.............An addition from within my previous entry PS.....( sorry it was way too long, why that bothers me I don't exactly know, its not like anyone but me has to read it. It is hard not to feel like all I do is complain. I don't want to be like that. I just need to get this out the rare times I can, whether I seem too dramatic or not. It is my honest experience)
There so many terrible things that happened to my mom in the system, I have not mentioned many of them yet. A few will remain between her and I. It takes a very long time to process everything that happened if it's even possible. I had to live in survival mode for her sake. I could not dwell on the "smaller" things very often because we couldn't afford to pay attention to most anything, unless it was life or death. These things I speak of now, are not small for me. They never have been small for me. I don't have to be a nurse 20 hrs a day now and I can rarely sleep so I have a bit more time on my hands to re-evaluate most of these things that haunt me.
I constantly ask myself, was it just me. Was I the only person who thought this wasn't right, besides my mom. Was I just a mess from all the death in those few months. Could I be acting on pure raw emotions but fool myself into thinking I was doing a really good job at being objective in such a difficult time?
To be honest, as I usually am, sometimes too much so, I still haven't been able to answer that. I like to think I was mostly rational, hey, nothing is 100%! In my heart I feel it is wrong to treat anyone as poorly as mom was treated at times. I also know how miserable life can be if I don't follow my heart as I have somehow re-learned during this gigantic mess of loss in the last 2 years. Following my heart has cut about 25% or so of the misery out of my life and only caused about 15% more than normal, so I think I'm happy with the 10% improvement. However, you will have to ask me that again tomorrow... ha ha.. its life..if you can replace some tears with laughter I say why not? My mom taught me that all my life. Her sense of humor is one of the things I miss the most. She kept my on my toes!)
.................................< I would like to add that I didn't care about the cost of the pills. I do not like to talk about money very much, but that doesn't mean it isn't something that almost every cancer patient has to think about in some capacity. I would have sold my own house for one pill if even a possibility it could have eased her suffering. I didn't care about the money but I also had to respect how my mom looked at things and not belittled how she felt, even if I thought what she thought she was absurd. That's how she was treated by my dad for a long time and she was so smart. I tried to so very hard to not be another source of indignity, she had enough of them in her life right up until the end. I did not agree with her many times. I would voice my opinions if I had concerns about her health and explain why, but I tried very hard not to push most things because that was the first time since I have known her, that she didn't have someone trying to control her every move. I was not going to spend whatever time I had left with her being that person, and I fought with every thing I had to not allow the system take away her control, whatever the outcome of her decisions, good or bad. They were hers to make, not mine,not theirs. I just tried to provide her as much info as I could learn, as fast as I could learn it.
Mom worked hard, so did dad, they were fortunate to be able to afford these medications + food + shelter + both of these expenses when we went out of town for treatment. The problem was mom didn't feel worthy enough to pay that for it if it was "only" for her, when she got too sick to think about things like that and unless she was there when I picked them up, I just paid for it and didn't talk about it. It did put a strain on my husband and I financially considering we were down an entire income and had thousands of dollars in hotel bills and now full time daycare to pay for because I wasn't home to take care of Jaida, but these things were the best things I have ever spent money on. Having good credit turned out to be even more important than I ever could have imagined. You never expect to be in these situations. Jay and I made a point to discuss this early on too, we knew we would have years to recover from the situation. If it came down to it we also had a lot of family to count on for anything. For the first time I can remember I wasn't constantly worried about money for no good reason.This terrible time taught me what really mattered in life. I will "profit" from that lesson for the rest of my life.
Most of her meds were eventually covered by our medical system....the catch was mom had to sign a form ( at the same time they whipped out the DNR (do not resuscitate order) declaring she was palliative or terminal whatever you prefer. I don't prefer either. All we needed to know was there was one chance. Her family doctor might as well have put a brick in his sock and smacked her in the head with it. The only thing we went in there for was a prescription. He had not seen her in well over a month because we were in Kelowna and /or Salmon Arm.
What a psychological blow is that to a cancer patient that is trying to keep a little hope? The Palliative Care Benefit Plan......translated into tax payer words from always politically correct governmental lingo, it equaled this .... We are only willing to pay for your medicine because we all know you aren't going to live very much longer....but we really do care...PS.. you owe us $30 for the completion of this form....have a good...uhhmm...have a good one, thumbs up sign and wink. I would have paid 5x the price of that drug just to have the health minister at that Dr's appointment and have to witness what I saw that do to my mom.
