Tuesday, November 25, 2014

WOW! Just a little late...

So I was alarmed this morning to find that I had NOT posted the final numbers of the 2014 TBI Awareness Bracelets yet! (sheesh.... talk about cheese for brains! :) )
I searched instagram, FaceBook, Twitter... my blog.... all the usual places I share this amazing news and I came up empty! I can NOT believe that I didnt share the results!

Just to remind you what my 2014 goal: to reach TWO new countries from last years campaign (5 provinces, 42 states, and 6 countries (the 2013 new country was Russia!)

SO without further ado here the are actual results:

6 provinces
48 states
10 countries  (new ones being: The Gambia, Africa, Malaysia, Scotland, Holland, Western Australia)

I was shocked at the numbers of emails that came into my inbox at first! I received over 234 emails in under 24 hours and they kept on coming! It was so overwhelming but there was a warm fuzzy feeling  that went along with the  heart-wrenching  letters that I was sent. I tried my best to respond to everyone of them and send as many bracelets that I could send to each request. I apologize if I missed any!
With the money raised from last years donations I bought green lanyards and I gave those to as many people as I could also! I am starting already to work on the 2015 campaign and wonder what I could do instead of bracelets again, but arent too expensive as I have to mail them out and things are just so darn expensive to begin with! I would like to keep my numbers of awareness araticles to 1500-2000 if possible but without going totally broke either!  Any ideas?

Thanks for being so patient with me, but if you are a survivor or a careigver you know how life gets... not just busy but crazy busy with a new twist everyday!

I will update on Sam and Dad soon, there are lots of things to update but my head is not in a place to share some of it yet....but I am working on it! :)

Saturday, June 28, 2014

who am I now?

Pee Wee Herman annoys me, really and truly annoys me but this picture says it all:

I have never really considered myself a caregiver to Dennis (since I married him after his accident). For all intense purposes, I am my dad's caregiver in the respect that I am his only child and closest relative. I am the one that the PCH calls when there is trouble, he is sick or needs new anything -- but someone else (many other someone else's) do the actual day to day care of him.
I was Sam's caregiver (and mom) while he was at recourperating for the better part of 5+years...

... but now he lives on his own. Now he makes most of his own meals, pays his own bills and makes his own decisions... for the most part... we still help with things that are needed and work hard to guide him in a direction that should come as second nature to most 18yr olds. (Sam is still basically 2 year behind in most social aspects of development -- so he tends to act more like a 16yr old... a lot)
He calls us when medical issues arise, when there is a legal issue and so on and so forth...

I used to be a caregiver... but now what am I? I feel lost and as if I am floundering. I am trying very hard to not meddle or interfere (I am sure if you ask Sam tho I am failing at that). Am I still considered a caregiver when he is 18 and on his own? I know I will be again if things go sideways with his health.
Have you ever had to switch from caregiver to parent over night!? How did you do it? Which do you consider yourself? Because lets be honest here, lots of people are parents and lots of people are caregivers and sadly it is so freaking hard to be both!

So I ask again "who am I now?"

Tuesday, June 3, 2014

some things {just} never change

so to catch you up on the latest here in our corner of life:
Sam is now done with school, moved out to the town 30miles from us into a cool little basement suite and has been working for a local farmer there for about 2 months. 
He seems to really enjoy his job (working with both cattle and grain -- the grain seeding and all that is included in that is a new adventure for him). 
On this past Friday, Dennis and I headed into Brandon for a quick trip to pick up some farming supplies and received a phone call from Sam that should he go to the dentist to look at the tooth that the calf broke when it kicked him in the jaw!
We got things sorted and got him to the dentist before he left for the weekend and then off to the hospital to check on concussion risk and other issues that may have come from it. He was checked over by the nurse and sent for X-rays (in case of a fracture) then we were sent back to the doctor to have him fully checked out.
I went in the office with Sam for a few reasons (one of them being that we are not fond of this doctor or the bedside manner but in our small town {and saddly even neighbouring towns} there is no choice of doctors -- you hav to use the one they 'gave you' basically)but mostly for moral support as he is not used to having to deal with these medical issues on his own AND lets not forget ... well... he forgets!
So I was there to help him out.
Firstly, she didnt even look at his X-rays, stating that she could 'see he had no fractures', then when he told her about  his BI and seizures and whatnot, she 'listened' (using that word loosely here) because as it turns my concerns were totally founded -- but that comes later. She said he had no concussion but it was good for him to come home with me so we could be there if 'anything happens' (now what would happen if there were no concussion or fractures?!) Take it easy this weekend and no work til Monday...
NO CONCUSSION--- yet he had blurry vision and a headache... ok... maybe I am over protective.... but really!?
NO FRACTURE -- from a glancing look and a bit of poking with her fingers... ok no screaming from Sam either... so thats good.

