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the sad demise of the care binder
King Boo
Posted: Wednesday, May 10, 2017 6:52 AM
Joined: 1/9/2012
Posts: 3525


I chose it because it was bright, fluorescent lime green.  Easy to locate if I misplaced it, buried below crayons and coloring books, later by middle school text books.  It was my guide, my control, when everything else was in chaos from a phone call.  That call would guide me to a crisis, sometimes 2 hours away, sometimes 30 minutes - always to a doctor, sometimes at "home", sometime to the ER.

The key to my organization in a world which overwhelmed both of us - me and Dad.   Diagnosis' blurred as did admission dates.  There was so much to keep track of.

Into the garbage can went my page of carefully stashed business cares - M.D's galore, lawyer, the care facilities I visited, the realtor who sold Dad's house,  the bad dentist who talked over my still aware Dad's head and made him cry. The good dentist who understood how I cried when my Dad handed me his broken, rotted teeth, from lack of care in his home.  Who was kind and patient with Dad, even when he threw up and pooped himself in the office.  And his not so kind receptionist, who pointedly told me the office was just cleaned last night.   good mixed with bad.  

The map to the hospital we used, with directions.  As many times as we were there, I never seemed to be able to remember how to get there.  Driving first with preschoolers and little kids, towards the end it was my daughter who could guide me with words and comfort.  "It's a turn at the next light, Mom.   Park here, it's closer to the ER."

 My father's signature on the in facility DNR flashes up at me before it descends into the bin.  Obtained before I had proxy.  He didn't understand it, but trusted me.  I am glad we didn't have to use it.  I had to do the thinking when he couldn't, the getting things done how they had to get done.  The responsibility of this illness can be soul eating if you let it.

Other papers went into a slim file.  It was time to remove these daily reminders of the dementia journey.  Down from 4 binders to 2 slender folders.  Goodbye lime binder, you served me well.  So, why am I upset, why do I need to write this post?  My time here has been done for a long time.


Jo C.
Posted: Wednesday, May 10, 2017 8:36 AM
Joined: 12/9/2011
Posts: 11999


 Sweet Boo, perhaps you are still saying goodbye; the last threads becoming thinner.   Lime binder held tangible memories of all your caring, all your advocacy and your strivings and many hours upon hours of all that advocacy and care encompassed.  That connection to the essence of our core is strong and does not vanish so easily.

Winnowing through the Lime was no small thing and all that it represented for those years.

My red binder went out, but there on the computer are pages and pages and pages of all the notes I kept on my mother regarding her care, especially her dread FTD behaviors, interventions, etc.

I had forgotten it was there until one day I saw it listed in the contents file.   I accessed the file and felt a sense of shock.  There was SO much and so much I had forgotten.  I had to log out, it was not a positive.  Yet; I did not delete.  Why was that I continue to wonder. 

The last very, very thin thread . . .  

J.


jfkoc
Posted: Wednesday, May 10, 2017 9:04 AM
Joined: 12/4/2011
Posts: 20125


King Boo....I understand your post and question but don't know the answer...just seems right to still be here.
George K
Posted: Wednesday, May 10, 2017 10:22 AM
Joined: 12/16/2011
Posts: 2820


Hey King Boo, I sorta know what you're saying.  What I'm trying to do is keep the memories, but change the adjectives I've been using for them; that is changing negatives into positives. 

In one of Bob Dylan's songs he sings something like, "My friends say 'It'll be alright', but I don't know what 'alright' means."   Neither do I.  So I just have to trust that everything that happens, happens for a reason and that everything is alright.  I have some friends who say, "Everything is exactly as it's supposed to be, or else it would be different".  I don't say anything in reply, but I think to myself: "Yeah, everything but my attitude."  It's just that I can't see the good right now.  I don't know if this makes any sense to anyone but me, but I feel a little  better now.  I guess I'm changing the 'bitter' into 'better'.


King Boo
Posted: Wednesday, May 10, 2017 11:46 AM
Joined: 1/9/2012
Posts: 3525


Thanks for taking the time to write, George K.  I know what you mean about "all right".  Everything changes with the journey.  The old "all right" is not the new "all right."  It's hard to recognize what this is. . . . .I think that turning bitter into better as you write, may be what it is all about.

It sure applies for me today.

Jo C, I too have those notes on the computer.   They will have their use one day, to show us how much we accomplished and bore and endured.  Funny how that fades in our memory with time.

Now that the garbage is picked up, the file folder in deep storage, it's done.  A few hours later, feeling better.

jfkoc, you are right, here still for some reason.  Nice to see you!  You are very helpful to many I see, these days.  Hope you are well.


