Father's Day is a day for us to celebrate everyday but I take the official calendar Father's Day just as a gentle reminder for all of us to give thanks to our Father. First above all, to give thanks to our Heavenly Father and then of course to our earthly Father!
I no longer have my father living. He passed away within 2 weeks of being diagnosed with cancer 18 years ago but it all seems like yesterday. Every year Rick and I go to visit his grave and sit there and have a beer (my dad's favorite) and talk all about him. Rick never met him in person but says he really feels like he knows him because of all our talks about him.
I can only remember a bunch of the little things. Like the year when he won the raffle at my school Christmas concert...which means he did come to one of them. The year he told me if I ranked first in my class after moving to a new school only months earlier that I would get a bike...which I did get one by the way. Who says bribery doesn't work!
I remember him taking me alone to look at the new house we were moving to in Winnipeg and peeking through the window to show me my new room.
I don't remember him ever yelling at me or being mean to me when I did wrong.
I remember him making home made fries each Sunday for all of us kids. He would let us eat till we couldn't eat anymore of them! He would get really creative and make us bq and ketchup fries to our delight.
I remember the year he and mom came back from their trip to Hawaii. We must of watched the slides they took of their trip a zillion times. He would put on his Hawaiian shirt and then start the projector. He said he figured Hawaii was the closest thing to heaven here on earth!
I had the privilege of working with him in his business for a few years when I was older and had the opportunity to see how incredibly smart he was at what he did.
I always have had the impression with me that he felt he needed to take care of his parents. My dad was one of 16 children in his family.
My dad could fix anything. He taught me never to force or jam things. He said if a man built the thing then a man could fix it!
He taught me to clean up and put things away after use.
When donating to a cause he would never take a receipt. He said giving was giving!
Many people owed him money till the day he died but I never heard him speak evil of them.
Most of my memories of my dad, when I think of it, were when I was younger. I guess when I got older I was too busy with my own children and work.
To me, my dad was one of the smartest men in the world. He always made me feel like I was smart also and that I could do anything I wanted to do.
He never told me that he was proud of me but I always knew he was.
He always treated me like a lady and never talked down to me. He made me feel safe.
He was so proud when his first grandchild was born that he insisted that we named him Jacob Robert instead of the intended Robert Jacob! It must of taken me months after naming our first born Jacob to actually use that old name on such a little baby! Hince to this day my family still tries to call him Jakey...I am so very proud and happy that we have a son named after his grandfather (Jacob) and great grandfather (Robert)!
Reality is I know that my dad was not perfect...but he was perfect for me! I really love him and miss him very much!
I so wish Dad you could have met Rick. Rick's kindness and gentleness as a man has always reminded me of you! Where I go... dad you go ...you will always live in my heart forever!!!
Sunday, June 21, 2009
Wednesday, June 17, 2009
Joan here..."The begining of Home Care in our place"
Well a few updates...using the DABS are the run of the mill thing around here now. :(
Funny how quickly we move to routine us humans! I still have to disassociate myself mentally and I am sure that is what Rick does also to survive as we go through the process. So we grieve.
We do have home care coming in, 3 half hours a week , to do Rick's range of motion exercises as a start. This helps his joints. His feet swell up so bad during the day from sitting in his chair. He does try and lift up his legs and lays on the bed for a change but they still swell up some.
It is unreal how having another person in our place is such a infringement on our privacy. This is the initial step towards this becoming normal for us and it is so scary. Soon our time will not be ours alone and we both do not like that at all. We know that we will just have to suck it up in order for Rick to get all the care he will need. So we grieve the loss of our privacy.
I just had a birthday this past week and it was a horrible one for me this year. There is so much emotion running around inside of me as this could be my last one where Rick can talk or even eat. I was incredibly disappointed with the way Rick was so passive about it all. To me it was such a huge big deal. I am a dreamer and like to dream big. I want everyone to be invited etc. He forgot to even invite my best friends, never mind my other couple of sisters, cousins, aunts and uncles and nieces and nephews who are close to us. It has been hard to know if it was just "the man thing" or in fact an ALS thing! hmmmmmm...
