Monday, April 16, 2018

pray... write... delete... post... pray... repeat...

Last Monday was my 14th care meeting at the personal care home where my daddy lives.  FOURTEENTH ... my daddy has lived in a care home for 14 years. Out of the 22years since his accident, 14 of them have been with us -- meaning he has lived here in Manitoba. Every year I go to the care home and go to this care meeting we discuss daddy's health - both physical and mental, we talk about things we will work on with him the up coming year ... and every year I have to agree to his health care directive. All the personal and gory details of caring for him.
Decisions get made every year that were made the year before - but that doesn't make it any easier. Every year I make those hard decisions alone. 

Every. Single. Year.

This year I got to add to the care plan that I have planned and made arrangements for Daddy's funeral for when the time comes. I spoke with the public trustee and explained to her how when dad gets really sick (and theres been quite a few times in the past 14 years) that I have to do a quick exit plan for him and its getting harder to do each time. So we (me, the funeral home and the public trustee) prearranged it all.  

whoo...

hoo...

done and done... 

I wonder where other  single children caregivers go to discuss any plans or arrangements, reminisce about the past or just to talk about how they are doing while going through whatever they are going through? I have no family to rely on. No one but me to have happy memories of my dad with, no one but me to go and visit him and discuss his care with... no one else to visit him period. So it is all down to me and I am willing to admit that I am failing in the daughter of the year arena. {I don't get the chance to see him nearly as much as I should. He is hard to visit with - he doesn't talk and when he does it is a lot of swearing and extremely inappropriate things being said. I usually leave with tears in my eyes and my heart breaking.} it gets very exhausting hearing people (who work in the home AND who all seem to think they 'get it' that its ok, at least I am seeing him when I can. "its quality right..not quantity"... but its not either to be honest).

I have Dennis and he is a huge help for some areas, but even he knows how hard it is because he never knew my dad. He met him maybe 6-8 times before the accident and that was it. He has no "hey remember that time me, you and your dad..." really to share. (ok we have one and it involves my dad in a field near a rock pile and a badger... marking said field while they were spraying). The next memory we share is when daddy showed up for Christmas after Sammi was born... then I never saw him again, until he was in ICU and hooked up to every imaginable machine possible.

I know wishing doesn't do any good, this is not something that is every going to get better... or easier. But I really do WONDER ... how do others do it!? where do they go? how to they cope?

At my BI meeting group no one else there is remotely in the same boat as me when it comes to this Brain Injury game... no one. 












honestly I had seriously hoped and prayed that this blog would have had at least ONE person cross my path that may have been of support.  so I will continue as I have started and I will pray, write...delete...write...delete .... possibly post it... pray some more....

...and repeat...



Sunday, April 8, 2018

hardest post ever to write


I have wrote this post so many times now...


in my head and on here and never actually hit publish...
I don't talk to anyone other than Dennis really about this...
and our kids...
we have asked for prayer from a few people but to actually sit and let someone know the whole sordid tale is almost too much...

I struggle to talk about it for lots of reasons:

1. worried how people will react or what they would say (most people don't understand Brain Injuries and so they rarely know how to react to that ... let alone a BI AND other issues)
2. hearing people tell me what I should do or should have done (condemnation for being a terrible mom)
3. having to look people who know in the eye and see 'that look' of pity or worse
4. I can cry at the drop of a hat... again
5. It brings back some bad memories

we are dealing with a lot of things with Samuel again. he is struggling with a lot of things as well... but he won't let us in to help and (I should say maybe its OR) he won't let us.

First of all, he has a drug problem. we don't know all the ins and outs of his use (and I don't know if I want to know) but he has a problem.  we know marijuana is one he uses... a lot.

He lies constantly. to us,  to others, to himself, to God... so much so that we can no longer believe a thing he says. Not sure if this is the drugs or the brain injury...or a combination of the two...  but it causes such grief.

He lives with depression and treats it with the drugs as far as we know along with ignoring it...

He is (and possibly still is - see above issue) in an abusive relationship with a girl. She mentally, emotionally and psychologically abuses him. we have seen her physically abuse him also. she is a  manipulator and very conniving. she can turn the table on someone so fast that they don't even know it. this girl we took in as our family, we loved her -- until she turned a knife on Sam one night and then herself -- and blamed it all on him. she has punched him and slapped him as well. Unfortunately, sam thinks he is helping her. He thinks she needs him. We have been told many stories about her and it worries us so much. she is slowly turning our sam away from us. I pray he sees this and her manipulative ways before things get way worse.

He can't seem to keep track of money (probably because a good portion of it goes to drugs or who knows where).

