Joan here..."Tough Day"

Well...what can I say....
Lots of things happening...
My first wedding anniversary without Rick came and went over the weekend without my sweetheart...I kept telling him he better not die on our anniversary. You know Rick he always wanted to please. He didn't. He kept asking all of us when he was on his last days....What day is it?

I spent the entire anniversary day in (Rick's) bed in my pj's. I just reflected on us. I tried to sleep the day away. I rec'd a beautiful arrangement from my sister Kathy and Roger. It meant so much to me that someone remembered our day!

Rick's equipment within the next two days will be absolutely gone from our suite....Both our son in laws...Grant and Roger have offered to help pick it up and bring it back. It was wonderful of them to offer...but where I am at right now...I am over sensitive about everything.

My sister Kathy and myself loaded a van full of equipment 9:30 am this am and started returning things. It poured and it poured! Kind of like an omen...not that Rick would miss this stuff but rather it was like the memories tied to this equipment was being removed from my life! As each piece was loaded I was falling apart inside. I thought I was safe till Friday when I thought the truck was coming for the last of the equipment....which the one piece of equipment I clung to so dearly...his bed. I found this am that I needed to return the KCI mattress so that meant I could no longer sleep on the bed tonight. Well, I went into emotional overload....ended up taking wrong turns on the road and on and on it went today.

I delivered equipment and supplies back to the Pinawa Hospital, ALS Society, HSC Rehab, Respirolist Dept. of the HSC. It was like a trip down memory lane meeting all these people, Cheryl, Susan, Diana, Sharon, Brian, Ed, Mic and Karen who where so incredibly wonderful and helpful to Rick in the past couple of years. I drove the good old "beast" downtown Wpg. with all the courage I could muster up.

My sister Kathy and I just dug in and made it happen. We lifted, pulled and pushed.
We have had the most miserable day imaginable with rain and rain and rain pouring down.

Friends of Rick and I...Brian and Jan made sure I made it home okay with the "Beast". They actually drove from Wpg to Whitemouth and the back again in the torrential rains.

Our suite is almost visibly devoid of anything about Rick. The equipment is gone. I keep reminding myself that the equipment was NOT Rick...just the memories. The room echos with emptiness...I have the large pic of Rick hanging in the suite and a few pics of him and I on the desk.....our favorite wall hangings.... but there isn't a lot visibly left of him......It is almost unbearable at times! When will this nightmare ever stop????

Joan here..."Two weeks today"

It is two weeks to the day since my beloved Ricki has passed. It seems like a lifetime ago on one hand and only minutes on the other. So much has happened since he is gone and I desperately would love to share our morning kiss and sit down and have our morning coffee together. I can't do that so I blow him a kiss in our special meeting place and then sit down and have my coffee and talk anyways.

Within 4 months, Ken, Brian & Rick have all passed away from ALS. Bet they are not sitting in wheelchairs right now!!!!

Ironic, that today this Friday, two weeks to the day that Rick passed, that the transport truck came to pick up Rick's wheelchair. Thank you to SMD (Society For Manitobans with Disabilities) for the basic power chair, The ALS Society of MB for the specialty back and sides, custom tray, Health Science Engineering Dept. for their engineering expertise in the sip & puff, tray for the bipap, switches for the headrest. You all made Rick's life so much more comfortable and gave him a set of legs for the past year! Thank you!!!!!

This is the first major piece of equipment that has left the suite. My heart wrenched with pain as I drove it out and onto the platform of the semi. I had to show the driver how to operate the chair and it just crushed my soul as I began remembering how Rick taught me how to drive the chair and turn it off and on and all the little tricks I needed to know because of the switch on the head rest. The memories all came flooding back. How I just about smashed his foot because I forgot to turn the speed down at first. Rick so patiently taught me. Looking at it at this moment he probably thought he better teach me right otherwise he was in for the ride of his life and would lose a foot somewhere down the road!

The fellow from the transfer shared how he knew of a young man who within this past year passed away from ALS also. Every time, I mention ALS someone has a story of someone they knew who had it or has it. According to the stats that should be impossible. There are far more people out there than one knows.

When the door of the semi closed and the semi started driving away. Once again, I stood on the driveway waving goodbye and crying as another part of our tangible life with all its memories....was leaving.

