided we wanted him to go there. That is somewhat hopeful. In the meantime, I have to get my dad to have the tests he needs done, get his medications in order, and move forward from there...whatever "forward" is.

My son, P, told me about a former student from my last school who passed away recently at his own hands. It's so sad. I remember the student as being a dynamic, yet unusual, young man. One who was involved in various creative aspects of the school. He apparently was a talented diver and most recently an upcoming fashion photographer who was well known in that industry. It's always so hard to hear about the death of a young person. Someone who seemingly had everything to live for, yet, obviously had some demons of his own that he couldn't cope with. So sad, such a waste. Contrast that with my dear father who is fighting for his life.

Bad news...

I got the news from the vascular surgeon yesterday...they can't do a bypass surgery on my dad's leg because there are too many blockages in his veins to support the surgery. That means, if things don't miraculously get better (or, conversely, don't get worse) my father might have to have his lower leg amputated. I don't know what to do. I am so worried about him. I have talked with his case manager from the Community Care Access Centre and she's set up some supports for him. I think I need to think about long-term care. I don't know what to do...I hate this...I feel so bad for him.

I don't know if he understood what I told him regarding this doctor's news. He seemed happy - I think he confused this surgical option with the surgery for removing the leg. I'm not sure. He said something that really disturbed me. He said that he was happy with how much time he's had. I didn't pursue the conversation as I think I knew what he meant.

what's tough about being an only child?

You're the only one. The only one to take care of your mother when she is dying. The only one to take care of your father with whom you have never really had a good relationship. The only one to make a decision on elder care for a father who has always been strong and is in both physical pain from a terrible infection on his diabetes ravaged body and is mentally in pain because he can't be the strong father figure his only daughter has always know.

What's so tough about being an only child? There is no one else to share stories from when you were a child. There's no one else to share in the pain when you lost your mother and are watching your father grow weaker as he grows older.

What's so tough? There are only the memories you have...alone. The stories you try to share with your family who really don't understand or, maybe, don't care because they have their own memories they are building.

It's tough being an only child...even when you're 50.