Sam came home with us, slept crappy, ate very little and looked like hell on Saturday morning. Swollen face, circles under his eyes and tired. But he got thru the day and did a bit of tinkering, admittedly he went for a ride on the dirt bike (which I was against) and then headed home to meet some friend for a movie intown (but no driving). Woke up feeling a bit rough on Sunday but felt better than Saturday -- so he must be on the mend. Then up on Monday morning for work...
dizziness, nausea, blurry vision and a general feeling of crap. NO going to work, calls me and i tell him to get to the doctor again and make sure she looks at the xray  AND listens to you!
Luckily h is able to get in in the afternoon and this time she listens ... i think.
Her diagnosis is that Sam was having a delayed reaction to Fridays activities (concussion!?!?!) and he probably has an infection -- so med's so that it keeps a fever away and risk of seizures -- and no work for another 2 days! (updated count of days off now 4! Four days with no pay and Sam is stressing a bit from it...)
Some things just never change! I thought we were done with doctors and them not listening to us about Sam and his BI. Doctors need to start listening to the caregivers about things - no matter how small or 'insignificant' they think the information is! We usually know a lot more about BI's, symptoms, new treatments, expectations... you name it we usually know all about it! JUST LISTEN DAMN IT and stop making us feel small and crazy! We 'specialize' in this, they usually don't.

**sigh** Ok Rant is over: Sam is starting to feel better and hopefully back to work tomorrow.

Wednesday, May 7, 2014

New ideas for next year

so as I am up to my ears in envelopes and bracelets, I am thinking of changing things next year for the bracelet campaign.
I will still love to do the hand written parts but I will be investing in return address labels or a stamp, I will cut down on the envelope decor, the letter will be signed by me and then photocopied (I will still address each letter and still write notes if needed) and I think I  may go all with one size envelope so that taping it shut may not be necessary.

If you are wating for bracelet(s), please be patient and know I AM working on it! I am a bit overwhelmed with not just the 2014 campaign but also we are busy with farm life (calving season, pigs farrowing, chicks are here, rainy weathermaking spring work hard to accomplish) family life (Sam moved out, his graduation and getting ready for it, Hannah is busy with baseball and Isaac with his music and art) cleaning up from winter messes in our yard.... I am beat! But I am getting this done!

Today I had some help from some friends and my mother in love! Three of these lovely ladies addressed and prepped my envelopes (marking them so I know how many bracelets, stickers, whether a survivor and/or caregiver, etc.) , another lovely stamped the envelopes and pinned  states/provinces/countries on my map! All the while I was writing on letters, filing out cards and stuffing with bracelets. (set aside to be taped shut later tonight). I was so glad to have the help today because addressing sometimes slows me down as names tend to sound familiar to me and I have to check if it was because I had already done their bracelets or from the year before.... usually it was because I had emailed everyone first ... **sigh**
All of this is why I need to make this a more stream lined project next year! So any and all ideas will be welcome!

A smiley thot is that I have all year to plan! :)

Sunday, April 27, 2014

Needing to be stronger than I feel

today is the day I guess.
after 5 long years of medical appointments, long drives, days in the city at the hospital, waiting for appointments to be done while I wait at the Ronald McDonald house, constant phone calls looking for help, nights that never seemed to end as I watched him sleep in a hospital bed, days that I wondered if they were ever going to get here .... are here now.

Sam moves out today and my heart is so .... happy for him to be able to be at this place where we wondered if it would ever happen and yet tired from holding in all my emotions this week, aching from worry of whether it is going to be too much for him, breaking from the knowledge that he is not my little Sammi anymore. I just want to hug him and never let go....

