HAPPY HAPPY JOY JOY

http://nicktoons.nick.com/videos/clip/happy-happy-joy-joy.html





I love watching how happy my brother is! It wasn't too long ago that he was despondent, angry, depressed and in major discomfort. He wasn't able to be himself. Happy Happy filled with Joy Joy!


It took over 4 years to bring him to this place with ALOT of working with services, doctors, replacing service providers and case managers and rehab aides. Finally, found those that work well for Paul and after fine tuning everything last February and the subsequent weekly, monthly follow through he is where he needs to be and back to himself.


Yes, sadly there is a change. His TBI is changing him. He is getting older and all the scar tissue is causing his ability to remember short term experiences less and less. Plus, I noticed that he is having a difficult time with connecting to his long-term memory.


Basically, it means simply that we need to be more patient and repetitive with him.


His overall personality has not changed and he is back to being actively engaged in his life and exudes so much joy.


We all can breathe a bit and thank God for blessing my brother and helping his service providers in taking such fantastic care of Paul.


Truly, Truly I am filled with HAPPY HAPPY JOY JOY as well!!!! (must run in the family)

Things to Do Before Semi-Annual Meeting

 I Love the morning of the meetings!

WHY? (you ask)

Because it is when I have uninterrupted time to simply get my head organized for the meeting and some necessary downtime and catchup.

Life is important and I must live in mine. My life without Paul involved. It is similar to having or living in two separate worlds.

So the drive over allows me the time to transition and get my head back into guardianship mode and out of my life.

I need the separation time.

Come the morning of the meeting, I am ready to interact and live this world for the day.

Catching up on what has been going on with Paul and his care via emails, posted care notes, and doctor's visits is completed after breakfast and where the only noise is the hum of the coolers in the "breakfast nook" or the sound of the TV in the background.



One thing I learned in all the meetings and interactions is that I am more able to address those items we cover at these meetings and remember to follow through on those items we covered at the previous one by having this separation and me time before.

It also opens opportunities for sharing.

The thing I LOVE the most is that I get an opportunity to share about "The Standley Foundation for Traumatic Brain Injury"! Getting the word out about a great organization that I am creating for families, caregivers and TBI victims is so important and since I am already thinking about Paul it comes very naturally!!!

And sometimes I simply sit back, breathe and twiddle my thumbs.

Wah-LAH!

I simply love when, after being persistent, putting the time into making contacts and follow through, how wonderfully things come together for my brother and his services!

My time in Missoula last week was very productive. The Semi-Annual meeting between Case Management, Opportunity Resources Home Services, the nurses involved, Paul and myself went very well.

Communication has gotten to the point that everyone was ready to move forward for the next 6 months with Paul's care and life.

It was absolutely wonderful to have the Case Manager actually ask Paul what he wants to see happen with his services. Paul loves the Msla Osprey and Mavericks (Baseball) for the Summer and the Grizzly teams come Fall. He also has two main care givers that are extremely active and communicate with Paul about what he wants. I saw an improvement in his ability to speak and form words. This, sadly, was a frustrating thing for Paul and those working with him over the past couple years. He was losing the ability to speak complex words with more than one syllable. So he resorted to one syllable words such as:

"Just Kill Me!"---in actuality he was not happy with his old, rickety and unstable wheelchair and it took 8 months to get a new one...since end of February this particular comment is no more. But he said this to try and communicate with his caregivers that he was scared and worried about the old chair but couldn't get them to understand so he shocked them into talking more about it.

or

"Not sure"---when he doesn't understand the question(because it is too long...too many words or ideas)...this is more the care givers issue...I have coached them when I see them and on Therap as to how to ask simple, clear questions that require less complex thinking but gives Paul a couple choices...then repeat so he understands. This assists him in being able to make those day to day decisions he needs to make as a man.

or

"I'm scared"---Ok now this one upset me the most. Somehow, during the year I was not the active guardian my brother became afraid of walking, talking, doing something new, and simply afraid to live his life.
My superhero brother who conquered a wreck and injuries that altered his life to the extreme but still had the attitude that he would conquer all and his life wouldn't be limited, now was.

I account this to too many changes in personnel and the ability to take care of those basic life-care issues. Having family members freaking out (in front of Paul) because the services were not doing their job consistently or to the needs of the client, only tended to freak him out.

Sometimes, as we try to compensate for Paul's TBI, we over communicate and this confuses him to the point that he feels what you are feeling (frustration, fear, concern, sadness etc) and after several months of this happening he simply shut down and accepted the wheelchair and limited life...although it was not what he wanted or needed. He acted out more and got more violent and withdrawn.

I saw this behavior in February and even a bit in April.

However!!!!!

Last week I saw my brother re-emerge into his life! Working diligently with his case manager, ORI supervisors and staff, and the day services staff Paul was brought back into his life decisions.

