Finally I get around to completing my article called “My Journey to Palliative Care”.  In this part I give you a brief synopsis from my perspective of the time I had with some families including my experience with my Mom.  (I hope in the future to write more detailed articles of each experience with the hope of shedding some more light on the different facets of dying and death.)

After Dad’s death while still living in Vancouver, I continued to do my volunteer work at a hospice for terminally ill children, working at the same time while exploring and being open.  I knew I was meant to be doing something around death and dying yet it was so vague especially because I wasn’t a nurse, doctor or chaplain.  I was considering a course in hospice care but then we moved to Toronto because of my husband’s work.  At the time though I also knew deep within there were other reasons.  I had no idea at the time however, I just trusted based on the fact that I was so excited when we were asked if it was something we would consider.  Since I became so excited by the news I knew there was a deeper meaning.  I just decided to go for it.  Up until that point I had lived there for almost 20 years and had established myself quite well.  My husband had moved there from Toronto to be with me about 9 years previous.  I always thought I would live out the remainder of my life (our lives) there – no hesitation or questions.  I have learned over the years though when you let your life be guided by a higher force who knows what is in store.   There have been many blessings, many challenges and lots of learning about myself and about life getting settled in a new city even with what I believed.  You will see as the story unfolds possibly some of the reasons I was meant to move here.

I was able to make contact with an organization that gave support to families through pregnancy loss as well as provided education to the professional community.  I decided to become a volunteer because I wanted to give back.  I was also quite interested in the educational aspect of this.  I wanted more women to experience the respectful, dignified and loving care I received.  I learned over time that wasn’t the norm.  I also wanted people to know it was a devastating experience for a woman emotionally. It wasn’t about going on and being pregnant again.  The pain and loss runs very deep.

Though it took awhile I discovered this school called Transformational Arts College.  I wanted to do the Spiritual Director program mainly because of the death and dying portion.  Also their spiritual psychotherapy program outline really spoke to my soul.  I didn’t really want to become a psychotherapist, however, as I read the outline this thing just reached deep into the core of my soul and without any words to describe the feeling I just knew I had to do it.  I was hesitant because of the cost and I wasn’t working.  So when my husband asked why? – I didn’t have a full clear answer.  He challenged me further and again I had no words or explanation.  Instead he got my tears that came up and then only a few words – I don’t know fully why – I know it is expensive – I just know I am meant to do this course.  He was checking to see how serious I was and I really appreciated it.  It wasn’t just a whim.  I had been on my spiritual path for years and now since the loss of 3 pregnancies I was seeking a deeper purpose to my life and meaning of life. School provided me a safe place to explore myself.  I opened my eyes, heart and intellect to the many modalities of exploring the realm of healing as well as the spiritual aspect of each piece of us and our lives.  I was in a space of like-minded people which was very nurturing as well as many people who were much more open to the mystical experiences (for want of a better way to describe it).  Many things spoke to me, many did not.  I was able to explore and become clearer about who I am and who I wanted to be – my confidence continued to grow.

Along the way I was connected up with my cousin, Ruth and her husband, Reg.  Our lives had taken us different places no other reason – then we found ourselves living in the same province.  We eventually hooked up and little did we know the journey we would take together as well as their extended families.  Her husband, Reg who at 44 years of age was diagnosed with lung cancer (stage 4) – he was terminal. He spent most of that year being so sick not from the cancer but the heavy doses of chemotherapy and radiation.  It was not only difficult for them dealing with terminal cancer – being so sick all the time from the treatments - he needed someone to be with him.  She quit work to take care of him.  I started to see the other side of living and dying with cancer.  It was no longer about just surviving the disease it was trying to survive in very practical ways – with very limited finances – how to pay just the basic bills.  So I rallied some of my friends and their friends and we did a fundraiser to at least help ease the burden somewhat for them.

We all believe God connected us up.  I spent a lot of time with both of them over the next year just being to there to offer support, to listen, to keep Reg company so she could get some sleep or run errands.  I also shared with them the importance of saying one’s peace and sharing one’s feelings so there would be no regrets.  His wish was to die at home; however, one day when he almost did he got scared and decided to go to the hospital.  We knew the end was much nearer than ever before.  A voice inside was nagging me so I decided to skip school this one day and take the train to visit him. I am so happy I listened because I was blessed with another amazing experience.   I had the opportunity to spend some alone time with him that day.  He was having an awesome day.  As we sat on his bed facing each other, we engaged in one of the most profound conversations of my life.  He shared with me how peaceful he felt and how connected he was to God. (this was from a person who had no connection until his illness)   Being the curious person that I am, I asked if he was sensing or seeing anything.  He told me his Dad was lying right next to him on the bed.  At the end of it we thanked each other for such a beautiful experience. I asked him to send me messages once in awhile from heaven.  He said yes, half joking and with a little sarcasm – “I will send them to you on pink paper”.  Me being me I later bought a stack of pink paper!!