We have all been through so much mental anguish these past few months with him that I know it is for the best for us all. We will not be so touchy, so grouchy and so short with each other. It is time for him to stand on his own two feet and learn to make his way in the world. It is time for him to start making mistakes and most importantly to learn to deal with the fact that he does indeed have a brain injury and has to take measures to learn to look after himself AND the rest of his world.

We found a great basement room in town {which is 30minutes away butonly 5 minutes from his work) where he will share the kitchen with the owner. He has a large area in the basement to use for a bedroom and a living space, a huge bathroom (with laundry facilities), use of the kitchen & yard. He has no yard work to do and there is the chance of a housekeeper once every 2 weeks to do light cleaning.  He will not have tv (until he has saved up some money to get cable or satellite) but he does have internet (so once he has saved up for a laptop he can get netflix or whatever to stream tv). He does have a tv with a DVD player so he will be good for movies.

I am excited for him but at the same time I am worried (I am mom...) I am worried that his landlord will get frustrated with his memory issues before he has a chance to get settled into his routine. I am worried that he will not look after himself with eating (and all the things that teens do when they leave home) and he will get sick -- which can result in him seizing, which means hospitals, no work.... not even going to finish all the worries I have here. Sam was looking fairly stressed yesterday as we were packing and making lists of groceries and things, so we a forgoing church today so that it isnt so much activity {and emotion}  for him and we will head in to the house after lunch. These are the things I mean when I say I worry he doesnt realize the toll that things take on him and all the preparing we have tried to do with him over the years all come down to now. This is where his denial kicks in and he will over do it and ignore the signs his brain will give him before it shuts him down....
I am sitting here this morning trying to stay positive and tear free today (which I have failed at already). This IS a joyous day for Sam and for Dennis and I .... and I need to enjoy it as so, but my heart is still such a mess, my head can't seem to shut off and the tears keep trying to spill.

I have told the 'landlord' about Sam's seizures (in case he happens to have one/some and he hears them OR Sam wakes up and knows he had one he will need a ride {or 911 call} to get to the hospital) and as much as I wanted to explain all the small issues that he may (I am hoping to not say will) notice but I didn't. It would be too much to explain, Sam would be embarrassed and it might possibly freak the landlord out and rethink his new tenant. But he does know of Sams injury and I hope maybe that is good. I know the landlords mom so he may know more than I think.... lol thank goodness for small towns.

... to grown man and graduate <3 td="">
From 12yr old boy ...
I know there are mom's (and possibly dad's) who will read this and not have a clue as to my worries and write them off as I am an over bearing mom, or flippantly say "oh you are worrying too much, he will be fine"  but until you have walked the journey I have in the last 5 years you have no idea. To be honest Dennis has no idea of all that Sam and I have been thru. Sam is the only one who knows this whole journey (and even that is not complete as his memories are scattered due to his BI and the year he lost on seizure drugs....) and he is nervous but excited..... so I will be strong {at least stronger than I feel} for him as I have been the last 5 years and I will not let him see me cry.

Tuesday, April 22, 2014

Seriously... what next!?

So for the last 5 years I have been phoning and fighting and phoning more to try to get help for our son! From when he was 12yrs old we were constantly told from the medical professionals and government offices that there was not much they could do for us "now"... when he is an adult there will be more help available. (we were quite frequently reminded {like we could ever forget} that there was no 'real help' for Sam as most were not 'equipped to handle or deal with youth brain injury'.

ya... not a big surprise to us here in Manitoba.

