Monday, November 30, 2009
I received a call from him around 10 til 1 saying he wasn't feeling well and asking if I would come over. I was planning on going over anyway and collected my things and the new 8x10 photo of Dad and Mum and went on my way. I am very thankful that I am only two minutes away from his home. Dad was confused and not feeling well when I arrived. I sat with him and tried to assess the situation. I called my brother to no avail. I was on my own. Dad seemed winded but not like he was when we called 911 a few weeks ago. I knew that the hospice nurse was due by 2pm. Dad took his breathing treatment...the first of the day I believe...it seemed he may have missed the first two but I am not completely sure. Anyway it quickly became clear that we were going to have to use some of the meds in the comfort box that has been in the fridge since we started this hospice journey. I was very nervous, afraid even to break out these meds. I tried my brother again and when I couldn't reach him I called hospice. After fifteen or so minutes I was able to speak with the nurse manager (?) and she talked me through the first dose of morphine. I was shaking and ended up spilling a little on my fingers. I guess in the back of my mind I was holding on to an irrational fear that if I gave him the morphine he would die. After giving him the meds he seemed a little bit better and I sat with him and once again read from the True Compass. Thank goodness for that book. It seems to have a calming, almost meditative effect on both Dad and me. At about 2pm D our nurse arrived. She asked some questions and praised me for knowing what to do. She watched as I administered the second 5mg of liquid morphine. She said I was perfect. By that time my brother and sil came upstairs to find out what was going on. We ended up giving dad some ativan on top of the morphine and by 2:45 he was much better. Oxygen was ordered and D assured us that she would have the nurse on call, L give us a ring tomorrow to see how Dad is doing. D said we should probably start thinking about a plan for when we need more coverage to keep Dad safe. So let the planning begin.
I ended up staying with Dad for quite a while. We read more of the Kennedy book and he seemed much better. The oxygen was delivered and we were instructed on how to operate the machine and keep everyone safe when the machine was operating. After that lesson my brother and sil left and I was about to go too when Dad made a comment about there being a mass exodus. So I sat for a bit longer. I asked him if he wanted me to read a little more of our book and he said "No, just sit there so I can look at you." And that is what I did.
Sunday, November 29, 2009
Saturday, November 28, 2009
Friday, November 27, 2009
Hot artichoke dip before.
Nothing like a little horse play to build up an appetite.
Traditional olives and stuffed celery in Mum's beautiful serving dish.
Thursday, November 26, 2009
Wednesday, November 25, 2009
We also received a call from the health care aide. She'll start on Monday. After that we heard from my brother. The social worker had to reschedule. We'll see her on Monday too. The nurse came out yesterday and checked on Dad and I heard from Dr. O and both are in agreement that alcohol should not be reintroduced into Dad's life. I am relieved that my opinion and concerns are being validated and supported and that Dad will be safe.
Tuesday, November 24, 2009
Just a quick post today. The children are anticipating the holidays as I anticipate what the next weeks and months will bring for my family as we walk with Dad on his final journey. I suppose there is a level of emotional exhaustion that is playing a role in how I feel right now. I'm trying to remember to breathe and live. I'm also working on asking for help. Much has been offered and when the time is right I plan to reach out.
Monday, November 23, 2009
Saturday, November 21, 2009
Plans had been made for a visit over at Dad's with some cousins. I got a call from my brother around noon time today saying that Dad wasn't up for visitors evidently he didn't have a very good night sleep last night. I have to say neither did I, but I guess that is beside the point. I think that Dad's unrest was due to some disturbing events that took place last night in Dad's living room between myself and my brother regarding Dad's well being. After receiving the call from B I headed over to Dad's to see how he was doing. As soon as I arrived B came up and offer to help bring in the groceries. (second or third time this has happened in the past 5 or so years!) I brought in the food and Dad was sitting up and looked OK. When I asked him how he felt he said OK. He didn't indicate that he was tired. Then B came in and when I asked Dad if he was up for a visit he said maybe not. I think that if I had a few minutes alone with Dad I could have changed his mind. But I thought considering things that were said to me and about me the previous night it was best that I didn't throw around my "control" so to speak. Anyway I ended up spending the day visiting with Dad. We chatted and shared stories. Later I read aloud from Ted Kennedy's True Compass. As is customary my nephew came up and sat with us for a good length of time. I'm not sure why he does this but he does. It's all very interesting. I am going to have to work on not letting the interpersonal things upset me and settle into my heart and mind. This is a very challenging road that I am walking.