Thank you to all who continue to send in support to the ALS Society. I am amazed at the memorial donations coming in. With each donation I receive a card acknowledging the person who donated. It brings such joy to my heart that with this money someday a family will not have to go through what we have! Thank you!!!!

Joan here..."Day No. 13"

It has been many days since I have actually been alone in our suite. The very first time that I was alone, which was a couple of days ago, all the flood gates opened up and I just continually started talking and crying to my Ricki. It's like I am praying to God one minute and then to Rick the other. Then I think..."Well Rick is with God right now"....so I don't get too hard on myself on the dynamics of that.

I have started the sorting of the equipment with our occupational therapist Louise as of yesterday. She has been an absolute wonder in helping us correctly fit Rick to his equipment, ordering the right equipment and helping us in every other way imaginable. It is so bittersweet.

I am not crying as much but I do have times when I think about Rick and everything gets stirred up. When working with any of his equipment after awhile all of a sudden I feel an absolute energy drain. I get exhausted and have to stop. I think it is the emotion of grief or sorrow that is wanting my attention. So I stop and just rest for a bit and allow myself to think about the memories attached to that equipment.

Yesterday, Louise had to strip the power wheel chair as 4 different organizations had parts on it. As she stripped the parts all the memories came flooding in. The memory of the first day they unloaded the big, black, heavy, cold chair off the semi in Dec. 2008. I was horrified when I first saw it as Rick had just been in the manual wheel chair where he could push himself around and now this big black ugly monster was in front of us! It meant our new reality would be that he would for sure now never ever walk again. I was so angry at the time that I gave that chair an extra kick as was my ritual to each piece of new equipment when it arrived.

Low and behold...within a week or so after getting the chair...Rick was sitting in the chair and appreciating the fact he had power control and not having to expend energy to push himself. It was so much easier for him once he started using it...it was so fancy..it had a head rest, it could tilt and spin around and go fast! Before long we both embraced the freedom that it gave him. From that time on the memories we shared while he sat or napped in that chair became good ones. So I can't even imagine how I will feel when they pick it up on Friday. That chair was like a big huge favorite lounger that most of us have in our living rooms and hard to let go because of all the warm fuzzy comfort memories attached to it.

I still have emails, condolences, and cards coming in. I look forward to reading them each day as I have my ritual morning coffee. It is so hard to believe that my Rick is not here to share the events of the past days and plan our days together. I tell myself he is having coffee with me in the spirit.

When driving down the long barren road from Wpg to Elma yesterday I noticed how the trees solidly lined both the sides of the never ending highway that lay before me. You couldn't see anything but trees when you looked to the left or right. All you could see is the long winding road with no visible end in sight. That is my life right now. I have family and friends on either side of me and I am on this new road and I don't have any idea what lies ahead for me but I am on it and moving ahead. Not moving fast... but slowly moving in my being!

Joan here..."Day No. 9"

It is the ninth day today since my Ricki has passed. Nine days full of blur and numbness and tears beyond what anyone could imagine.

I started this morning by waking up and looking out the big window to see a big bright beautiful morning sky filled with newness and then with so much sadness as I miss my Ricki so very much. I have not taken down his hospital bed yet so every night I have found comfort in just sleeping where he slept. Covering myself with his blanket. Laying my head on his special boomerang pillow. Smelling his scent.

As I lay feeling the circulating mattress moving under me I lay there in one spot trying to imagine how Rick must of felt laying there in one spot for hours at a time not moving anything but his head unless one of us did it for him. All he could move was his head from side to side. He could no longer even move it forward or backward. I just start crying as I relive that image in my mind. I picture him being hoyered, rolled over,washed, being dressed, teeth being brushed, sipping on the little bit of liquid that he would even drink and a thousand other images and memories that are being played over and over again in my mind.

How helpless he had become at the end of this disease.Then I think about how I could have and should have done even more for him while he was alive. Thoughts of I should have hugged him more... should have...chould have...and the list goes on and on. I am sure that this is all the standard torment that comes to a person after losing your loved one.

Rick's uncle Keith flew down here on the day of Rick's viewing and stayed with me until yesterday morning. Rick had phoned him a day before he passed asking him to be the master of ceremony and read his Eulogy. Uncle Keith was my constant in the fiercest storm of my life. He steadily and carefully each day attacked all the demanding decisions that come with the planning of a funeral. We laboured over each detail. During the time he was here I got to pour out my grief, frustrations, and anger and ask him many questions about "are these feelings normal?" out to him daily. I mean pour not just sprinkle!!!