Even when he had seizures, we were sent to the 'adult epileptologist' since he as 15 and soon to be transitioned to them anyway, only have us tossed like trash to the curb of the hospital when we were finally being admitted in for an week long ambulatory EEG! (this was after they messed with sleep, food, meds and moods -- AND Sam had a fractured ankle!!!) Then we were moved over to the 'child epileptologist' who did nothing but drug our son to the max and created a whole other lifetime of issues we will deal with! And had plans of keeping him on the high doseages of meds until he was 17-18yrs old {basically until he was old enough to transition to the 'adult epileptologist' .... again} We could not get in to see any psychologists, psychiatrist or counsellors either without getting "we are not equipped with dealing with youth with Brain Injuries" OR the best one "you are handling this great" "call us if there are any issues" (from 3hours away and a mile long waiting list)
So now he is 18yrs old, has never had any real help in dealing with his stress, BI or issues that arise with BI's (addictions, PTSD {which we were told there was none}, etc) and is in full on denial about it all!
We have been trying to get a disablilty tax credit for him (so he can work but have a bit of extra wages to not have to claim) and we were told that NO he does not qualify. We used his neurosurgeons diagnosis of "long term permenant brain injury", "at risk of seizures", "some cognitive issues"... and we were refused. We thought we would go the route of the neurosurgeon AND the psychatrist he saw for a few days while in the CATC (child and adolenscent treatment centre) from 2 years ago. He just informed me that it is almost impossible to get the Disability Tax credit (it is very convoluted and full of crap) and he only has a hand full of patients who get it. It is easier to get Disability in the form of monthly cheques (Canada Pension Plan) BUT Sam doesnt qualify for that either!
So basically this guy- our Sammi- has had NO HELP (other than us and loads of prayer) to deal with his BI (in the formative years where he really could have used it) , so we are at a place where he is now in denial of it all -- and there will be no help for him in the future until he hit absolute rock bottom and has to try to find help then (and honestly I am scared of what that will entail with him) which I am sure we will be told it "should have been done earlier on".

Sunday, April 20, 2014

First time for everything...

 Well just under 2 weeks ago I sent an email to a FB group I belong to (Help Raise Traumatic Brain Injury Awareness) and told Dustin (the group admin) I had TBI awareness bracelets (and 100 Oak Leaf Stickers) again this year ....
Last year I received about 200 emails over the entire year and made my goal of a new country to send a bracelet to (that would be Russia) -- so to say I am just in awe and overwhelmed at the response this year is an understatement!
My last actual count of requests were 375 emails PLUS messages on FB and I have had many MANY more since then!
I have tried to keep everything as organized as possible by returning an email to all sent to me, along with a note to the sender that I am working on getting bracelets to everyone who emailed so some numbers of bracelets just wasnt going to be possible. I also wrote each mailing address in a notebook so as to keep track of where to send bracelets (and praying to not miss anyone!)
I have a few things to add to each envelope that I still need to do, along with addressing each envelope and putting our return address too. For the frist time ever in this awareness journey,  I have asked for a bit of help from people who live in our area but so far there is no solid help.
It looks like this could be a slow process and I pray for understanding and patience from everyone.
I will try to keep the blog up to date on the progress and on my goal (so far so good!).

I am going to ask for prayer for a few things (if you wouldn't mind):
1. Help in getting this next step done in a timely manner
2. Making sure I get bracelets/stickers out to everyone who has asked for one (or a few)
3. I also have a request that I will not put on here but God does know (well of course since He knows everything) but just that if it is needed that it comes to fruition.

Friday, April 11, 2014

Prayers NEEDED!

Please pray for our Sam today as he is struggling .... majorly .... big time struggling with life!

He has had a very rough learning curve week and that has seemed to really mess with his head. We had a good day this week working with him on the farm (even after a serious issue arose just the night before) and then this morning I asked for him to please leave his phone alone until 8 -- just as Isaac and Hannah have to leave their ipod alone until this time too (explaining yet again how it is not fair and confusing for them when he sits around texting doing nothing... {and he should be getting ready to start his day with us on the farm) and they are busy getting ready for their day.) The rule of no iPods/iphones in the bedrooms still applies to all kids no matter their age and living in our home.

He replied 'ya' and as we continued on with our morning, he took the phone to his room (in the basement) and we tried to talk to him again... and we were met with He is moving out then.  (we think he is having a serious braininjury moment right now where his brain is telling him that the sky is green, the grass is blue and up is down and down is up....)

Now, we have been working with him to get him moved out to one of our farm homes for the first of May  ....  this is about 20 days away. He will only have to pay utilities and we are helping to get the house ready for him, giving him furniture, a car, etc. I have told him to make a list of groceries he thinks he will need to get started with and I will go shopping with him and pay for the groceries ...

His attitude this morning is he is tired of living here and wants out.

The earlier issue that happened this week will be a big obstacle once he does move out -- and I have tried to point out the good reasoning to moving into town (closer to work -- 10 mins so less $$ for gas), less time spent driving when he is tired and fatiguing, closer to activities that he enjoys, no worries to bad weather and driving.... etc etc.