Veterans kid
Posted: Thursday, May 11, 2017 12:37 AM
Joined: 10/17/2014
Posts: 1239


King Boo,

 You have every right to be here and to post whenever you feel like it. We are all in this journey together-maybe at different spots on the road… But the same road. I can relate to what you were going through.  When I was going through and shredding all of the VA documents, the medical records from the VA that I had requested-and that was a lot of paperwork to shred .

 It was a different sort of-I don't know-banality? All of those years, all the things that I did, and pushed for and advocated for-for my dad, to just shred them seemed… Odd.

 And yes, another form of grieving-for the loss of all that we did-it can almost seem like it was all in vain. But it wasn't-it's just an ad feeling-that's the best way I can explain it.

Turning bitter into better.  I love that! Doesn't hurt that I'm a fan of Dylan's either . It makes sense. It's a slow process and sometimes it's two steps forward and five steps back. Those intense waves of grief still wash over us-not as often  as they used to, but when they crash… They crashed hard. 

 I'm not on the board as much as I used to be, but I'm glad to see that you're still around-you have a lot of wonderful and valuable experience, and a way with words that has helped me and I'm sure many others along our journey. 

  Thank you for still sharing, and I'm sending you virtual hug's, pop tarts, Twinkies,  and the musical sound of many birds singing in the spring!!

 Always be VK ,

Julie 


King Boo
Posted: Thursday, May 11, 2017 7:59 AM
Joined: 1/9/2012
Posts: 3525


Thanks for your support, VK!  The banality of the paperwork, swapped off with intense emotion, describes it exactly.  We have a box of Poptarts in the house today, strawberry, so I do think I will indulge. . . .  . . wishing you a beautiful day, Julie.
bela
Posted: Tuesday, May 16, 2017 2:00 AM
Joined: 12/15/2011
Posts: 4122


Banality of paperwork.  I too have been sifting through the AD years of papers, scribbles and notes....it begins at ground zero when I was blindsided with no knowledge base. the insurance papers; banking, representative payee forms,  mom's word search papers, ...I have purged the duplicates but cannot dispose of the files entirely.  Each paper or scribbled note evokes memories.  Some memories remind me of the panic, worry ,confusion and exhaustion.  Others remind me of nicer things. 

Just cannot part with these yet  They were my life as was my mother.  

Similarly, I methodically have gone through mom's clothing.  I am amazed how one blouse can evoke a memory, a day, a week, an event, a moment~

We are the rememberers.

I will forever feel connected to you~

Perhaps we should schedule bi annual reunion weeks to ensure we reconnect and visit.  I would welcome this!  Twinkies and pop tarts.

Bela aka Suzi smariej@yahoo.com


MPSunshine
Posted: Tuesday, May 16, 2017 7:34 AM
Joined: 5/21/2016
Posts: 2010


Hi, King Boo, Although my dad has now been gone physically for almost eight months, there are still some things, the notebook where I recorded notes about him daily, his glasses, his slippers, that I think I possibly will never get rid of. I understand the feeling of wanting to weed through things in order to move on, but I believe I am still mourning his death. About the teeth, my dad didn't like dentists. He said all dentists existed to build additions to their mansions. Imagine my surprise that one of the "finds" in their house of over forty years was a tooth that he probably self-extracted. I think the "stuff" around the person is the second wave of mourning, so evocative it is of the person himself or herself. The scents, the rush of adrenaline, the crises averted, all of these experiences can come back with the sighting or handling of one of these things.  Kindest regards, Nadine aka MPSunshine
King Boo
Posted: Thursday, May 18, 2017 11:05 AM
Joined: 1/9/2012
Posts: 3525


Yes, Nadine, everything is evocative.  Early on, I either threw things out I shouldn't have, or boxed everything up, leaving quite an ongoing project.  I was dismayed at all the boxes in the garage.  Everything I got rid of, right on down to the rubber bands around old check books, was one less thing in this world to remind me of my parents.  Though, I was a little overwrought at everything then...... .

8 months is way too early to have to cope with alot.  Heck, here I am, 8 and 2 years later, still struggling, sometimes.

But, getting rid of some things, like the unecessary care binder, is now part of continuing onward.

Thanks for sharing.


acb10
Posted: Saturday, May 20, 2017 5:54 PM
Joined: 5/31/2014
Posts: 124


Mine was a yellow folder kept on top of the radiator shelf just inside the door.  In this folder were the weekly time sheets for the five home health aides that came to the house to care of Mum. They lovingly took care of my mother for about 80 hours per week - feeding her, bathing her, holding her hand.  How each one would be so proud when I came home from work "She let me wash her hair today"  or " She had 2 boosts AND a sweet potato".    I would look at the yellow folder after mum was gone, and just keep it there.  I finally disposed of it after 5 months only because I was having overseas guests come to stay in mum's apartment for the weekend.  But, I kept the time sheets - and still have them in a drawer.  Why? 

