last week ...

last week daddy had been sick. I ad gotten a phone call from the care home saying he had a very high fever and they assumed he had aspirated which was the cause it not only the fever but the raspy, rattling chest noise. Each time he gets sick I am preparing myself for the end of this journey that we have been on with him for the last 24 years. I pray that his pain and discomfort are slight and that if it be ...it is quick, for all involved (dad, the care home aides that work with him and us... me). It is an exhausting time when he is sick, because I feel such pressure being the only one to do anything with him. I don't call any family.. they all live far away and only one (my aunt - daddy youngest sister) that keeps in contact with me. so it sits with me. I wrote this last week while sitting ... once again, with daddy. 

He is better now (or at least he has had no fever) and the next few days again will tell if he is actually "better better" or if there will be another round of meds, if the chest has cleared... until the next time he aspirates or an illness goes through the care home.

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Once again I am sitting here listening to your breathing, so rough and ragged… your bed humming from the weight of you on the mattress, a Frank Sinatra movie on the tv and the day to day noises of the care home. Your spirits are a bit higher than they have been other times but you are still sick.

Yesterday afternoon I had a call from the care home that you were not well. You had a high temperature and your breathing was raspy. They think you possibly aspirated so there was a call to the doctor and medications ordered as well as the nebulizer. So we wait to see what the meds will do. And this morning when  I got here to hear your fever was down and you ate a bit at breakfast, so we sat, I read the bible to you, I prayed for you and I sat and we watched an old Dean Stockwell movie and you look so frail and tired.

Now it is afternoon and you are back to bed (you look exhausted). I tried to get you to sing a bit (something that you love to do) and you didn’t want to. You said you wanted to sleep for a while. 

So here I sit…

listening… 

praying...

remembering...

Reminiscing in my head. Thinking of all the times we were riding in the semi’s, eating at McDonald’s (and me ordering those extra thick chocolate milkshakes that you hated to hear me try to suck up!), the songs we would sing, the driving lessons, the shopping mall adventures, the laughing over the burnt pudding and fish cakes. 

My memories are all so vivd, and yet the one thing I cannot remember for the life of me is your voice. 

I cant hear your laughter and calling me “jo”… I wish I could. I would love to hear you roll over and say to me right now “Jo, lets sing some Merle Haggard.” Or  “lets go for a drive and see what we can find.” I can't hear you and haven't been able to for years and I miss that.  I can't wait until we are in heaven and we can talk... two sided conversations! 

I love you, daddy... 

I miss you...

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...

maybe this is my epiphany...

but then again, how can it be an epiphany if I have always known it?


So daddy is still sick. Not getting and worse and yet not any better either...
On Saturday the care home sent him up to the hospital to see a doctor and he was admitted and will be there for a few days. The medical staff at both the hospital and the care home are all confused as to why he is on medication, starts to get better then gets sick again. So now he is in the hospital and is getting his medication via IV.
The resident that saw him last night said (after looking at his file) his pneumonia would start to get better in his right lung then his left would get it; then as it got better it would go into his right lung. Totally not making sense. So th hope is that the IV meds will work and wipe it out.
Dennis and I were with him yesterday at the hospital until they got him settled in and the IV inserted - so we could help keep daddy calm-ish and he was ready to go to sleep. Then I arrived this morning and spent a good part of the day with him. He was white, unusually quiet and didn’t eat much... but he DID eat. The nurses suggested to get dad’s chair sent to the hospital so we got it and had him sitting up in it for a few hours in hopes of breaking the chest issues. Time will tell.