I feel like he has a 'friend' and his mom working on his head. They have asked him to move in with them a few times he says, yet then in the next breath he tells us how they are really struggling financially. He says she will drive him to work (even farther then what he will drive if he lives in the other house -- and we pointed out that that would be a 4X gas bill for him... at possibly $1.30/L) I dont see why another parent would step in with these kinds of offers when they KNOW what we are doing already for him and then I question what has HE been telling them about here that would cause them to make the offer. (and not possibly ask us about it ....) I am at my witts end... I am sick with a cold or chest infection, I am tired, I am mentally exhausted and I am in desperate need of a good crying jag....

Please pray for Sam today. I am struggling to not sit and worry and cry and worry and cry some more. I am trying very hard to hand this to God and let Him do what He does... but then my mama brain kicks in and ... well, you know what happens.

Monday, April 7, 2014

I am about due...

It has taken me over a week to write this post and actually post it ...

I have been debating with myself again (as I am prone to do alot in this journey apparently) of whether I should post our new 'goings ons' or just leave it and hope that things change and get better...
I have wrote postings in my head a thousand times while driving my van, walking outside, washing dishes, laying in bed trying to sleep... (for the record those postings all sounded so interesting and so 'together', even eloquent, in my head -- nothing at all like I am sure this one will sound) but in the end I have always brushed them off and thought that it was not worth the time to pour out my thoughts and possibly shed the tears that sit behind my eyes ... again... lately. This is a post that I am scaed to actually publish because of the many 'nay sayers' (for lack of a better word) that have brushed off my concerns and worries with "oh that is just a normal teen/man thing -- dont worry he will grow out of it". People who do not know what it is to live with a survivor of a brain injury. People who do not know what it is to see the change but the rest of the world (this includes family and friends) does not. People who do not deal with the day to day issues that face not just a survivor but thier caregivers too. People who probably mean well but

Our Sam finished his grade 12 year in January and is now a high school Graduate!!! YAY!!! I am so proud of him for sticking it out and doing what he set out to do 5 years ago after his accident! His marks were for the most part ok some not so much but enough to pass.
Sam also turned 18 in December...

Enter the hormones, the know it all attitude, the "I am 18 and you can't stop me/tell me/make me's". Add to this his BI and the text book responses he is having to life and issues that pop up. I know if you dont life with a survivor you wouldnt know about some of these issues and you might be tempted (notice I said might be tempted to say to me or other caregivers) to say "oh that is just a teenager/man/husband thing that is so normal!"

Sam has a addiction I believe to his phone... ok that is normal teen behaviour. He also seems to be really addicted to texting
 (using his phone and apps on his phone) people he doesnt know. He sends pictures and I am prety sure he is sexting. Now that wouldnt be a big deal to some but when you see how it takes over his life you would be concerned. He never puts his phone down and charges it multiple times a day. We have asked him to be respectful of our rules but we get nothing from him but "yep ok" and then no action. He will rush to get work done (and not do it properly or at all!) so that he can get back to his phone. He doesn't pay attention to what is being said unless you make a point of forcing him to listen and repeat it back. I am seriously worried!

The past week or more he has asked for advice and when it is given to him he doesnt take it and actually does the complete opposite. He is planning  to move out in May to one of our homes but he doesnt seem to have the motivation to get the house ready (some minor mudding has been done - and there is some major cleaning needing to be done and a bit of painting now that he has mudded). He sits on his phone. He needs to save his money so he can  move out! ("rent" - which is really just the utilities -- and  groceries will be needed) but he doesnt save he spends, spends, spends the little bit of money he makes from his (at the moment)part time job. He will be starting a full time job in 2 weeks and that is going to be a whole new learning curve for him as it will be for a farmer-- so long hours (he is not used to and I am sure he hasnt explained his BI to the employer) -- enter his fatiguing, lost of equipment operating (enter NO CELL phone/texting) PLUS there is about a 45 minute drive to and from work! It will be 'interesting' (aka nerve wracking)!

Grandpa was going to give Sam 2 bred sows to raise to sell the piglets and we were all for it except Sam didnt save any money for the feed and has done nothing to get ready for these pigs. We bought all his feed last year for his pigs and we did a big part of his chores with them too and he got all the money for them... not a problem. BUT we told him to save some money for this years feed and to get set up for them and he has done nothing! We will be very short handed this summer on our own farm with work and wont have time to be running up to his place to look after his livestock and buying his feed! He is a bit pissed at us for this but what are we to do? He doesnt seem to get that once he is working for this new farmer he is not going to have the time or energy to look after more things than himself! We have tried to explain to him to try to enjoy being out on his own first. It will be a huge adjustment.  And still somehow we are the big jerks in this! We are not supporting him! We are not letting him live his life! And yet he doesnt see what can afford to keep our own farm business running AND support his!

