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