Just because your man is dying doesn't mean that he will be sensitive or with it when it comes to knowing what is important to his woman. I really had to grieve the loss of probably not having another birthday with him being involved and being able to celebrate with him and everyone together. It is so hard to explain until it happens to you. It was so important to me that he remembered all the things that I have ever talked to him about that were important to me.
In my selfish own way...I figured he had lots of time to think about it all while I was busy showering him, making meals, making beds, dressing him, undressing him, hoyering him, loading and unloading him in the van and etc. And YES, I have been feeling really sorry for myself over it all!
On a different note...I did discover something interesting tonight. When driving back from the city there was a deer in the middle of the road that I actually missed! The deer do not like the sound of "the beast's" horn! So I merrily honked that horn as I drove in the black of the night. There were many a deer in the ditches but not one standing in the middle of the road!
Funny how quickly we move to routine us humans! I still have to disassociate myself mentally and I am sure that is what Rick does also to survive as we go through the process. So we grieve.
We do have home care coming in, 3 half hours a week , to do Rick's range of motion exercises as a start. This helps his joints. His feet swell up so bad during the day from sitting in his chair. He does try and lift up his legs and lays on the bed for a change but they still swell up some.
It is unreal how having another person in our place is such a infringement on our privacy. This is the initial step towards this becoming normal for us and it is so scary. Soon our time will not be ours alone and we both do not like that at all. We know that we will just have to suck it up in order for Rick to get all the care he will need. So we grieve the loss of our privacy.
I just had a birthday this past week and it was a horrible one for me this year. There is so much emotion running around inside of me as this could be my last one where Rick can talk or even eat. I was incredibly disappointed with the way Rick was so passive about it all. To me it was such a huge big deal. I am a dreamer and like to dream big. I want everyone to be invited etc. He forgot to even invite my best friends, never mind my other couple of sisters, cousins, aunts and uncles and nieces and nephews who are close to us. It has been hard to know if it was just "the man thing" or in fact an ALS thing! hmmmmmm...
Just because your man is dying doesn't mean that he will be sensitive or with it when it comes to knowing what is important to his woman. I really had to grieve the loss of probably not having another birthday with him being involved and being able to celebrate with him and everyone together. It is so hard to explain until it happens to you. It was so important to me that he remembered all the things that I have ever talked to him about that were important to me.
In my selfish own way...I figured he had lots of time to think about it all while I was busy showering him, making meals, making beds, dressing him, undressing him, hoyering him, loading and unloading him in the van and etc. And YES, I have been feeling really sorry for myself over it all!
On a different note...I did discover something interesting tonight. When driving back from the city there was a deer in the middle of the road that I actually missed! The deer do not like the sound of "the beast's" horn! So I merrily honked that horn as I drove in the black of the night. There were many a deer in the ditches but not one standing in the middle of the road!
Monday, June 8, 2009
Joan here...Disposable Absorbent Briefs??? a DAB
We did our first Winnipeg ALS Walk this weekend. We were so amazed at the amount of people that were there! In order for us to make it there on time we ended up staying at the Brummitt -Feasby House (an ALS hospice house) on Kirby St. in Wpg. It was a very emotional time for us. The staff were absolutely helpful and understanding with us.
I was determined to still take care of Rick on my own so I had to learn how to operate a few pieces of equipment. It was so stressful as here we have our own routine down and there we were like fish out of water!!! I ended up just getting a couple of hours of sleep that night.
We met some other residents who were further along the ALS journey than Rick and that was so hard for both of us. We know that that is what is down the road for him and it is almost unimaginable! It really made us think once again about doing all that we can do while we can!
