A Kind of Relief

Well yesterdays appointments went as well as could be expected. The hospice nurse D and the social worker J were lovely. They explained the process. I learned that hospice doesn't just come in at the bitter end of a person's life; they come into a family's life when the ill person has decided to seek no further treatment for whatever terminal illness the are facing. The shared that some patients have been with hospice for over a year. I was surprised, and relieved by this information. They have quite a team. Nurses, social workers, chaplains, nursing assistants, and volunteers. They will acquire whatever Dad needs. They will take some of the burden off of us. They will help with meals, showers and meds. They will talk to us and Dad. They are like a beacon of hope in the very dark sea that we have been sailing.

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.

just be

Thinking

Just met with Hospice representatives. They were very kind. Will be going to perhaps the last doctors appointment at 4pm. I'm not sure how much dad understands. I can't bring myself to openly answer the question "Now, What does Hospice do?" I can't utter the words.... "They help you die." Just typing the words brings me to the brink of crying. This is so hard.

Peace!

Something I have been thinking about, a lot, lately.

Peace!

Seasons

In Transitions Julia Cameron writes: "As seasons shift, I see the purpose and beauty of life's cyclicality. I see the promise of spring, the ripening of summer, the bounty of harvest and the mysterious containment of winter...... There is no season in my life that is without worth. There is no season in my life that does not unfold my highest good."


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.





Peace!

Reflecting on Transitions

"The primary and most beautiful of Nature's qualities is motion."

Marquis de Sade

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.

Fingers typing, foot tapping, hands dusting, body organizing, mind racing. Motion external as well as internal. Always moving, shifting, drifting and going.

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.

Reassured

I had some reassuring conversations today with my cousins today via phone and facebook. I feel like we are on the right path with Dad. We will be meeting with a nurse and social worker from Hospice on Monday. They will tell us what they can do for Dad. They will ask him what his goals are and let us know if they can help us reach those goals. I think we should wait until we hear from them before we make decisions regarding the tracheotomy. I will post an update after our meeting.

Peace!

Friday Fill Ins

1. The last band I saw live was R's band Three and Out.

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!

Brief Update

So I spoke with the case worker for Dad's primary care physician's office today. She will be starting the referral process for hospice. I feel sick to my stomach about this entire thing and hope that we are making the decisions that are right for Dad and our family. I think that I haven't fully grasped the situation myself and that soon I am due for a very long cry. Once I start I hope I will be able to stop.

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.

Peace!

Curiosity

I was briefly watching something tonight, before the TV was high jacked by N. I saw a promo for an upcoming Oprah show. Evidently Oprah is having Sarah Palin on her show. To say that I am surprised is an understatement. I guess Palin is news of some sort but I am surprised at Oprah. I dare say disappointed. All that being said I feel like I should watch the interview. It reminds me of when people drive by an accident and are compelled to slow down and watch. For me Palin is an accident waiting to happen.


Peace!

Compartmentalize

So I've been compartmentalizing to get through each day. Trying to focus on the moment at hand or the task at hand. I've been placing Dad's situation into a box in my mind so that I can function and do what has to be done each day. I'm thinking I should do that with my blog too. I don't want Surfside Serenity to become just about Dad and his dying. What are your thoughts? If I branch off I'll create a link on the sidebar so that anyone interested in hearing updates can easily find them. Hmmmm...

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.

Peace!

Compassion

I'm learning more and more about compassion, expectations and understanding as we go through this process with Dad.

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.

Peace!

Food for thought.


"What we are is God's gift to us. What we become is our gift to God. "

Eleanor Powell

Dad

Today was trying.

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.

Thoughts on Education

"What we emphasize in education is generally what we get. When we emphasize achievement above all else, then we are likely to produce achievement above all else. High achievement is desirable. But at what cost? When education becomes focused on production — namely, evidence of demonstrable achievement — then we have lost what it mean s to be educated. Teaching and learning are not just about achievement or quality-assured products. They are about care, compassion, love, hope, joy, passion, grace, relationship, and more. They are about people and how we nurture and are nurtured on our ­learning journeys." observed Colin Gibbs at a recent educators forum.

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.