Wednesday, October 31, 2007

Hallowe'en is Here! A Favourite Time

Photo 1: John or MJ?

Photo 2: Who?

Photo 3

Photo 4

Photo 5: MJ

Photo 6 Our Maestro

Priest and Organist:Doesn't he look handsome?

This is one of our favourite days and we cannot go out. However, we have lots of pictures and memories and John's hearing and memory are still sharp so we can reminisce once more. It was great for me to meet someone who loved to dress up so much! This will be the first Hallowe'en in 20 years when we are not running around the house scrounging up some made up costume.
You should have seen John- like a child. Even when I had had a long day at work and debated whether or not we would go out again, I'd come home and just open the door to John sitting there "waiting" and quickly stating, "So, who are we going out as this year?". That child-like excitement got me in the mood pretty fast!

So, can you guess which character is which one of us?
Photo 1- is me and Photo 2 is John. I have to tell you that so often even after folks learned that in that costume it was John and I, mostly they thought John was the "male gender" and I was the "female character". (Doesn't say much about my legs- Everyone would lift John's skirt and suggest a female name or thought it was me....seriously though his legs look great in panty hose and high heels!).

John and I would drive around various parts of Toronto, dropping in on friends and family who usually didn't have a clue who we were. Some wouldn't even let us in their homes, being bothered by the knowledge of personal information we knew while not disclosing who we were. And, driving around itself was a hoot- probably a dangerous things for others because the stares we got potentially could have caused accidents as people were assessing the car next to them!

I had to always act in "silence". I could make gestures and not blow it, but once I opened up my mouth I typically blew it with uncontrollable giggles. Not John...he could maintain a high pitch voice and character for at least 30 minutes, with no laughs or even a pause! The performer in him I guess!
We enjoyed being clowns also- although most people knew me from the shape of my face and would just say "Oh Hi Mary Jane"...which kind of bugged John.

The last set of photos was taken on our cruise last year to the Mediteranean. We hadn't packed costumes and on the ship a "show" was planned for guests that required participation. We were considering just bailing out since John was the ship pianist and was already a performer, but at the last minute (and I really mean with 45 minutes to go) we decided on a concept. I knew John had a black jacket and pants with him and I quickly made a collar from paper. There was a piano/organ on board so I suggested I would be the organist and he the priest and that we write new lyrics to Amazing Grace. John asked me to leave him for 20 minutes while he quickly wrote a brilliant lyric about all of the cruise staff. I hunted around the ship for our props: the Bible, flowers for my sunhat and an umbrella. When I returned we dressed quickly. In we went to the main room in costume. Again, John was beautifully in character, blessing folks as he walked to the stage and gathering them up in a congregation. I walked over and played the organ. He gave a brief sermon and then sang his lyrics. Then he turned to me and stated, "Madam Organist...that is just a little too serious and stagnate for this congregation". Over he came to the organ, asked me to move aside and of course we were all treated with delight to "When Ragtime Rosy Rags the Rosary!" Need I say more? We were a bit of a hit that night!

Anyhow, we are home now having a few laughs tonight and a bit of sadness too. John is further weakening and he knows that. But he feels so blessed to be at home. He is pain free and he is so glad that he can hear music. We usually start out with Ragtime or up tempo tunes in the morning, than shift to opera or strings in the afternoon and by night I put on his own CD's, usually something quieter for soothing and to help him rest. It really works. And, it is really something to see the response when you try to "attune" the music to his state of health or emotional/physical state. I find I can really make a difference through music in keeping him comfortable.

Every single day he thanks me for caring for him at home and expresses his feelings to me which of course breaks my heart. He also sees his children daily and hears about their days. And, we have two pumpkins over here carved by his grandchildren and some photos in their costumes....all important stuff.

Although it is sad to see him so ill, there is laughter and also some times where the silence is all we need. He knows he cannot do many things now and he realizes he faces the end of his life. And, we are all preparing for that and feeling that his grace, acknowledgement and charm are helping each of us to cope. It amazes me to see how generous of spirit he is right up until the end and just how important music continues to be with such impending finality.

I also read letters to him, which he really enjoys when he has the energy to listen to words. He knows he is loved by all of you and blessed and that means a lot to the whole family, as well as him.

He's quite a treasure....our John.

Now, tonight, do I put on our tapes of "gobbly ghostly musicians and howling wolves?" or another John Arpin CD? That's an easy decision, of course.

Enjoy the night!

Best Regards,

Mary Jane

Sunday, October 28, 2007

Singing in the Rain

Hi Everyone,

John and I are touched by all the cards, emails, posts and calls. It is marvelous that he is still alert enough to enjoy all of your expressive thoughts and feelings. Each day I remind him how much he is loved and how wonderful it is he is really able to hear and see everyone's words.