He also seems to think that for whatever reason he has no responsiblity to us here on the farm when he is not working (4 hours a day a few times a week right now). We gave him a car (which will be transferred to his name when he moves out and we will pay a year of insurance for him), we give him a house to live in now (and in the near future!) we ask him to help with a few things and it is like pulling teeth! I know that is most teens but once they are done school you would think they would want to do whatever is necessary to get out on their own!?

Sam has also taken to drinking -- I am not sure to what degree but it scares me from the way he talks to his friends about what and how he will be drinking! He doesnt eat (he has lost a substantial amount of weight again), he rarely drinks water and his sleeping has been irratic again.  We are not so naive to think he wont ever drink -- we drink and allow the kids to drink in moderation here at home with us -- but he is setting himself up for the perfect storm... His driving has scared his brother with the speed and lack of concern for the passengers.

I am just so tired of fighting about everything with Sam about  what is said or done these days! I am struggling with my depression again and find it exhausting to hide it from everyone-- which I am sure I am failing at too.  I feel like a bad mom for wanting him to get out on his own so he can see what we are trying to do for him... I am so tired of always being the 'bad guy', the 'bitchy' one, the one who is there no matter what but always gets shit on...

I'm about due....

Tuesday, March 25, 2014

And it begins again ...

So it begins again. My third year of giving out silicone Brain Injury Awareness bracelets! This year they are green with white lettering, a new font, a new leaf graphic! I am so excited to start getting these out into the public!
I also have 99 green oak leaves to give away. I am seeing what people think of these  to maybe switch it up a little -- just in case people get tired of the whole bracelet idea.  A local business made these up for me and we will see how they go. (the oak leaf is representation of survivors - there are over 600 different species of oak trees -- kind of similar to survivors in that there is no two injuries the same!)

I am starting to get my address book ready, the letter that I send out is typed out again and printed with a new leaf picture this year and I am busy with putting pictures out into the social media world to spread the word on this! If you are on instagram and want to follow me: @mb_farmgurl my facebook link is on bottom left side of my blog, my twitter account is @FarmGurl72

As in the past all I ask for with receiving a bracelet (or sticker) is that you let me know you got them and then to also post pictures of you wearing the bracelet (or where you put the sticker) and hashtag it  with brain injury support (please tag me in the pics on instagram or FB so I can see it and share with others too!)
I have two goals again this year and they are as follows:

1. Spread awareness that will encourage survivors and caregivers AND encourage the general public to GET EDUCATED on Brain Injuries -- it can happen to anyone at anytime anywhere!

2. To send some bracelets (and now also stickers) to a new country! Last year I reached my goal and sent bracelets to Moscow, Russia!!!  Bracelets wen to 5 provinces, 42 states, and 6 countries -- this year I want to see those numbers grow, grow, GROW!

I have approached a few "local" celebrities (local as in Canadian) to offer bracelets to them to wear but as of yet have not heard from anyone. (please keep praying that we will find someone to help spread awareness on a grander scale than what I can do in my little corner!)
If you have any ideas on spreading awareness or know of anyone that would like to help with this or if you just want to request a bracelet(s) or sticker(s) please email me at braininjuryadvocate@gmail.com

Here is to another awesome year of spreading awareness of Brain Injury!! GET EDUCATED!!!

Monday, February 24, 2014

the call

I received a phone call last week from the PCH where my dad lives -- well someone called and I wasn't home so Dennis tookt he message and relayed to me to call them back.

It was the nurse practitioner.