The next day Reg died around noon with his Mom sitting on one side of the bed holding his hand and his wife on the other. Other family and friends stood around his bed.  I said a few prayers over him as he slowly slipped away.  It was quiet, peaceful, breathless, beautiful, deeply sad yet so sacred and so special at the same time.  As he slowly took his last breath, a tear trickled out from the corner of his eye.

I will treasure my experience with Reg, Ruth and their families always.  It was an absolute honor to be and share in such a sacred and intimate time in their lives – it is truly a gift full of many blessings.  It is also a great comfort knowing I was able to help ease the journey somewhat for them and they knew they were not alone.  I truly believe together we were able to make it a very special experience for everyone especially Reg in the midst of all the sadness and heartbreak.  I organized a ceremony to celebrate and honor his life. We shared many laughs, many tears and got to share parts of ourselves most rarely get to see or hear.  That to me is soul to soul connections.  A few months later we took the journey back to Reg’s hometown to join his family and community in saying our final goodbyes and bury him with his Dad.

About a year and half later, I got a call one Thursday morning from Ruth saying her Mom was dying and was not expected to make it through the day.  She did though.  I spent some time on the phone that day before I left supporting and guiding them.  I thought by the time I got there she will have died.  I went home not just because she was my aunt, something was pulling me and felt I could be off some help.  She lived 2 days longer than the doctors said she would.  I was able to support and encourage her family to be around her as she was slipping away.  I will never forget that powerful image as she lay in her bed surrounded by so many of her loved ones.  We prayed, said how proud we were off her and how much she would be missed as we helped carry her on to be with her great love, GOD.

It doesn’t matter what words, if any, you use when saying good-bye to a loved one.  I believe is a very important part of the process for everyone especially the person dying. Even if they are unconscious we can still whisper in their ear to let the person know they are loved and won’t be forgotten.  It is also good I find to let them know you will be okay.

Through the course of those 12 hours in the hospital with everyone – I was able to see them and their strength.  They got to see what they were capable off.  Even though they were in awe of me and what I could do and say – I kept bringing back to them as well how courageous they all were.  Many would just not show up or show up then leave instead of stepping into their fear and being there for the person who is dying.

They knew it was about their loved one – supporting her until the end and beyond.  For me as a witness to it all – there are few words to describe it – the beauty yet sadness, the joy, the love – the purity of who they were as a family really showed through and all else fell away for a moment in time.

We celebrated and honored her life with a good old Irish wake.  During a ceremony I did before the traditional mass and burial, I thanked the family on behalf of Aunt Jose for their dedication and love.  During her final days – in the midst of being scared and not wanting her to go – you were able to move beyond it all and be there for her.  I know it is a memory she treasured as she journeyed to be with God. You held her tight in your arms and hearts at the same time you let her go.  Today is really the beginning of your grief as you take another step to let go of her physically.  Please remember and take the time to grieve each in your own time and your own way.  It is okay to cry, to be sad, even angry. My wish for you is that one day the tears you shed will be tears of joy as you remember all the beautiful times you have shared together.  I truly honor all your courage over the last days.  I thank you all on behalf of Aunt Jose for all your love and support. Embrace and live your best life and remember she is only a twinkle away.

Between the spiritual journey I was on, and being around death, I was reminded always of how precious and short life truly is.  So I would seize the opportunities to spend time with my family, especially my Mom, whenever I could.  About a year or so before she died she was diagnosed with crohn’s colitis.  This made what turned out to be her last year with us very challenging at times.  She had been living with osteoporosis for many years and suffered quietly because there were too many side effects from pain medication.  I spent a lot of time with her that year.  We had a wonderful party with family and very close friends to celebrate her 80th birthday.   At the end of her life we were so glad we had done that because she died just a few months shy of her next one.

I spent a couple of weeks with Mom in September 2005 so my sisters could get a break.  Then I spent a few extra days with her after my aunt’s funeral in October.  She was doing good – no changes from other visits.  Yes she was a little weaker but nothing to be overly concerned about.  She spent a lot of time sitting or lying on her bed reading, saying her prayers and watching her favorite TV shows.  I would join her at times just to be with her.  Sometimes I would read my own book or have a nap alongside her.  Other times we would watch our favorite soap opera together and shows like Jeopardy and Price is Right that she absolutely loved. It was so wonderful just being in the same room with her.  Little did I know these would become very, very precious memories for me.