I have really been struggling with this bout of sickness with Daddy. He looks so tired and so small. He weighs almost nothing 60.2kg (about 132lbs)and he is 6’2”. He is literally a rack of bones. My daddy was always really thin but not like this. His appetite has decreased so much of late and he is wasting away before my eyes. He doesn’t talk a whole lot but he will sing bits and pieces of old songs that he loved — but only if he is in the right mood it seems. Today was not one of those moods or days. My prayer has been {and always has been} that if it is God’s will to take Daddy home, I can live with that. But there is enormous guilt that has gone along with that prayer. I have had friends tell me to “enjoy every minute with him while I have him.” “Don’t be so selfish to pray like that.” And other things, but I know my dad didn’t want to live like this. He told me about a year and a half before this happened, what i was to do and what he wanted and didn’t want - but that doesn’t stop the guilt.
Then this morningI was spreading my bible and God led me to a devotion by Carol L. Baldwin called “Trust and Confidence” I was based on Matthew 26:39

Going a little farther, he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” 

It made me think that maybe I am looking at this all wrong. Maybe I am to be rejoicing  in this trial with Daddy and his entire injury (not just the pneumonia) Maybe He is granting me time to appreciate again what I have in the Daddy I have left now... and not mourn the man I lost 22 years ago.
the further readings I read were:
1Peter 1:6-7
6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.


1Peter 4:12-13
12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. 13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Not so much that I am ‘suffering’ for being a Christian but in that I need to learn to lean on Him and trust in Him way more than I do. When I look back on the things we have gone through since daddy's accident in 1996 -- right up to recently -- I can see when times that I had viewed as challenges {or even negative issues} occurred actually really helped me in a time later o down the line. Now I have known this and think about it quite frequently of how maybe Daddy 'accident' {choices really} really an truly helped me to get through everything we have gone through with our Sammi. I don't know how I would have even began to grasp the enormity of Sam's accident if I hadn't have had my experiences with Daddy first.

So I will continue to pray for God's will through it all. And try to focus on Him and what I am supposed to be taking away format or learning from it! A daily reminder of this will be in my heart, in my mind and on my fridge:

Trust in the Lord with all your heart

    and lean not on your own understanding;

 

in all your ways submit to him,

    and he will make your paths straight

Proverbs 3:5-6NIV

Sometimes people suck ...

What would YOU say if you found out that someone you loved and is in someone else's care and the one you love has been sick for over three weeks, has been to the local hospital for chest X-rays and is now going for a second set?

This is part of this other persons {to be fair there could be more than one person who has this job to do} job, to keep family {in my case ... only me} updated on your loved ones health issues and the like.

I got a phone message yesterday afternoon/evening from th care home where my daddy is taken care of and lives, asking if I could call them back regarding some,thing with my daddy. I didn't get my message until this morning and I called right away. I was informed that my daddy is going to the hospital on Monday morning for a second chest X-ray because his pneumonia doesn't seem to be getting better....

Excuse me?

His pneumonia?

Second chest X-ray ....

I told the woman I had not been informed of the first X-ray OR his pneumonia and we had just been in to visit last week and he didnt seem to be or sound sick.

She seemed quite shocked to hear this.

Like I said earlier, I am the ONLY person who needs to be called when things happpen.
I mean they call me about:

- holes in his socks and what should they do about them.
- missing shavers from his bathroom - would I know where they are?
- no batteries for a clock in his room.
- if I am shopping he could do with a new pillow.

 Y'all get the idea.

For the most part, I absolutely love where daddy is. He gets fantastic care but wonderful staff.
But sometimes when it comes to big ticket items {insert almost any issue here} they really drop the ball. This is NOT the first time this has occurred either!

Dennis and I were on our way out today to do some grocery shopping and whatnot, so we stopped in to see daddy, and his chest was quite rattley with lots of moistness in it, so I am glad he's going to get another X-ray. I AMA little concerned about the medications they have Him on not working, but he is in Gods care and He knows what is needed to get daddy on the mend, if that's His will.

UPDATE:
Daddy went for X-rays yesterday and the pneumonia is definitely back and more in his right lung. SO a new and stronger medication and a nebulizer every 2 days (because the medication can do damage to his kidneys -- it never rains but pours right!)

We will be back on Wednesday to check in and see how he's doing.

Daddy just looked so tired and small. How can someone who was such a giant in my life be reduced to looking so small?

like it was yesterday and yet it was 21 years ago...