My heart always does a little bit of a jump when I have to call the PCH as it is and when it is the NP that is calling it does a double flip.
She was calling to tell me about Dad's "new behaviour" (which really wasnt new but they finally took what  I have been telling them to heart and started documenting it). He has been calling out more and more (big surprise), he has been much more agitated (no kidding) and he has just generally not been too happy about things (**shock** followed by **sarcasm**).
I am trying hard to be understanding and allowing that there are many others at the PCH, but when you have a few residents that are TOTALLY incapable of doing anything for themselves, you would hope that they would take things more seriously when a family member (the only family that the resident has that visits regularily {or at all really}) repeatedly reports seeing something that is making the resident unhappy!
Anyhow... apparently they monitored and recorded what they saw over the last 2 weeks and have seen that Dad gets quite vocal (yelling and swearing) when he is uncomfortable. So when he is in his chair (his new chair that was ordered without my knowledge AT ALL)and he starts yelling, they will transfer him to bed -- and when he is in bed and he does the same, they will move him to his chair. This move I am sure will be a lot longer in coming as his room is almost at the end of the wing he lives on and is far from the nurses station and the common area. (basically I think once he is in bed ... that is where he will stay until it is time to get him for meals) I will give the staff the benefit of the doubt tho and see how it goes.
The big issue that really got me is that we are now uping a few of this med's. It is all in Daddy's best interest but it was (and still is) a big tear jerker for me. He really isnt on too much (we were able to ge thim off of alot of unnecessary medication over the last few years) mostly just tylenol for the pain of alwasy being in a chair (or bed),  stuff for BM's and a low dose for depression. The tylenol will now be replaced with something that will not do damage to his kidneys (a bonus) and it will work on the pain issue (double bonus), we are uping the depression meds to help with his moods and maybe help with the yelling and calling out -- but it may make him a bit too lucid (in my opinion) but again we will have to see how it all goes!
I know it is hard to see why giving Dad higher meds that all seem to be bonuses is hard to take, but all that keeps coming back to me is what the doctor told us when he was in ICU in Edmonton 18years ago. Dad will live with his BI (no time line was given)  and start to regress before he ....
It hurts my heart that this could be ... the beginning ... of the end? I dont want my Daddy to be in pain or live a life that he is not enjoying, but it is hard to watch this decent -- even though I have been watching it for 18yrs. Maybe I just need to get a grip and deal....

Saturday, February 8, 2014

another stressful visit ...

so we headed over to visit my dad yesterday afternoon after some running around for the farm and groceries, banking etc. We got to his room to find his door partially open and voices coming from inside. Dad was being woken up, cleaned up and put into his chair. I was not overly bothered at first at the door situtation -- as it was most likely over looked and just not closed tightly and no one could see in .... but we could definitely hear what was going on inside.
There were two aids getting him up and they were talking to each other (which is not a big deal) but they were talking to each other about pay cheques and amounts and other work related issues (we were thinking that contract talks must be happening by the sounds of the conversation) and  they were obviously talking over dad and ignoring him completely. He was becoming quite vocal and loud ... he was moaning and swearing at the ladies and becoming belligerent. Now my dad has severe brain damage and for the most part has the mentality of a 7year old(and most likely it is less than that). So his go to answers when he is frustrated is "my bum" or "f--k you" or the most recent and most used "I'm gonna f--k you" which is what was started last night ...again. As dad was trying to stand up for himself the aids ignored him, which made dad get louder and more vocal which made them louder to talk over him!
After a couple minutes of this I knocked rather loudly onthe door and told them who I was and that they were ignoring my dad and he was stressing out! They apologized.... then closed the door! I was not impressed.
When they left (very quickly and not making any eye contact I might add) we went into see dad and the swearing and belligerence continued. Dad was in full gear, so I went and spoke to the lady who is supposed to be our liaison with the staff. I am not going to go into detail about what she did (or rather didnt do) but I will just say that when you have a job working with people, whether they are healthy and are capable on their own or not, and the most important thing to note is that there are other expecting your help in caring for their loved ones! The care you deliver on a daily basis to our loved ones is not just for them, it is for those of us who come to see them too. I would love to be able to look after my dad but I can't. I KNOW I am not mentally strong enough to be able to be his caregiver, I am his daughter, not the person who can change him and clean him. I know for the most part my dad is well cared for where he is but of late our visits with him have been extremely stressful and not happy, smiles and rainbow visits and after hearing and seeing what we did yesterday makes me wonder if they have been talking over dad a lot lately which would explain the past behaviours with our visits. They have been told to not do this as dad will also bite as a way of expressing (or posisbly he feels protecting) himself, but since he has had his teeth all pulled (they were rotting due to pocketing food and acid) they do not seem to be as conscience  of watching their manners (because his 'bites' no longer are 'dangerous' enough to draw blood or break the skin).
One of the comments that dad made to the laision was what he was going to do to her and she laughed and said "you can say that all you wants but it isn't going to happen'. She laughed it off and turned to me and said 'its been years since anyone has said that to me'... I was in such shock over it that my reply of "well I never want to hear my dad saying it, especially to me" didnt come out of my mouth until she had left!
 I know people can say he doesnt realize he is saying it, but put yourself in my shoes. All my memories of my dad and I are being replaced more and more frequently with these visits. What would you do? What do you tell yourself to get through those doors of the PCH? How do you want to visit your loved one when you know your visit will be a negative one that has the potential to stick with you longer than the happier ones?