My husband and I went home again for Christmas mainly to spend time with his family. (I had spent the previous Christmas with my family.)   They were having a family reunion and a celebration of his parents’ 50th anniversary.  What a shock we got when we dropped by to see Mom before going on to his parents.  She looked so frail as she sat on her bed – like oh my God what happened to my Mom - in less than 2 months.  She reached out her arms as we walked through the door.  Tears started to flow gently from her eyes – she wanted a hug.  I was surprised by this outburst of emotion because this was so unlike her.  In my life up to that point I had probably only seen her cry a few times.  She always did her best to hold everything in and everything together.  I knew then something had changed yet wasn’t sure what.  So I decided to spend the night with her.  My husband encouraged me to stay an extra week after the holidays which I did.  During that time I continued to notice she was becoming weaker, she was out of breath just walking a few feet to the bathroom.  I thought maybe she had developed congestive heart failure so we asked her doctor to come by.  He did and said no her heart was fine.  Then I got on the phone to family and friends to share my observations and encouraged them to come visit her if they needed.  I truly felt time was running out.  And sure enough a few days later we rushed her to hospital.  She had reached a point where she needed two of us to help her to the bathroom.  This was a Monday night and by noon on Thursday she died.  One of my sisters and I had a strong sense of what was happening – we had seen it with our Dad – once again it was looking very familiar.  Thank God over the past year or so I had conversations with Mom about her wishes so we were all on the same page.  They did discover through X-ray that she had a tumor on one of her lungs.  As much as I questioned the necessity of doing this, we were so glad in the end.  We knew what else was going on and were able to give her better care.  For example because of where the tumor was and she was so tiny it was very uncomfortably for her to lie on the left side    We found out she had the beginning stages of lung cancer.

There were some challenges with the doctors and getting her palliative care treatment.   First she needed to be assessed and the palliative care ward was in a different area of town.  I totally believe in bringing palliative care to whenever the patient is so I was determined to do that for our mother.  We finally did through a few hiccups.   She had told us many times since Dad had died that she wanted nothing heroic just to be kept comfortable and free of pain.  We felt she had suffered enough in her life and now for once she did not have to worry about the side effects of medicine.  We just wanted the doctors to give her something for the pain.  The rest was between her and the faith she had in God.  It would take whatever time was needed.  We just had to be there to support her on that journey.  She died with most of us by her side.  As for the rest of the family and friends she knew they were all near and far supporting and loving her.  She had told me months before “I am ready when the time comes”.  So we all knew that and supported her wishes.

We celebrated and honored Mom’s life like many others – good old Irish wake and a Christian burial.  We also held a ceremony to honor her as a mother, wife, grandmother, daughter, sister and friend.  On her first day in the funeral home we realized it would have been her and Dad’s 50th anniversary so I decided we would honor that by us doing a waltz in their memory.  They loved to dance and they passed that love on to us.

I have to say it is an absolute honor and gift to be able to walk this journey with someone you love.  There hasn’t been much to grieve other than missing her at times.  I feel because I had spent a lot of time with her, asked some of the tough questions that needed to be asked and so with no regrets walked the journey of dying and death with her.  What more could I ask for.  I have no doubt she is resting in peace and no longer in pain.  She is happy.

Within about two years of Reg and her mother dying, I got a call one day that Ruth was very sick in hospital and it did not look good.  I knew she had been sick because we had talked a few times - she had a very bad back and was spending a lot of time in bed.  So my husband and I went to visit her that following Sunday afternoon.  I knew when I saw her it wasn’t good. She found out she had cancer throughout. There was absolutely nothing they could do other than keep her comfortable.  She did have a few blood transfusions that helped her feel better each time for a few days.  However it gave everyone a little time to spend together.  Another huge shock for all of us – it was only three weeks from diagnosis to her death at 54 years of age.  A lot of her family came to visit.  She was in absolute top notch spirits.  She did not want to talk about anything to do with cancer, dying etc.  No she would say always – tomorrow.  It was difficult at times because we needed some basic answers on a few things as well we wanted to see/hear what she may be experiencing.  Ruth had a very strong belief in God at the same time an even stronger belief in the spirit world.

For awhile we thought she was in denial – then we realized we just had to accept – this is how she wanted it to be.  We just needed to go with the flow.  She let us know when she needed company and when she needed to be alone which was so not like her.  She was so alert and so clear – did not want to sleep much if at all.   She got to see and spend time with two of her children before she died.  Another tragic and sad story yet I was very blessed once again to share the journey with everyone and to help in whatever I could.

For me, I was getting to know and have a beautiful relationship with relatives I would or could never have imagined in all my life.  The love that has blossomed from it all is immeasurable.  We all knew and felt something else was at play here.  This just wasn’t because we were related.  I believe spiritually God brought us together because we were open to the experience of what he had to offer us.  I know he held my hand as he had times before to help these guys through another devastating time in their lives – to ease the burden.  Also, to share a love most people never get to experience, to be vulnerable with each other and be open to what was unfolding.