Friday, November 20, 2009
2. My children came home and it made me smile.
3. If you want to live fully you must accept what cannot be changed.
4.Relieved because in my heart I know I'm right.
5. Massachusetts has a proposed 5% sales tax on elective cosmetic surgery; I think that there are way more important issues to be considered!
6. Family makes for a happy holiday.
7. And as for the weekend, tonight I'm looking forward to relaxing and reflecting, tomorrow my plans include Thanksgiving Parade and Sunday, I want to rest!
Thursday, November 19, 2009
Here is an article with some details about the task force and it's report!
Wednesday, November 18, 2009
Tuesday, November 17, 2009
We also met with Dr. O yesterday. He was uncharacteristically kind and compassionate. He was clear and concise in his explanation to Dad of the choices available. He could choose the surgery or choose to do nothing. He explained that by choosing the surgery it would mean a hospital stay, a rehab recovery and a change in quality of life. He then went on to explain that choosing to do nothing would mean that hospice could come in and give us support keep Dad comfortable and keep Dad at home. It would mean that he would die in 6 months maybe later maybe sooner. He explained that by sitting at home and not making a choice he really is making a choice. The choice to do nothing. I told Dad that it was OK if he wanted to choose to do nothing. It was OK. At that point Dad said that he really didn't want to do anything. Dr. O simply said OK and proceeded to call the Hospice team to discuss some particulars. There was not judgement. It was good.
So now there is a kind of relief. Dad has a better appetite. We'll be getting a wheel chair. We are planning to go out and do fun things; Cupcake Charlies, Daniel Webster Pub, Christmas lights, visits with relatives. He doesn't have to worry about a hospital stay or doctors appointments. We can just be.
Monday, November 16, 2009
Sunday, November 15, 2009
Lately I have been thinking about seasons. The seasons of a person's lifetime. For everything there is a season. These reflections brought me back to a song that 'R' introduced me to over 20 years ago.
Saturday, November 14, 2009
The above quote is what I read on the page that I turned to when I opened Transitions by Julia Cameron. I was looking for inspiration for my writing tonight.
Motion, movement, mobility, hover, shift, drift, sweep along, flow, run, tread, glide, slide, roll, stream, wander, deviate, keep going, keep moving, put in motion, set in motion, go.....
We are all in motion.
I am in motion.
Dad is in motion too.
Shuffling, sliding, stepping, walking, creeping, treading, drifting, sweeping along, going..... slowly, deliberately, carefully, cautiously, gingerly, precisely, anxiously, fully, thoughtfully
Beauty in motion.
Friday, November 13, 2009
2. What I look forward to most on Thanksgiving is getting up early making stuffing(nibbling some as I go) and watching the Macy's day parade with my kids. That's just for starters. Thanksgiving is my favorite holiday. It is all about food. No stress around gifts and such. I can't wait for Thanksgiving.
3. My Christmas/holiday shopping is just begun. R is planning on going out on Black Friday. I'll make the lists and he'll buy the gifts. :)
4. Thoughts of unplanned transitions fill my head.
5. I wish I could wear skinny jeans and leggings.
6. Bagpipes remind me of Ireland and funerals.
7. And as for the weekend, tonight I'm looking forward to resting, tomorrow my plans include Cupcake Charlies with n and Sunday, I want to watch football with the family and I'll be visiting Papa on Sat and Sun!
Thursday, November 12, 2009
Yesterday I found a book at Borders. It was almost like the book found me actually. I was browsing the self help section and I noticed the navy blue binding with a lovely asian style floral painting. The title of this book is Transitions by Julia Cameron. I read the book flap and then read the introduction. The third paragraph of the introduction spoke to me.
"This book concerns change: the difficulty of change, the possibility of change. It also, at ground level, concerns the acceptance of change. So often we try to live through our changes without experiencing them. When life is difficult, we tune out, focused on the future. 'I will be happy,' we say 'when this happens' r 'when that happens.' Or , 'When that begins.' Focused on life as we yearn for it, we neglect to live the life that we have. 'This shouldn't be happening,' we tell ourselves in difficult seasons. Meaning, 'Once this is over, I'll get on with my life.'.....It is usually the emotional burden of a difficult circumstance that causes us to move through it numbly, cut off from our spiritual resources. A sudden illness, the death of a spouse, the unexpected loss of a treasured job, a cherished friend's moving away-any of these may be sufficient to disconnect us from our ongoing sense of the fruitfulness and purpose of life." ..... "This book is intended as a conscious companion for difficult times. It is also planned as a model for you to work from. The writing of positive, affirmative prayers is a deeply healing spiritual antidote to the pain of anguished moments.