Monday, February 3, 2014

things are {possibly} happening....

Oh my goodness I am so excited!! I have a few 'irons in the fire' so to speak for this years campaign for Brain Injury Awareness! I have ssent out a few emails and have had respinses back that they are moving on to the next step .... breathe Jodi... breathe ... and I am just over the moon excited if they (or even ONE) pans out!
I dont want to say anything right now but HOLY-Mackinoly Batman... very exciting!! Keep watching here and I hope to have a something to share in the near future!!

 (off to check my emails friends!!)

Sunday, February 2, 2014

and so it begins ...

so Sam has now officially finished high school ... yay... umm  I mean YAY!!! I am so proud of him and glad he has finally finished and is able to start working on living his life.... on one hand... and yet on the other I am scared, nervous and sick about him starting this life.
He has a job now and drives 30 miles to it. he wears a uniform and is in the produce section of a local grocery, which is all fine and dandy. BUT did he remember to put on his papers about his BI, his chance of seizures, his issues with sometimes forgetting simple things or his sundowing if he is tired and is starting a shift on a later part of the day, what about when he has a braininjury moment....

i could go on and on over my concerns and worries. I try very hard to remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (NIV) but sometimes it creeps in. 
He HAS had jobs before and he has done amazing with them, but they have all been for family or friends who understand where he is coming from. 

I also worry about his future with regards to his future bride... I know I am jumping the gun here HUGELY... but I am his mama and I want her to understnad what this wonderful man has had to overcome and continue to overcome to get along day to day.... 

I worry about him driving when he is tired, about him when he is out in crowds and they get to be too much for him...

i guess it all comes down to it is time for me to start cutting these apron strings... he is growing up and will be soon moving out (hopefully not too far away) and I will miss him.... 

i worry, I am a mom, so I am pretty sure that it is written in my job description somewhere.... if its not I may have deifinitely it penciled in .... 

how do i start to let him go? I lean on Dennis ... a lot ... i mean A LOT. i sit and try hard to not cry when I think about it and i pray... and pray and pray...
for Sam
his future
his job
his future relationships and one day wife

for me to be able to handle this new stage gracefully without holding him too tight or causing him to run from us....

if you have any advice I am all ears...

I ❤ Brain Injury Survivors & Caregivers! Never Give Up!

well another year is here and I am busy looking into more bracelets and ideas for colours and wording! I am thinking this year will be:

I ❤ Brain Injury Survivors & Caregivers!  (oak leaf graphic) Never Give Up!

The bracelets will be green with white lettering -- I have seen the template and they really POP! 
I am so excited about this year again -- especially after last years campaign when I had discovered I had sent almost 1500 bracelets to 5 provinces in Canada, 42 states in the USA and 6 countries in total!! So I have my thinking cap on  and make a new goal this year! 
I was wanting to do something other than the silicone bracelets this year but it is all about economics right... and with the cost of groceries, gas, clothes ... life basically I had to stay with the bracelets. BUT I am hoping for 2000 bracelets again this year! (so 500 more than last year!) 

I am still getting emails about wanting bracelets -- in fact i got one this morning! So much for a "june campaign' eh! lol I DO NOT mind in the least! I am so happy to get an email or reuqest for bracelets and to make up an envelope and get them out!! I do little happy dances for each one! (ya I am that weird! :D) 

Well if anyone has any good ideas and/or leads on a new idea for the 2014 Brain Injury Awareness Campaign, PLEASE let me know!  I have not ordered bracelets yet and probably wont for about another week or two! I am open to ideas!!! Email me at