We had a wonderful surprise today. A gentleman dropped off some money that was raised for the ALS Society by one of the local businesses who held a fund raising car wash. Wow!
I just got finished tucking Rick into bed for the night. It all seems so unreal! I still can't believe that we are at a spot where I put on a disposable absorbent brief (DAB...my own coined word)How's that for not using the word diaper?...Rick hates that word!!! and his pj's for him. My emotions swing from disbelief, sadness to laughing and giggling as I still can't seem to line the DAB right. It is one thing to squiggle a baby around but wow...trying doing that to a 158 pounder!
We have had some interesting looking end results! I even had to resort to using masking tape as I did and undid the tabs so often trying to get everthing just right! Rick says "at least we haven't had to use Duct tape yet!" There was a point in the process where he was beginning to think he may have gangrene by morning as I had it way to tight!!!.
This all makes it easier and safer for Rick not to try and sit up on the edge of the bed in the middle of the night. You could say another big big big bridge has been crossed! I forgot to mention that I was actually on the phone talking while doing this! Talk about multi tasking!!!!
I was determined to still take care of Rick on my own so I had to learn how to operate a few pieces of equipment. It was so stressful as here we have our own routine down and there we were like fish out of water!!! I ended up just getting a couple of hours of sleep that night.
We met some other residents who were further along the ALS journey than Rick and that was so hard for both of us. We know that that is what is down the road for him and it is almost unimaginable! It really made us think once again about doing all that we can do while we can!
We had a wonderful surprise today. A gentleman dropped off some money that was raised for the ALS Society by one of the local businesses who held a fund raising car wash. Wow!
I just got finished tucking Rick into bed for the night. It all seems so unreal! I still can't believe that we are at a spot where I put on a disposable absorbent brief (DAB...my own coined word)How's that for not using the word diaper?...Rick hates that word!!! and his pj's for him. My emotions swing from disbelief, sadness to laughing and giggling as I still can't seem to line the DAB right. It is one thing to squiggle a baby around but wow...trying doing that to a 158 pounder!
We have had some interesting looking end results! I even had to resort to using masking tape as I did and undid the tabs so often trying to get everthing just right! Rick says "at least we haven't had to use Duct tape yet!" There was a point in the process where he was beginning to think he may have gangrene by morning as I had it way to tight!!!.
This all makes it easier and safer for Rick not to try and sit up on the edge of the bed in the middle of the night. You could say another big big big bridge has been crossed! I forgot to mention that I was actually on the phone talking while doing this! Talk about multi tasking!!!!
Wednesday, June 3, 2009
Rick here - "Well...It all Depends!!"
Well - some things happen you never thought would! This is one of them....
Joan has a good explanation of what ALS stands for - A Lot of Shit!!! On that note...
It has been getting harder and harder for me to get sitting up on the side of the bed at nite to have a whiz into my trusty plastic bottle. That coupled with a very real fear about getting the runs when it takes 10 minutes to get onto the commode chair had me thinking about ....wait for it....adult diapers!!
So, rather than wait to have an accident I figured I better get proactive and face my fears.
I asked Joan to pick some up when she was in the city - her description of shopping for Depends with her crazy,funny sisters makes its own story! Guys...just so you know....women seem to have not nearly so much sympathy for this situation as guys do....a few comments along the line of ' so- that happens to us a week a month since the age of 12' really make it hard to feel quite so sorry for yourself - but I am still trying' :)
Anyhow, she got me some and after looking at them for a couple of days I decided the time had come for the big test!
Joan got me strapped in- literally - I had a few beers to 'prime the pump' as well as for some temporary courage, and waited! Now, the mind is a funny thing. Normally in that situation I would have to go pretty fast - I have a notoriously small bladder, especially where beer is concerned, but it was about 6 in the morning before the inevitable happened.
I awoke and realised- this is it! Sooooo - I gave a bit of a squirt to see what would happen, kind of fearing it would run out the side or God knows what....anyhow, all seemed well so managed another little squirt, still no problems, so I let it rip.