 

april


King Boo
Posted: Sunday, May 21, 2017 9:10 AM
Joined: 1/9/2012
Posts: 3525


I think.....it's evidence that they were.  Of what we did - insured good care.  Documents some of the agony of the decision maker - did we choose the correct caregivers?    Caregivers do get invested in their clients, and proudly show family the client's achievements.  The naysayers that say this is impossible.....there are some on caregivers that through the years refused to believe this was possible.

I kept some of the document - it's just a slim folder now.  I may need to remember, for some reason. . .it will refresh.  But it will be a backward glance, instead of a current chronic obsession.  Time marches on.....


George K
Posted: Sunday, May 21, 2017 10:27 AM
Joined: 12/16/2011
Posts: 2820


King Boo wrote:

...it will be a backward glance, instead of a current chronic obsession.  Time marches on.....

 

 

About a backward glance - there's a saying: "It's OK to look back, just don't stare."  I'm alive today, so I have to live in today if I want to be happy and at peace. 

About a chronic obsession - I'm alive today so I have to focus on today.  I did the absolute best I knew how to do in the past.  Now I can do the absolute best I know in the present time.

 



bela
Posted: Tuesday, May 23, 2017 11:57 PM
Joined: 12/15/2011
Posts: 4122


Time does march on whether we want it or not...


King Boo
Posted: Wednesday, May 24, 2017 8:02 AM
Joined: 1/9/2012
Posts: 3525


Ah, George K, great words to live by.  Thank you.
His Daughter
Posted: Saturday, June 24, 2017 8:54 AM
Joined: 6/25/2014
Posts: 2270


King Boo,

   Like VK, I'm not on the message board much these days.  But your post today really hit a spot with me.  It's already been a year and a half since I lost my dad, but those boxes of Daily Logs still sit in my spare bedroom.  I don't know what it is, but I can't get rid of them.  Today my goal was to make decisions and reclaim that space.  But I just know those boxes are destined for the attic.  

  I've convinced myself they are my protection, should my horrid siblings ever decide they want to sue me.  Yet in the back of my mind, I know they are, in a larger way, for me.  A written testament to the loving care he received from His Daughter.  All the hours of work and worry, all the good, and bad days.  All the proof of the daily journey we made together, as this awful disease took him, inch by inch, from me. 

   Maybe someday those files with find their final resting place in a trash can.                  Someday.........when I'm finally ready.          


KML
Posted: Thursday, July 6, 2017 5:09 PM
Joined: 11/30/2011
Posts: 2105


I had a binder, too.  It took me a while to go through it.  Copies of emails to doctors, test results, lots and lots of information.  I shredded them and I felt guilty for doing it.  Maybe I should have kept those things.  It was painful to look them over.  It was painful to let them go.  They were proof of what happened during 12 years of my life and my dad's life.  It was sad.  I remember everything though.

Those 12 years turned into who I was as a person, the strength, the sorrow, the endurance, the compassion.  It's been a bit difficult to know who I am now. 

George K - your words hit home, there's truth to them, now I just have to practice them.


King Boo
Posted: Saturday, July 8, 2017 2:13 PM
Joined: 1/9/2012
Posts: 3525


I imagine that those logs, HisDaughter, could indeed be needed for your situation, which was pretty horrendous from what you have written.  Store them, they don't take up too much room and could be invaluable in the attic.  Years from now, when you encounter them again, you will know if you still need them.

The care binder is gone, the documents shredded before my eyes at a community event (near Dad's nursing home, coincidentally).  Very final, somewhat cathartic.

I did, however, keep my monthly planners, for if ever the extent of what I did and had to do is needed, there it will be, the painful unfolding of events from Mom's illness to Dad's death.  One day they too will go, but for now, reside, hidden from daily reminder, in the basement.

Onward we go, all of us.


jfkoc
Posted: Saturday, July 8, 2017 6:17 PM
Joined: 12/4/2011
Posts: 20125


I got rid of the notes but kept the med schedules. I was able to use them to help someone here recently. Strange.
Iris L.
Posted: Wednesday, August 16, 2017 11:07 PM
Joined: 12/15/2011
Posts: 17452


I have a filing box of notes and I really don't know what else because I have not looked inside it since.  My mom passed away 25 years ago today.  She did not die of AD, but from lung cancer.  She was lucid on the day she died, although she was very weak.  I really thought she was getting better, and told her so, but she passed that night.  I think it's time I looked inside that box.  I'm glad to see that other daughters are able to release their caregiving paperwork.