This week John is becoming more and more weak, only in body however. He still is comfortable but does require greater periods of rest. As a result visitors now are primarily family and closest friends. It was a difficult decision for John and I to decide to decrease the number of visitors to our home. His current level of energy simply does not permit as much opportunity for loved ones to visit. So, we hope that this is something that all of you can understand. John, being the extrovert that he is found it a difficult choice to make, but realized he needed to maintain his energy for his family and closest loved ones.

It's been great that he has had opportunity to see several of his friends over recent months or during concerts over the past year. Now, he must rely more and more on written notes and messages through the family and I.

John still listens to music- all day long. And, that includes all kinds- opera, string, classical, jazz, new versions of jazz. Of course we slip on at least two John Arpin CD's each day. I'll never ceased to be amazed how even during his weakest physical states, and often when I think he is sleeping he will make a remark about some musical piece, or correct anyone in the room who mistakenly names a tune or composer. John can always accurately name the composer and title. As you can imagine, when these events occur we don't just hear who the composer was, but learn much more, including anecdotes about the musical piece, or the composer, a comment or two on his/ her character, training, or background, and even on how a piece came about. That' John- always a story-teller. For him no lyric or piece exists on its own...ever! It is always situated within a context.

I must tell you a funny little anecdote about our care for him, although it's a bit personal (he gave permission for me to describe this).
You know when you are ill you often have to be assisted to go to the washroom etc...
A technique often used in nursing training to help when someone feels too anxious to urinate or feels shy is to run tap water.
Well, I suggested something else in John's case, which worked beautifully and resulted in an evening of full entertainment! I suggested that we simply start singing all the songs that we knew with "water themes"! Well that got John really going. For me, I often could only get as far as two or three lines of a song if I started singing the tune. However, John was sure to finish it, and that included every verse! That bathroom break took quite a long time as John kept going with us all...and the personal care workers had a riot. (I'm sure they had never realized that there were so many tunes with water-related words). Songs like....."Raindrops Keep Falling on my Head" (some workers inserted bed); "Singing in the Rain"; "Down by the Old Mill Stream"; "Row Row Row Your Boat"; and "I'm Forever Blowing Bubbles" were among the many.
What a laugh! The technique resulted in several outcomes: The bathroom break was successful; John's spirits were further lifted; John's pain was reduced: Any stress I may have had disappeared; The personal assistants became even more jovial; and the "team in the room"- John, personal assistants and I acting as a kind of "group" reached a higher level of cohesion! And, this technique has no side effects!

Music therapy is a field of its own, with research based on several studies demonstrating its healing impacts on a variety of areas, including: management of pain symptoms, distress reductions, the alteration of physiology and in assisting individuals to reach personal goals!

The main point of this story really is one that you all already know - the power of music, in particular, John's music. Further power is achieved through the direct participation in music. So, for John to have to participate in an event where he is the main stage performer and which involves singing, the calling up from memory thousands of lyrics, the teaching of the staff and I to learn and sing along the lyrics, and which encourages the physical use of his lungs and other areas of his body there can be potentially remarkable effects. Of course the impacts include those of a psychological and spiritual nature, but I wouldn't underestimate the power of music at a more biological level.

Now, we have a new nightly ritual-no "good nights" for us until at least 3 tunes have been sung...and we promised "no repeats". I won't win at this- John will of course, as he knows far more tunes than I (But then of course he is 25 years older than me and has had a head start!)

I cherish these moments, and seriously, they really help with all the other stressful stuff. I have to observe disease progression each day-a change in one system or the other, more difficulty breathing or eating, or a change in his pain status. Seeing John's spirit latch on to something like the sing a-longs helps me to cope and reminds me that John will live life fully right until the end...and take a several of us along with him.

He is the most gracious patient I have ever seen...apologizing for any demands to our assistants and thanking them over and over again. They all love him of course. And, I see more and more, just what a precious fellow he is. I'm one lucky woman to have shared his life. That's what keeps me going.

Talk soon.

Best Regards,

Mary Jane

Saturday, October 27, 2007

John in Concert in Hungary

John in Hungary

Enjoying Venice

Wednesday, October 24, 2007

Family Photos

Mary Jane, John & Granddaughter Brianna

Tuesday, October 23, 2007

Photos of John and his family

John and his daughters Nadine and Jenny

John and his granddaughter Nicole

John and his grandson Kurt

John and his son Bob

Grandson Alex in Skating Performance

Grandson Alex Performing

The Little Blue Gardenia Arrived!

HI Everyone,

I should have known...that a bright blue gardenia would arrive. One of John's dearest friends and fans brought over a perfect blue gardenia.....a surprise for John and of course he was touched. It now sits on our fireplace and its unique look stands out amongst all of the bouquets. I had told John of the blog posting...and he smiled when that special gardenia arrived within 24 hours of the post.