Success!!!! No leakage and no ill effects. I must admit that I shed a few tears though, just because I am so PO'ed that this is happening to me, but at the same time I am so thankful that the technology exists to make this as easy as possible!! It must have been hell only a few years ago to deal with this kind of thing!!
Anyways, another bridge crossed, and I survived!
I hear that cheering guys - thanks! And you ladies can quit laughing! The male ego is a fragile thing as you all know ! :)
Joan has a good explanation of what ALS stands for - A Lot of Shit!!! On that note...
It has been getting harder and harder for me to get sitting up on the side of the bed at nite to have a whiz into my trusty plastic bottle. That coupled with a very real fear about getting the runs when it takes 10 minutes to get onto the commode chair had me thinking about ....wait for it....adult diapers!!
So, rather than wait to have an accident I figured I better get proactive and face my fears.
I asked Joan to pick some up when she was in the city - her description of shopping for Depends with her crazy,funny sisters makes its own story! Guys...just so you know....women seem to have not nearly so much sympathy for this situation as guys do....a few comments along the line of ' so- that happens to us a week a month since the age of 12' really make it hard to feel quite so sorry for yourself - but I am still trying' :)
Anyhow, she got me some and after looking at them for a couple of days I decided the time had come for the big test!
Joan got me strapped in- literally - I had a few beers to 'prime the pump' as well as for some temporary courage, and waited! Now, the mind is a funny thing. Normally in that situation I would have to go pretty fast - I have a notoriously small bladder, especially where beer is concerned, but it was about 6 in the morning before the inevitable happened.
I awoke and realised- this is it! Sooooo - I gave a bit of a squirt to see what would happen, kind of fearing it would run out the side or God knows what....anyhow, all seemed well so managed another little squirt, still no problems, so I let it rip.
Success!!!! No leakage and no ill effects. I must admit that I shed a few tears though, just because I am so PO'ed that this is happening to me, but at the same time I am so thankful that the technology exists to make this as easy as possible!! It must have been hell only a few years ago to deal with this kind of thing!!
Anyways, another bridge crossed, and I survived!
I hear that cheering guys - thanks! And you ladies can quit laughing! The male ego is a fragile thing as you all know ! :)
Rick here...It was a shitty week!
Well....last week was a very tough week! The realities of this disease and the tremendous emotional and physical strain of dealing with it are beyond belief! My poor sweetheart pushes herself so very hard to try and keep our life as 'normal' as possible and all the while help me maintain whatever dignity and independence that I can! It breaks my heart!! The strain on both of us - and her in particular- is tremendous!
Despite the fact that I am an incurable optimist, sometimes the shit we are going through just overwhelms me....and I often respond in typical 'guy' fashion by getting quiet, feeling sorry for myself, licking my wounds and as Joan says ' staring into the fire' ....That is a nice way of saying that I 'dial out':) Listen up guys....that is NOT what your (my)woman needs! We (me) need to speak and communicate when going through that stuff, as that is how most of our wives (mine especially) deal with it in their hearts!I know all that stuff but boy, it can be darn hard to do at the time!
Last week we were laying together in the hospital bed on a rainy day, holding each other and crying. We looked out onto the deck and saw the first hummingbird of the year at the feeder....what timing! Joan said God sent him just to cheer you up! We cried some more, then laughed. I thought- if this little bugger can fly 2000 miles and make it - so can we! God indeed sent that little hummer to us that day! It never ceases to amaze us how when we are down and sad that God always reaches out to us...either through people or even little birds!
To top it off the Grade 2/3 teacher stopped off at the house and brought us a calendar the kids made for us....each child painted a page and signed it- they chose a scene to match our decor based on their visit to our place, complete with an inspirational message! There are only 25 students in the class so our month now has only 25 days! lol Anyhow...it was so touching as the drawings showed such care and hope...many more tears were shed...thanks kids!! We could not believe that a teacher would organize and co-ordinate such a gesture...what an educator!!!...these are lucky kids! We have been so overwhelmed by the way we have been 'adopted' by these kids, teachers and by the town itself.