Today marks the day -- 21years ago -- when at 10pm i received a phone call that my daddy had been beaten up and may not make the night. my daddy was taken from me by a selfish man and his girl friend. Today is the day that I not only lost my daddy (in a purely emotional and mental way) but my kids lost the most amazing Papa. It is so hard to believe that it has been 21years! It seems like just yesterday he was calling me to tell me a joke or just to 'yak'.
My daddy was a  man who would give you the last dollar he had to help you out. He would phone you to make you laugh to cheer you up or to see how things were. He would buy lotto tickets and give them all to you and sincerely hope you would win big! Family was everything to my dad - he would pick me up for a weekend and we would drive to Muskokas to visit with my gramps and gran and aunts and cousins. He would smile and laugh, hugging us, giving us a bit of money for pops and treats.
He was a trucker, who spent many hours and days on the road, hauling semi's from one end of the country to the other. He hauled cattle and other freight to all corners! He was maybe not the best ever husband but he sure was an awesome daddy.
We would spend hours singing to all the tapes in his truck as we drove the Yellowhead highway through Canada and then the TansCanada once it was done. We ate copious amounts of kielbasa and ritz crackers and cheese on the road. We stopped at all the best truck stops for coffee, pie, dinner, lunch, breakfast and pee breaks. We would laugh talking to other truckers on the CB radio and daddy would be reminding them every so often that his little girl was listening so please watch the language (most of the truckers complied and would talk to  me about school and riding with daddy).





I miss him ....
every
single.
day.
and there will never be another 'him'.

He was so handsome and it used to drive me crazy when he would come to pick me up at school and girls would giggle and gawk at him...but only a little because I was so proud to him as my daddy. He would take me shopping for clothes and tease me about bras and new styles, but he was so much fun to be with, everything we did was a crazy, fun adventure.
i remember once getting caught swearing (I said sh!t when I was trying to make something for him and mom) and that night as we drove to pick up my mom from work he said' you know Jo, I heard what you said earlier and Iim pretty disappointed that you would choose to use that language' (even though he used it), I remember being so heart broken and disappointed in my self to have disappointed him and those words were all it took to make me want to try to be better for him to be proud of me.
He taught me a bit about Jesus growing up and i know he believed in Him. This makes me very happy to know!

When I had our first child, Joshua, on June 19 (Fathers Day) we called him from the hospital and he cried. He showed up at our house for the September long weekend to see not only Joshua be dedicated to God, but to see Dennis and I both baptized.

When our second son Sam was born on dec 16, 1995, Daddy showed up on my doorstep with a car loaded with gifts for the boys on Dec 22 and he stayed until 27 then headed back to Alberta go to work. He head Sammi and beamed with smiles! He was so proud to have a baby Holmes (sam's middle name). He played with Joshua for hours and wouldn't let me do anything for the boys that was usually my job (diapers, feeding meals, etc.) He took over and helped as if he lived with a hundred babies all the time!

That day he left for home, was the last day I ever saw my dad in person. He came running back into the house after he got in his car and gave me his favourite jean jacket and told me to look after it for him....
and I have.


I can't begin to describe the empty hole left by him. How my kids will never know how amazing he was, how funny, how generous, how caring. Ask I can do it tell stories and show pictures... because the man that is left is nothing.... and I mean NOTHING like my daddy.





I miss you Daddy.

One day we will be together again in heaven...


I know it;


I can't wait.

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....

{just please don't} say anything

It is that time of year again when the Christmas rush is upon us. There are carols being sung, trees decorated, nativity scene set out, food being eaten, cookies baked ... basically memories being made. And once again I am at a time where my heart is aching, tears are always just there. 

I tried to get into a Christmas-y mood early and set up my Nativity scenes, set the tree up, baked some cookies and had carols and Christmas songs going in November this year --- which is a HUGE change for me. I have been fighting like mad to stay cheery and in what most people would call a Christmas mood. But it is now crashing down around me and I want to sit and cry, scream, crawl into bed and pull those covers over my head until this whole time is over. 

I know every year I struggle and this year is no different -- even with the head start to get into  the Christmas cheer before the Bah-humbugs got me.