I understand the importance of a DNR, for all parties involved. However there should have to be some type of warning so a patient and their family can have a well needed chance to prepare for that step. Mom and I felt very strongly pressured to sign that form. I wanted to read it and make sure my mom knew the implications. I was caught off guard and did not act in her best interest this appointment. I allowed mom to sign something I knew I didn't fully understand but I did not speak up and tell her that. I caved. We looked at her cancer in the next step format, no further when it came down to hope or the stats. We weren't near that step yet. We talked about death. I had to bring up these things to make sure I knew her last wishes so I could take care of the huge mess my dad left behind, both personal and business.
It is reality after such a diagnosis and I made sure I did it early when I was confident I knew she understood.... and because I didn't want to spend the same day I would lose my mom, trying to bring up these things I wish none of you will have to ever talk to your mother, or aunt or great aunt about. It's awful but very necessary. I didn't want to spend the rest of my life wondering if I did what she wanted because I was too scared to ask. I have enough things to wonder about the rest of my life and will never really know.
The nurse that replaces the Dr at that clinic for everyday but one day a month when a Dr is there, really understood me when I told her about the form experience a couple months later when I had to go in because I was sick. She spent over an hour with me and I felt incredibly guilty for taking about 50 mins of it. I kept telling her I should go so I didn't take up someone who needed that time. She said I'm with the person that needs the time the most right now. I didn't even understand what she meant right away. She cried with me when I told her that and a few of the other terrible experiences. All I could do was apologize for breaking down like that. I showed very little emotion, to almost everyone who cared for my mom unless I knew she was not being cared for properly and the only choice I had was to put my foot down and convey my concern in what ever way would make them listen. I only felt a couple of them understood and would believe me through my emotion. I asked her if she would mind telling my mom's doctor how unprofessional I thought that was and that in the future he should really think before he does that to someone else. I also told her about how I didn't want to know that he had just recently taken over as the palliative care family DR for that area, after another Dr up and left the position and no other DR wanted to do it. That was awesome. I told her I didn't want to know if it was true or not. I felt so much confidence in mom's care after learning that he was in that position because he had little choice. I believe it was one of the girls from one of the "home care services" that offered that up.
Mom could not afford a hostile relationship between her family Dr. and I. We didn't have anyone else to choose from. I cannot completely lay blame for all the cracks and all the lack of care on her family Dr, he was way too over worked and that area's resources are limited due severe to under funding.
Dr's came and left that more remote area like they discovered the plague. I must give him and the other few that stayed credit when it's due. There were very few of them. I don't envy their job. I'm sure it was constant chaos for the ones that stayed. Mom must have had a new Dr. more than every year for 8-10 yrs on average. Sometimes they only stayed a few months when it was supposed to be years and they just left weeks in advance to the notice they themselves gave. More than once mom went to an appointment and there was no more doctor. How can that happen? It isn't musical chairs they are playing. It's especially hard on the people who live in less populated and more remote regions. This is a huge, huge problem in our system and people do pay for it with their lives. My thoughts about this will definitely be in another entry.
OK, one little example, you twisted my arm.The Dr my mom had before this one had someone my mom knew well on both high blood pressure medication and low blood pressure medication at the same time, both prescribed by her within 2 weeks of each other. She just about died.
Whatever the chaos up there, it doesn't excuse the way mom's family Dr. acted in certain situations. There must be personal accountability. I'm glad I was on the ball enough that day to clean up the poorly chosen words that fell out of his mouth that day, that is, after I was able to recover my lower jaw from the floor.
I'm not proud of a ton of things I did for my mom. To me, that's what she would have done for me if not more. I am proud that I kept my composure that day. Remember it also hit me like a ton of bricks and if I lost it, it only would have traumatized my mom further. It also would have made me seem to be in complete denial about our situation and I already had enough problems trying to get my concerns taken seriously.
Denial couldn't be further from the truth. I actually wished for it at points when I was quite sure I wasn't going to make it either.We knew our opponent well, too well. We knew what the future probably held, we just chose not to wear the T-shirt. The government and her family Dr might as well have shoved that t-shirt down her throat during that appointment. I mean HONESTLY! I must also be honest and say that the word HONESTLY was not the first that came into my mind for that comment. That one is just for you mom :)