Anyhow....we have made some decisions that we knew needed to be made. We are setting up a meeting with the homecare folks to start getting some help from them. We have already met a few times with the coordinator and they are super! We are also setting up a kind of' volunteer help calendar' for our family and friends who have expressed an interest in helping. My goal is for Joan to have at least a day and a nite away every 2 weeks or so where she does not have to be bearing the physical weight of all she has to do 24/7 This is so hard for us cause we did everything together - our idea of a break was not to be apart but to go away together. The thing is though, she needs a break from ALS, not from me.....I hope :)
We are also going to try and take advantage of the Brummitt -Feasby House in Winnipeg - it is a hospice home run by the ALS Society - and they sometimes have an available room where I will be able to stay and Joan get a bit of a break when we do things in the city and then don't have to drive back. We are already booked there for Naomi's wedding at the end of June. They are fully equipped with hospital beds, hoyer lifts, commode chairs and all the other necessities of life that we need now.
Anyhow...again...thanks to all our family and friends who care so much and are so supportive of us! We love you all and appreciate you all more than you will ever know!
Despite the fact that I am an incurable optimist, sometimes the shit we are going through just overwhelms me....and I often respond in typical 'guy' fashion by getting quiet, feeling sorry for myself, licking my wounds and as Joan says ' staring into the fire' ....That is a nice way of saying that I 'dial out':) Listen up guys....that is NOT what your (my)woman needs! We (me) need to speak and communicate when going through that stuff, as that is how most of our wives (mine especially) deal with it in their hearts!I know all that stuff but boy, it can be darn hard to do at the time!
Last week we were laying together in the hospital bed on a rainy day, holding each other and crying. We looked out onto the deck and saw the first hummingbird of the year at the feeder....what timing! Joan said God sent him just to cheer you up! We cried some more, then laughed. I thought- if this little bugger can fly 2000 miles and make it - so can we! God indeed sent that little hummer to us that day! It never ceases to amaze us how when we are down and sad that God always reaches out to us...either through people or even little birds!
To top it off the Grade 2/3 teacher stopped off at the house and brought us a calendar the kids made for us....each child painted a page and signed it- they chose a scene to match our decor based on their visit to our place, complete with an inspirational message! There are only 25 students in the class so our month now has only 25 days! lol Anyhow...it was so touching as the drawings showed such care and hope...many more tears were shed...thanks kids!! We could not believe that a teacher would organize and co-ordinate such a gesture...what an educator!!!...these are lucky kids! We have been so overwhelmed by the way we have been 'adopted' by these kids, teachers and by the town itself.
Anyhow....we have made some decisions that we knew needed to be made. We are setting up a meeting with the homecare folks to start getting some help from them. We have already met a few times with the coordinator and they are super! We are also setting up a kind of' volunteer help calendar' for our family and friends who have expressed an interest in helping. My goal is for Joan to have at least a day and a nite away every 2 weeks or so where she does not have to be bearing the physical weight of all she has to do 24/7 This is so hard for us cause we did everything together - our idea of a break was not to be apart but to go away together. The thing is though, she needs a break from ALS, not from me.....I hope :)
We are also going to try and take advantage of the Brummitt -Feasby House in Winnipeg - it is a hospice home run by the ALS Society - and they sometimes have an available room where I will be able to stay and Joan get a bit of a break when we do things in the city and then don't have to drive back. We are already booked there for Naomi's wedding at the end of June. They are fully equipped with hospital beds, hoyer lifts, commode chairs and all the other necessities of life that we need now.
Anyhow...again...thanks to all our family and friends who care so much and are so supportive of us! We love you all and appreciate you all more than you will ever know!
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