He has some medical issues that need to be looked after properly (not just partially).

He has lost his license many times and the latest is he has had his car impounded for 60days and has to pay a large amount of money to get his license back.

there is so many more things to say but I can't.  my heart breaks, my eyes cry, my brain spins.... and then I do it again.

I get so frustrated with all the time we spent after his accident trying to get help nothing physically but also mentally - so that he could learn to deal with his new normal... and NO ONE would help.  Now we are left with a man who can not deal with his depression, his brain injury or his abuse. He has never been taught... other than what we could try to help him with - which apparently wasn't enough.

I get so frustrated too that we FOUGHT so hard to get him to where the doctors were even amazed and this is how he is going to live his life.

He is spiralling down so much right now that we can only pray that it is the beginning of the bottom of the barrel...
but we have thought we were heading there so may times before it is heart breaking to get our hopes openly to have him keep digging that damn hole. he is caught in that vicious cycle of addiction and add the abuse to it...


This week I am going to be trying to see what we can do to get help for us. I will talk to the Brain injury association of Canada and see if they can point me in a direction of help (brain injuries and addiction is handled a bit differently than 'just addiction' I believe.) and if there is nothing on that path then I will call Teen and Adult Challenge and see if they can get me help. Along with prayer and faith that He knows how this story will end - because nothing NOTHING surprises God. I can't fix sam or his issues, but we can fix how we will react to him and everything he is going through - so we will do what WE can let God do the rest...

easier said than done...


I read somewhere that if your addict likes you, you are just an enabler.



so we need to stop.
that is just as hard to write as it is to say ...


... and even harder to do...





Tuesday, January 23, 2018

Be careful what you wish for...

I have many friends that are caregivers.
but we never talk really about its like to be a caregiver ... a caregiver in the many, MANY capacities we are all in... not really.
We talk at our BI meetings but we never really go in depth about what we go through, how we are affected or how we wish we could change things.

so to hear one of my dearest friends say to me yesterday that she has wished for many years to be able to have someone look after her for a bit made me tear up so fast and even faster, wipe those tears away and hide my own feelings of the same.
My friend has had her 'wish' "granted" but not in a way she had hoped. She was diagnosed and had surgery for cancer and is in a large, noisy, no privacy, not being able to eat (since Wednesday last week so far...) or drink... hospital.

With all the worries and stresses, that goes along with most people who are sick, have cancer, broken bones, fatigue... whatever...  and then the usual worries that those of us who are caregivers have about those we love:

Are they ok?
Are they taking care of themselves?
Are they taking their med?
Are they sleeping well?
Are they eating properly?
Is whom ever is supposed to be checking in on these things doing it and doing it properly?

I feel for my friend. I wish we lived closer so I could help more and she would be able to rest a bit better knowing that someone who understands her worries and concerns is looking out not only for her well being but her survivors too.
it is so challenge
But to go back to her 'wish'... I have wished that very thing myself on many occasions. It gets so tiring being the one who is constantly 'looking after' in one area/capacity or another. I don't think that you ever truly know who much a caregiver does until you have to be one. And that sad fantasy to have someone to have to look after me for a while ... sounds great... but....

but I know where the the balls would drop on that score. I know because in my day to day, my needs, my wishes go unnoticed every.single.day.

My survivors can remember many amazing things. Many MULTIPLE amazing things... they have a few balls in the air at once and not drop a single one... except that one.

me...

I feel some days like I should speak up, but then I know to do so will illicit hurt feelings -- no matter how loving and caring I try to come across.

Or it will be come a game of "well you never...", "thats not what I meant/said...", "I stopped saying/doing/helping because you said...." or the worst would be the listening and seeming to take me serious for a day or two and then drop that ball; and I am back to where I am now... hurting and feeling alone.

I wish we as caregivers were able to talk better about what we go through, but it is so challenging to do this... almost too challenging to open hurts or lines of communication on these issues as it feels like you are burdening others who already have their plate over flowing with their own stuff.  To tell others who don't understand BI survivors is almost as challenging as telling your survivor! It then becomes a came of "well thats just normal male behaviour ... "or "well my husband/son/dad {insert any female pronoun also} ...." and it becomes a great game of 'who has the best worst scenario" ...

So we bottle it up, push it down and keep on moving.

Until it hurts so much that you find yourself crying at songs, tv shows, memories ... anything that will evoke any kind of emotion and it comes out as tears.

My help comes from God and His Word... but somedays a real honest to goodness friend would NOT go amiss!

Sorry but not sorry for the whining... this blog is that friend...