But a few weeks ago I found some wonderful pictures of my dad with Josh and Sam just after Sam was born -- this was also the last Christmas (1995) I had with Daddy and  sadly the last time I saw him in person, before SHE and her boyfriend decided to so violently beat him (that was in August of 1996).  I posted these pictures on FaceBook and made a comment to the effect of that as much as I loved finding these pics I wish there were more of him and I together too. This brought comments of "just be glad you still have him" and "at least you are blessed to have him in your life still" and the like. I am sure they thought they were trying to help or that they felt they knew what they were talking about...

But I wanted to scream and rant that I dont have HIM! My dad was taken from me that fateful August afternoon when she and her boyfriend decided to take my Dad's life in their hands. The two of them took my dad from me. They took my childrens grandfather from them. They were able to beat him senseless, cause him to slip into a coma and walk away. Scott free. They both are walking free in the world able to enjoy life and their children and possibly grandchildren....

But what really gets me is that people minimalize my feelings of loss and grief with the assumption that my dad is still 'here'. 

Let me get this out there and set the record straight please.... not just for me but for others who may be living with this too! (I surely cannot be the ONLY one in the world)

When I go to visit Daddy at the PCH, it is only his body that I am visiting. The man in the wheelchair  is just the shell of the man who was my Dad. Gone is the man who had a wicked sense of style, a fabulous sense of humour. His laughing killer blue eyes would literally twinkle when he would tease me. They would dance when he would talk about his grand babies. Daddy's enormous, generous heart is not there. His love for semi's, family and "corny-make-you-cry" country songs is gone. Gone is my Daddy's love for life, singing and playing around with his guitar.

I know I can share all this through my with my kids -- and I truly hope I do, but the hard part is having to tell thim this with him sitting there ignoring me, not knowing me or even worse swearing obscenities at me or swearing very inappropriate things to me. When family/friends (and there arent many) come to see him or talk to him on the phone they are not graced with this kind of behaviour -- so they 'see'(or hear) the best and to be honest, I think Dad probably DOES know them and have memories of them. Dad may know I am "jodi" but the fact that I am HIS daughter is completely and utterly lost on him.

SHE and her boyfriend took not only my dad from us but they took my memories with him.... with him. I am an only child, of divorced parents and my Daddy was my 'bestie'. He and I would spend time in the trucks, shopping, watching tv, playing with toys, visiting family -- it never mattered what we did as long as we were together. I am an only child and I have no one to help me to remember times with Dad. I have no one to share those "Oh remember when we ..." or "Do you remember that time that ..." moments. And even sadder the old memories are now being replaced with the vulgarity he spews at me from time to time (and this is getting to be more and more frequent) and the fact that I am not who I should be to him anymore. His daughter, his partner in crime teasing my gran or my aunt, the one he would phone from work to share a joke with. I have no one to share the work load with (other than Dennis), guilt resides where love should when I cant get to see him and he has had no visitors for a few weeks. Guilt sits where love should when I tell people that my Dad died that day when he was beaten and I am told by others "be happy he is still alive". People who never knew my Dad or knew how our relationship was. How much I loved him and he loved me. How much we talked and laughed in a phone call, or how much was never said but felt as we would sit and watch an old movie or go for a coffee. I tell him now that I love him and his response is "i love you' but then it is his response to everyone from the nurses aid to one of the maintenance guys,  whether they say it to him or not. 

I dont know if I will ever get to fully grieve, because of  these ideas that I am "lucky" to have him. I WAS very lucky to have him as my Daddy but  now he is gone and I am left with his shell and a huge empty hole in my heart where he used to be. 

Ambiguous loss sucks and what really sucks is that no one understands(what I live with is the same as with someone who is caregiving someone with Alzheimers or Dementia)... and the huge irony in this all is that I am living the same issues that my survivors are with the need for education of what we are living. 

If in your travels you happen to encounter someone who may be struggling (or they may not 'seem' to be because they are working hard to keep it under wraps) with loss or grief, please choose your words carefully. You never know what hurts or holes they are trying to heal or deal with. And when it comes to loss you just never know... there are many, many kinds... 

And if you ARE struggling with this horrible ambiguous loss issue,  I would be interested to know how you handle it whether it be graciously or not. Do you have a standard go to answer for people if they happen to belittle your feelings or do you go from the cuff? What do YOU do?