Yesterday I thought I would branch off from my regular writing to chronicle my experiences and share news about Dad. Now I think that it would be important to try and keep all pieces of my life integrated. Even as I know that there will be times when I must focus my attentions to tasks at hand this thing, this process of Dad dying is going to be with me, just below the surface at all times. As difficult and painful as it will be I have to live through this experience.
So I think this book will be helpful. And the journey continues.
Wednesday, November 11, 2009
I guess I'll sit on this for a while. Any thoughts or suggestions are welcome. A note to my lovely cousins who are checking in please feel free to comment or send me an email with your thoughts.
After the jaunt to the hospital on Monday I had to bring Dad into the ENT office to be looked at and I also had to cancel a nuclear stress test that had been scheduled for today at his primary care physicians office. I was able to make the appointment easily. I had anticipated having to put on my 'witchy' hat to get the appointment but happily I did not have to don that hat. I was also worried about canceling the testing. I had been told that 24 hours would be required to cancel otherwise we would get hit with a $200.00 fee. Everything worked out fine and the woman who schedules those appointments, 'E' was very sweet offering her help if I were to need anything. She also gave Dad's primary care doc the message that we cancelled the appointment and are opting not to do the surgery. As I reflect on the day I am struck by 'E's understanding. So the day moved on and we went to the ENT. Running late as usual I was in pretty much a full panic as we walked in the door. At this point I have to drive to the door, bring Dad in and then get the car parked collect myself and my stuff and get into the office. Just writing this takes my breath away a bit. So I apologize to the receptionist, expecting that I'll be chastised for being late, and she was so understanding! ' Don't worry' she said. Sigh! So what happened next was what shook me a bit. I wonder what you might think. We were expecting to see the ENT physician. We were ushered into his exam room. Dad was prepared to be scoped and then shortly thereafter a physicians assistant came into the room. She said she wanted to make sure that the sprays had been administered and I went on to tell her about our decision not to do the surgery. She then asked permission if she could look in the scope when the doctor came in so that they didn't have to scope him twice. I thought this odd. I'm guessing that she is learning on the job or maybe Dad's situation is unusual. I don't know but as nice as she was I was not that comfortable. So on with the story. The Doctor came in and was shocked by our decision. I tried to briefly explain to him why we had come to this decision and he asked Dad why he didn't want to have the surgery. Dad couldn't answer. I reminded the doctor that Dad doesn't remember he has the cancer never mind the surgery. He talked about how the surgery would 'cure' Dad. I felt so frustrated by the fact that he didn't listen to what I was saying. Perhaps it's his clinical/medical mindset that prevented him from hearing our dilemma. I don't know. He went on to suggest that at the very least we put in an airway (tracheotomy) so that Dad won't suffocate. The entire appointment was disturbing. We have to figure out if we go forward with the tracheotomy by the end of the week. I asked Dad what he thought on the way home and he wouldn't even talk to me.....I think it must just be too much for him. It's too much for me too.
Later in the day I did talk to the primary care doc. He got it! He wasn't judgemental, he listened and he offered help. I could cry from relief just thinking about it.... He is contacting a social worker with hospice so we can meet with them and see what that process will entail. He said that if the conversation with hospice changes Dad's mind we can still go forward with the surgery if that is what he wants. He did say that either choice will be very difficult.