Iris L.


LouiseAM80
Posted: Saturday, August 19, 2017 9:56 AM
Joined: 6/8/2017
Posts: 105


This journey definitely changes you. I have the files and journal of my moms care. I am not ready to go through all her files right now and I have all her files that she brought up  here with her. 

I may keep the journal of notes from the nursing home.


His Daughter
Posted: Friday, November 17, 2017 10:18 AM
Joined: 6/25/2014
Posts: 2270


I know it's been awhile, but here it is.  Yep all those many boxes of files went into the attic. the daily logs, the financial records, medical records....everything.  I honestly just feel better knowing they are there.  I don't care if they sit there till I die.  They are also proof that everything I wrote in my book was 100% accurate.  And I'll admit, I still feel the protection from all those records, even though I haven't heard a word from my crappy siblings since they got their final estate checks.  (Certainly hoping I never will hear a word from them again.) 

Now if I could just get to all those boxes of things in the basement, small items of my parents life and home, that I just emotionally couldn't part with when the Salvation Army truck pulled up.    Even though these were all things I didn't want or need, and didn't sell at the Estate sale.   I just didn't fight it at the time.  (Who in the world need a silver plate tea service? I sure didn't/don't.  But I had that photo in my mind of my parents standing in front of it as their 25 wedding anniversary)  

But I'm coming up on two years and it's time to get it done.  I need my space back!!! Time to purge.   HELP!  


King Boo
Posted: Saturday, November 25, 2017 9:06 AM
Joined: 1/9/2012
Posts: 3525


Good morning, His Daughter,

This is a hard one to tackle, and I think, a process.  Clutter is not good for the soul, and a project weighing on us is a stressor. . .but if we are too ruthless, once the stuff is gone, it is gone forever.  Which, isn't the end of the world, because, as they say, you can't take it with you. . .but it is a tangled mess of emotions.  I think one has to be beyond the point where giving the item away is one less object of evidence that they lived. Otherwise, it is agony.

I kind of did "tiered" sorting.  It ended up being a recurring project, with at least 3 passes of sort through, (over the years-8 for first parent, 2.5 for second)  but I guess I am glad I did it that way.  Some cookware has thus ended up being useful and of some comfort (cooking my kids pancakes in the same cast iron skillet as when I was little), whereas initially it was headed to goodwill.  Old corning ware, some went, a few useful pieces kept for the holidays.  I suppose I used a little of the "does it bring joy" question with regard to keeping something.  A few legacy items got packed away, just because I couldn't quite break tradition.

The silver tea service?  Awesome to keep that esp. with the photo of your parents proudly standing in front of it.  It won't occupy much space in the attic, or packed away for once a year use.  

I am 'mostly' done, though still awaiting me in the garage are a few boxes. . . .they'll be gone this summer. At this point, they are annoyance more than sentiment. . .a helpful stage to be in.


KML
Posted: Tuesday, November 28, 2017 1:21 PM
Joined: 11/30/2011
Posts: 2105


I have things of my parents, too.  I haven't done much in the way of sorting and giving away.  I don't have much space to store, my husband has taken every bit of space with his problem of collecting.

I have had a few pieces of furniture restored, my mom's hope chest which is huge, but I can't seem to part with it.  A chair from my father's mother, had that restored.  A few other smaller tables, one I had restored and gave to my daughter, my mom kept her nail polish and things in it.

I have the set of china that I bought for my mom when I got my first job.  I don't think I will ever use it very often, but there you have it, sentiment.  I have my mom's silverware set, I don't think I will use it, but feels wrong to give it away.

My sibling dropped off all of my mom's photo albums, including the photo's of sibling and her family.  Along with throwing me to the side, sibling doesn't want any family photos whatsoever.  I can't bring myself to throw them away.  There are about 15 albums. 

I sometimes think I should have kept all of the papers related to my father's care and health.  My sibling has made me feel that what I did was insignificant, but it wasn't, I had proof, I had the letters to doctors, his results, all instructions, everything.  Sometimes, when I'm feeling low, I think about what my sibling has said to me, minimizing everything I ever did and I wish I had all of those papers as a reminder to myself, that I spent my entire 50's and a bit of my 60's caring for my father.

I know what I did and I have that in my heart, I guess it bothers me the picture my sibling has painted of me, the dismissal of me.  This hasn't gotten any easier.