Acts such as those are frequent and really remind us of how blessed we are to have such friends and colleagues. John sure knows some unique and special folks. Today, John's daughter read the blog postings to him as he rested and we read a number of emails to John. He's fully alert in between his naps and always feels the warmth of all those messages, cards and emails. I think they help him to refuel, to reminisce and to remind him of how many hearts he has touched. I'm convinced that these kinds of actions and thoughts help him to feel comforted, and to prepare for what is ahead and serve to give him a real sense of peace in the notion that he has fulfilled so many of his goals.

Although it is difficult to see John's physical self fade, his spiritual and youthful selves are still very strong. This allows us to enjoy discussions- some which are so meaningful and important to have- about his remaining life and future, and some concerning his memories of his very full life and adventures.
Bodily energy can decline, but it takes so much more to puncture such a vibrant personality as his, and as you know he is not a tall man, but a giant in so many ways.

I often tell the assistants and nurses that it would have been fabulous for them to have seen John's gift and talents in performing his renditions and to have seen him in full color, telling a story, etc. Yet, they remind me daily how often they have observed directly his capacity for story telling, is authentic presence with everyone around him and his love of humor and his wit. Those qualities outshine everything else right now. Even though episodes of story telling or introductions to music are interspersed with periods of needed rest it is lovely to be able to still converse, talk about the news of the day, music or other things. And, as always he loves to hear about the doings of others, particularly his family- children and grandchildren who visit often.

John receives all of your messages. Again, thanks so much for all of your thoughtful letters, phone calls, emails and posts. They do not go unnoticed and I'm sure they contribute to the vibrations right now that fill our home- those of a healing nature.

I hope in some sense that they help you also to heal in the anticipation of this most significant loss.

Best Regards,

Mary Jane

Thursday, October 18, 2007

An Update on A Favourite Pianist

Hi Everyone,

Not all of you may be aware of what John is dealing with, although I know some of you are aware. John has terminal cancer now and although we were hoping for palliative surgery this fall, that is not an option now, given his health state.
John has had a couple of hospitalizations over the summer and managed to do one concert- in Collingwood, Ontario, but just recently cancelled his fall and winter performances.

He is now at our home and is enjoying one of his favourite rooms-our family room- surrounded by his books, cd's and stereo, TV and some favourite paintings. He enjoys visitors when he can and has lots of family coming to visit regularly, particularly his children and grand-children who he adores.

Although he is very ill- he still finds humour in many stories, loves to hear them and per usual is always checking on the welfare of everyone else who visits. And, as many of you know, John has always taken pride in his medical knowledge (often acting as pseudo doctor to many of you) and is conversing quite regularly with his medical team with terms even I have to occasionally look up in a medical dictionary. As you can well imagine his team is getting quite a kick out of him- self-diagnosing, using language your average lay person doesn't have a clue about, and participating actively in all decisions, often predicting responses etc. The good thing is that his physicians are typically charmed (rather than threatened) by his style and treat him with such respect and in a sense as almost a colleague. Needless to say- John loves this.
Lots of times I 'm quite happy to leave the room if a procedure needs to done or even a dressing change- No turning away for John! He's right in there, commenting on the color, procedure, type of dressing, palpating, percussing and just contemplating to "what is next"....
(I'm surprised he hasn't taken up to writing his own medical orders!)

But seriously- John is allowing himself to be cared for. All of his physicians and nurses enjoy him and his personal care workers who come in to assist us are asking to be scheduled to our home....just to be with him- Well you all know why...

Yes- his personality is vibrant still, and that is what we all cherish so much. It is difficult to see him fight an illness, but he does it with such class, grace and charm it is rather unique to watch and makes it easier really for the family and I to deal with.

John spends his time watching sports when he can, visits with family and listens to music. Music continues to be a source of enjoyment and I'm sure will comfort him always. And, we are all blessed to have so many performances from him and all those recordings....

One night, when I thought he might be half asleep or too drowsy to respond, I slipped on a CD and said, "I'm putting on a CD of who I consider the best pianist in the world" (the CD was John's Blue Gardenia")...and across his face was the widest smile......That CD is one of John's favorite accomplishments. I wish I could find a blue gardenia to give him.

Best regards,

Mary Jane

Friday, October 12, 2007

Keeping in Touch with All our Friends and Loved Ones

Hi everyone,

John and I are blessed in receiving so many calls, cards and visitors at this time with John's health issues. We have enjoyed all of your messages and appreciate your good wishes. Sometimes, the volumes of calls, emails and visitors are so much that we feel unable to keep up in making return calls or emails within what we would consider an appropriate amount of time. However, we understand your need to hear about any updates or progress or any other changes and appreciate that it is difficult to await information, particularly when you are unable to make contact.

So, it was suggested that a "blog" might be helpful in keeping loved ones informed and to assist us in our communications. So, I promise to do my best in keeping it updated with our happenings, John's health state and any other activities that might be of interest.

I'm new to this but have a team that like me to be "up to the minute" and I have good coaches to support me in learning new technology-I hope to eventually post photos or other things of interest....

Hopefully this forum will assist us all in keeping connected during a challenging time.

Best regards,

Mary Jane