Once again family and friends came together to celebrate and remember Ruth’s life.  She was cremated and we held a beautiful ceremony in a chapel near where she lived.  Once again I got to write and read the eulogy on behalf of all the family to mark and honor her life.  Then afterwards a large group of us gathered at a pub nearby to continue our celebration of her through food, drinks, sharing stories, songs and poems.  I knew that would have made her very happy since she loved to laugh, have a drink and be merry.  It was a great tribute and way to honor her life.  Then the following summer the plan was to bring her ashes back to our hometown for burial.

Like I said earlier in the story when Ruth, Reg and I connected up where it would take us  who knew.  Little did any of us know after all of this I would get another phone call from Ruth’s daughter to say her brother, Shawn was dying in a hospice in Vancouver. Yes we knew he been living with AIDS for years, however, it still shocked me.  I can only imagine what the family felt to receive this news so soon after their mom’s death.  This was May 2007.  We did not even know if he knew about that because the family hadn’t been in touch for a long time and hadn’t seen each other in 18 years. He had struggled with drug and alcohol addictions most of his young life.  I struggled with whether to go or not – didn’t want to overstep any boundaries yet at the same time this nagging feeling kept saying you got to go.  You need to at least be there in the city just in case you can be of some help.  I knew she would never ask for help.  Also, even though her Mom was gone I figured she would come back to haunt me if I didn’t go to help support them through this!!!!  So with my husband’s support I decided to go. Thank God some very dear friends of mine were very generous and opened their home and hearts to us.  They took amazing care of us preparing delicious meals at night for us to sit, reflect and share our day.   Sometimes it was a much needed distraction from the sadness of the reality of what was happening and of course a place to get some rest.

I arrived at the hospice midmorning on the Friday.  My cousin, her boyfriend and her Dad had arrived just a few hours before after a long drive from another province.  Once again I was deeply moved and honored to be in such a sacred and intimate place in people’s lives. To witness how love takes over and nothing else mattered other than reuniting, sharing and loving being together for whatever time was left.  To be available to help facilitate the process is such a gift to receive.   Most importantly the family being together sharing memories – catching up on so much – so much to say, give and receive not knowing how long they had.   His Dad was able to find out from his son that God, the bible and traditional prayer was very important to him.  His Dad is a very strong Christian so he was able to use that in a way that helped nurture his son’s needs and wishes for his final journey.  At the same time the father’s heart and soul were nurtured knowing his child was being loved and cared for by God. Even in the midst of the devastation of loosing his son, he held on to his faith and shared it with us.  And something no parent ever expects to have to do or witness – the dying and death of a child you gave life to – always thinking you will die before them.  I believe it is the most difficult thing to experience in one’s life –burying your own child.   Many times we all prayed together – they were beautiful moments of sharing and being.  Shawn lay there in his bed and soaked up the prayers and blessings bestowed upon him.  I have to say I have difficulty to find the words to put on paper just how incredibly moving, peaceful and beautiful it was being in the presence of Shawn dying.  I wish I could speak it to all of you personally to try and capture the essence of those last moments with him.

His wish was to be cremated and brought back to our hometown for burial.  So that following summer, family traveled from west to east to bring him home and at the same time we traveled from Ontario to bring Ruth home.  As one can imagine it was a deeply moving and emotional time for everyone.  We united them together in death as they could not be in life and held a beautiful ceremony for them before the final Mass to bury them together in their final resting place.

Yes I know I use the word beautiful and other like words a lot – please keep in mind I see it very differently than most – also because I am not immediate family it is a little easier for me. Having said that I must say for the most part I was able to be fully present to my Mom and yet be connected to the sadness.   It is a very tragic and sad time for families when a loved one is dying yet what I bring to people when I can is holding the sacredness of the space.  Also encouraging and supporting a family in the reality of what is happening and focusing on what is the most important at this moment – at this time because it is all we have.  I create a space for healing to happen if needed.   Also it is not about us at this point – first and foremost it is about our loved one who is dying.

Going through the dying process with someone and their families is very sad and painful and rightly so.  We are learning in the midst of it to let them go.  I have no doubt through my experiences having people there to guide and support everyone especially the person who is dying makes a difference.  Just like women giving birth – it is so much better for them having the support around – the pain is still there – the unknown is there especially for first time moms.  We only get one time with – we don’t get a next time to make it better.  However, what we can do is take from each experience what you learned.  Also reflect on what you wished you could have done and add it to the next.  At the end of it all the most important thing is being loving, compassionate and present.  It is truly the smallest of things that make such a difference like making someone a cup of tea or holding a person’s hand.

We don’t have a choice about dying – it will happen to all of us – that is truly our reality.  However, a lot of us can have a choice about our care – hospice palliative care is one of them.  I believe as we become more comfortable with this topic we can embrace living more fully.