He himself lost his wife to ALS. Aunt Christine was our aunt by marriage so the disease was not a inherited one. Just the odds that he married someone who would develop ALS. She passed just over a year ago so Uncle Keith knew the walk only to well. He is still dealing with his own grief of losing the love of his life. Rick's wisdom of choosing Uncle Keith was, as I experienced this past week , more than for someone to take care of being his master of ceremonies etc. Rick in his wisdom knew that Uncle Keith would provide me with a much needed daily comfort of strong shoulders, soft spoken gentleman, and most important at the time he is experientially wise.

It would take pages and pages to really write down and articulate all the feelings and thoughts that I have been going through up to now. I think God has placed in our bodies a special way of building some type hormone or inner chemical release to help with such a time as this. I have felt quiet gentle tears rolling down my cheeks, I have felt groans of anguish and sobs gush up from my inner most being as I would release the sorrow and pain of the moment. Then I also have felt where a numbness would take over as if my emotions were dead and I would draw back from what was happening and go deep inside of myself. Sometime I can be around lots of people and then the next minute I have to go by myself to get centered again. I could never have imagined these kinds of feelings. They just come in waves and in no particular time or order. I try to let them just happen and let myself follow where they are leading me right now.

No matter who is around me when I sense I need to be alone I just go and take a few minutes to be alone with my thoughts. I usually pick the tangible spot to go to where Rick said he would be in spirit for me. I have found so much comfort in knowing that he picked the first spot right here in our back yard. He gave me another one when the time comes when I will no longer live here.

Right now, it is like God's very own creations are a very special gift to me and are working together to bring comfort and healing... the winds, the birds especially the hummingbirds (Rick's favorite), the sun rays, the gentle breeze will suddenly appear out of no where and surround me at that moment of desperation that I cry out to God to be with Rick. I miss him so much!

A woman will understand the pain when I refer to the "pulling down or bearing down from deep within" one feels when going into birth labour. That is how one of the pains feel when the wave of mourning comes over me and I have to go alone to release it. I am giving birth to a new life and reality of not having my Ricki at my side as I once knew it.

Yes, I know my Ricki will live in my heart forever and yes I will some day be with my Ricki in a very new way but right now that doesn't always bring me comfort. There is such a letting go of how our life was together here on earth, the dreams, our future of getting older together, sharing those morning coffees together and a million other things.

From the moment Ricki passed away until this very day I have been surrounded by loving caring family and friends. My sisters have been taking turns being here with me. Right now my sister from Abbottsford is here helping me. Because of all the people coming in and out before and after Rick's viewing and funeral there has been so much clean up and organizing. So many people brought us food and beautiful flowers. I can't focus longer than a couple of minutes at a time to really get anything done.

I will try and muster up the courage to write about my husband's viewing and funeral as time goes by. Right now I am living my day minute by minute never knowing if the next thought will bring me just a tiny ripple or a big wave of emotion to flood over me. Everyone asks how are you doing? I am not sure how to answer that. The one thing that has kept me from being swept into sea is my belief in the Love of God and everlasting life and I WILL be with Ricki once again...Together Forever!

Joan here..."A time of Rejoicing for Rickie...Mourning for me"

As all of you know, Rick is the love of my life....as Katie put it "The other half of my heart!".
It hurts really really bad and I feel like I will never be myself again. I miss him so badly. Words can't describe the pain in my heart right now. I could fall down to the ground with the pain and anguish of my heart in crying out for him!

These past few days are days of shock, tears, disbelief of what has happened and the mad rush to get so much done. My mind is having to focus on getting through the funeral now and I only have minutes at a time to focus on my pain and loss. I am afraid when next week is over I will enter another faze of even greater mourning as I will have so much more time. We have been so blessed with all the flowers, food, cards, emails and especially all the hugs by people showing us their love and sharing their loss also.

On our way out the door last night to the funeral home we were greeted by Kirstine of the Whitemouth Hotel giving us some fresh hot pizzas for supper! Not only were the pizzas hot to our bellies but they brought the warmth of their love to our hearts. We have been blessed with family and friends organizing and bringing over food and beverages so as people have been coming over here I don't have to worry about any concern for these things.