Tuesday, November 10, 2009
Monday, November 9, 2009
While working on conferences over the phone with my teaching partner S, my phone beeped several times. My caller ID screen was not working so I didn't answer the beep. Well I switched phones and sure enough I had another beep. It was Dad. I clicked over and he asked if I was still planning on coming over today. We had spoken around 10am and I had told him that I would be over around lunch time. We would have lunch together and he'd have his shower and prepare for the tests he has to endure on Wednesday (nuclear stress test) . When I spoke with him at 10 he sounded fine. At 12:30 when he called me he sounded different. He said he was having a hard time catching his breath. I told him I'd be over but first I was going to have T go up and check on him. I called her asked her to head upstairs and that I'd be over in 10 minutes. She called me right away and said he looked bad and thought we should get him to the ER. 911 was called and we spend the rest of the day in the ER. His 02 sats were down at home but recovered nicely once he was on oxygen at the hospital. I think he must have been scared but he didn't really remember how or why he was at the hospital. They ran tests and everything came out ok. No blood clots, nothing on the chest xray, heart test came back good and the final determination was that he had mucous blocking his airway for a time that caused his oxygen to fall. Now he is home with new meds for his COPD that has gone untreated until now. I hope this treatment will help him be more comfortable. We'll be going to the local ENT tomorrow to be checked out and have made the decision not to go forward with the surgery. Seeing Dad in the hospital today solidified that decision for me. We'll talk to Dad's primary care physician to see what our next steps will entail. Please pray for us as this will be a difficult road.
While I understand that students, parents and teachers must be accountable for children's learning I worry about what education looks like today. There is much discussion about increasing the rigor of academics in our local schools. So much is expected of children and families. Young children are being held to standards that are rigorous and in many cases developmentally inappropriate. What is going to happen to these children if by the 5th grade they are unhappy in their education and not feeling competent in their abilities or confident in their teachers. I wonder if the pendulum will swing back in the other direction perhaps alleviating some of this pressure.
Sunday, November 8, 2009
1. Plans and schedules keep life moving smoothly from September to June but are things I happily abandon once vacation comes around.
2. I'm happy when things are copacetic if you know what I mean ;).
3. The last thing I drank was an ice cold water bottle.
4. One of the most valuable things in my life is the time I spend with my family just 'being' together.
5. I like pepperoni on my pizza.
6. Dear November, please give us the time we need to ease Dad into the holiday season gently and to prepare us all for what will come over the next several months. Let all the hurts of the past be healed and the promise of everlasting life fill our hearts.
Saturday, November 7, 2009
Friday, November 6, 2009
Over the last weeks I have been grappling with Dad's declining health, cancer diagnosis, treatment options and how and when to share this information with extended family. I took the plunge last night by sending out a prayer request to family. I must say I am overwhelmed with the responses I have received. Just when I felt like I must face things alone with only the support of my immediate family I have realized again that none of us are truly alone. All you have to do is reach out to those who love you. I am learning to do this and to ask for help. Responses started with a call from my BIL, T late last night and moved on to heartfelt emails and facebook messages from my 'big' cousins today. I also heard from my dear friend M. The thoughts and prayers of these dear people mean the world to me, more than they know.
Thursday, November 5, 2009
Wednesday, November 4, 2009
Tuesday, November 3, 2009
Monday, November 2, 2009
Could she be any happier? We had so much fun doing her makeup! I don't want to grow up too fast but I can't wait to buy her some Bare Essentials beauty products.
Sunday, November 1, 2009
That being said I'll give a very brief update on Dad's situation. This past week we went to our local oncologist in the hopes that there might be some medical option that would save Dad's voice. We found out the the cancer is a T3 or T4. It is a slow growing cancer and has probably been growing for at least a year and a half. The doctor was so kind. I had a long list of typed questions that he answered. He told us that the medical option would not work for Dad. The coarse of chemo and radiation would be so strong that the treatment would likely kill Dad. So our options are clear. Go for the surgery and save his life or do nothing and the cancer will continue to grow and eventually cause him to aspirate get pneumonia and die. The doctor bluntly said it is not a nice way to meat your maker. He also said that if it were his father he would have him go to Boston for the surgery. So I guess our decision is made. I must say that I am terrified that he will go into surgery and either not come through the surgery or that he will end up in a nursing home; something he is adamantly against. Tomorrow he will see his primary care physician and we'll talk to him about if Dad is strong enough to endure a 6 hour surgery. Sigh...... Next Friday it is back into Boston. We'll see how quickly we can get the ball rolling.
On another note the NAEYC re accreditation process is moving forward for my school. The validator came last year and was very pleasant and respectful of staff and children. She looked at my class and portfolio, two other preschool classes and the kindergarten. Off the record she said we had a beautiful school and that we were doing a fabulous job. We'll be celebrating on Tuesday with a special luncheon. Yay!
Well off to figure out diner. I'll post some Halloween pictures tomorrow. The kids looked great and I decorated the table for the evening.