I know Rick is over his pain and suffering...no more having to be handled by everyone...having to ask for even the smallest thing because he could no longer do anything but speak. This was one of his first concerns after diagnosis that he would continue to have the gift of speech. God surely heard his prayer and made a way for him to communicate with us until the very last hours where the meds, no muscles to breath in and out air, shear exhaustion made it almost impossible for us to hear his soft voice speaking. Our Rick with our children, his mom and dad and brother Garth surrounded him as he slipped peacefully into eternity. We are all relieved that he is over his pain and suffering and is now running, walking and eating with the angels on high. For this we are so very happy for him and Rejoice for Rick!

For myself and for all those who loved and cherished Rick it is a different story.... we mourn his passing. I will have to learn how to walk in the strength, power and trust in the Lord to heal my mourning and broken heart. Right now everything is so raw inside. I have cried and cried and just when I think there is no possible way that there is even a drop of water left in my body something or someone says or does something or a memory floods in or I see something of Rick's and the tears come again like waterfalls.

No one can ever be prepared for loosing their loved one, their soul mate. I had lots of time to think of losing Rick in the last 2 1/2 years but could never really allow my self to go there in my mind more than a few seconds. I can no longer run from it it is right here in my face every second that has gone by...he no longer lives in a physical body...where I can touch, speak and hold him...he lives in the spirit now and I feel him all around me even though I can't see him....I can hear his voice talking to me at times when I get overcome with grief.

His pet name that he used for me when it was just him and me was "babette". He told me not to worry when he realized he had but just hours to live. He did not have a chance to finish so much of what we talked about dealing with. He really believed he still had a few more weeks.
When the reality that he was going in a matter hours he started talking to me about my care, my future,my concern for unfinished things, my sorrow of not having him, my, my, my. He kept telling me "do not worry babette it will all work out". He started to remind me of where certain things were...what to do.......he went on and on to me about ME! His love and concern for all of us was amazing. He died true to his life...thinking of others first, kind, gentle, understanding and never projecting himself ahead of others. It was always "We" with Rick when he spoke...he never would just say "I". He always shared the glory... he was a team player.

My head and heart are so full of the love he had for me. As he laid on the bed dieing I kept thinking "what about him?" I could not help him on his journey through this valley of death as his body began shutting down. I was so thankful for the meds to take away any pain that were available. We had the presence of an earth angel named Cheryl from Palliative Care sit and walk with all of us until the end. I felt so helpless in helping him in his last hours of life here on the earth. The only thing that comforts me is knowing when he asked me not to leave him...I told him I would only leave him if I had to go for a "P". He laughed. I held his hand, stroked his face, kissed him, and hugged him until he was no longer with us. All the while I was devastated and could not believe these were my last hours and precious minutes with my beloved Ricki.

After his passing Val, Garth and I brushed his hair, cleaned him up and while he laid there waiting for the Funeral Home to come we all kept surrounding him with love and never leaving him alone as I had promised him.

I can't even convey to you the pain as I saw them lift my sweetheart onto the gurney and put him in a bag and roll him away! We all stood there hearts breaking and tears flowing and watched. I told the funeral attendants I was not leaving his side and I just had to stay beside him till the very last minute that I could. I walked along side of them pushing the gurney and told them to take good care of him because they where handling a "Prince". I stood by my Ricki until they slid him into the back of the black car. When they closed the back of the door with my precious Ricki in there and began to drive away I waved him goodbye and blew him a kiss until I would meet with him again and away they took him. I stood there sobbing and so full of grief that there went the greatest husband, lover and friend that I could have ever asked for.

I know we will always be together forever but it just won't be the way I knew it here on earth. I no longer will experience his voice, his touch, his hugs, his kisses, his encouraging and comforting ways.That has passed now. I have to let that life die but forever remember. I will be joined with Ricki once again in eternity in a new way! Where there will be no bipap masks in the way of our kisses. He will be able to dance with me once again. He made me a promise that we would dance together on the "sea of glass" and we would be Together Forever in eternity!

Funeral Details

Time: 2:00pm
Where: Whitemouth Community Centre, Whitemouth, MB
When: Friday August 20th, 2010
In Lieu of Flowers you can make a donation to the
ALS Society of MB
http://www.als.ca/events/mysite.aspx?fid=4004