It began with organizing his pantry and establishing a menu plan for his meals, where Paul decides what he wants to eat. (very simple)

Then working with his day to day staff on establishing boundaries in their interactions and helping them understand his TBI and how it affects him. This helps them understand Paul more. Meta and Gene are fantastic! They love their job and truly feel Paul needs to get out and interact in activities outside of ORI day services and his apartment. He gets to go to art shows, car shows, movies, pool therapy, bowling, dinner with his friend Micki, and when home they actually play the games he has on hand. (keeps his brain connecting long term memory to the here and now)

As I encouraged and coached the caregivers, I saw them take the reigns and establish some pretty amazing relationships with Paul. They have grown and to actually see them with a more pro-active approach to Paul's caregiving needs, (considering these type of services tend towards reactive positions)...this is simply amazing. As his sister (and guardian) I am filled with gratitude for the gift my brother is and how his services are a wonderful gift to him.

It is so sweet and inspiring to see my brother again...after 4 years of hell, confusion, fear, worry and fighting every time I went to Missoula or dealt with those entities working with my brother and his care...not to mention fights with the other guardians over what is best for Paul.

I am very thankful to my Savior for the ability to forgive and a Father in Heaven who understands us and still loves us...in-spite of our imperfections. I have grown through this process although it was very, very painful at times. Learning to forgive and communicate more effectively with compassion (becoming more like the Savior) humbled my fear and frustration and allowed me to be patient so when I needed to step back in I could from a better place. Tongue in cheek...The blessings just keep coming (lol actually it is true). The Lord allows us to make mistakes so we can recognize our weaknesses so HE can make them strong. Again, isn't it amazing this gift we call life. In this case my brother's life...a true gift from God.

Follow through to INFINITY and Beyond!

One thing I keep coming back to is how important following through with those who take care of our loved ones is for consistent efforts in their care.

Fact is that in the Caregiver Industry "Turn Over" is frequent and quick!

You just get the current individuals trained and know who they are and BAM!!!! they disappear and a whole new set of caregivers become involved.

Within a matter of a week or even a few days those you met are no longer caring for your loved one.

Thankfully, I have found that the supervisors change as well, however it is at a slower rate. This is where being able to FOLLOW UP and keeping in the loop is so important.

Being persistent is NOT being a pest or even micromanaging anything. It is simply the best way to insure that all entities involved with my brother are in the know and that Paul's care is consistent with attention placed on those items needing more concern at the moment.

For ex: I noticed that my brother's teeth were full of plaque and was pretty

            sure he hadn't seen a dentist since the new company took over about

           18 months ago...probably been at least two years. I had the medical

           tech's(aka scheduler) phone number and texted him a couple times

           to see about getting this taken care of as well as getting Paul into his

           PCP sooner for one of his medical concern follow-ups. I heard nothing

           for the next week and a half. I (being persistent) sent him an email.

           It took two days for him to respond but he did and yes he took Paul

           to the dentist and will be taking him to get a cavity filled this next

           week; plus, he will be in with his PCP a week earlier so the

           current issues with his hemorrhoids would be addressed.

                               (I know TMI but hey it is what it is.)

Family members who are involved in their loved one's care are vital to the type of care given, the quality of the care, and the consistency in its delivery.

We as family members and guardians have a unique and privileged position of assisting with the overall quality of life for our family member who has TBI.

We NEVER need to feel like we are intruding or are out of line.

We are the lifeline for the services as well as for our brother, father, sister, mother, grandmother, grandfather, son, daughter, husband, or wife.

Thus, FOLLOW through on our part is very, very important. As Buzz Lightyear, from Disney-Pixar's Toy Story, always says...."To Infinity and Beyond!"

YES! It IS that IMPORTANT!!!

 

My First Mate!

Our Ship is A Float! or maybe it's more like "ThaRR She Blows!!!!"

Had the first, of many, meeting with Paul's new case manager. As she said she would, we met via phone. Mom was not able to make it on the call nor was Paul's wrap around services coordinator, however, it was simply great to be able to visit one on one and feel each other out.

It has taken over a decade to finally get a Case Manager as competent and Pro-Active as Laura (one of the very first case managers and nurses that worked with Paul and the family from the beginning). Cris reminds me an awful lot of Laura. This is good. . . very good.

I haven't a clue who the captain here is but it doesn't matter as I feel this is a real team player with the best interest of doing her job and working with the family in order to make sure Paul is taken care of and remains independent and able to live the life he desires.

It has been a long, long, long time since I felt I could actually trust Paul's Case management team. Don't mistake me he has always had a team that did what they felt was best for Paul, however, they haven't always been as open and forthcoming with the family on matters that they needed to be. This caused a few problems over the years.

There were days even months that I used Charlie Brown's famous "Good Grief" as I tried to get communications flowing and actions moving where Paul needed them to go with every "involved" party.

I have learned that working with these entities and negotiating the rough patches was all about building trust and communication. Honesty was pivotal and integrity in actions and follow through a necessity from everyone. Family led the way and honestly the role we play is a small part, we are the captain or the director however his services were the oarsmen and first mates and wheel hands and sail keepers and lookouts.

I am very happy that all is working as it needs and we will always negotiate the rough patches. No other way. Cris is my partner, the family's partner just as are his wrap around service people. We are all on the same boat. Hopefully, I won't go chasing "Moby Dick" as Ahab did. Being swallowed by a gigantic white whale is NOT my idea of fun. (wink wink)

Finally!

It has taken a change in the case manager (not my doing) in order for a new/old approach to be included in the planning for Paul and his services. Several years ago I set up a phone meeting between Paul's then case manager and his care services coordinator and aid every two months.
These were not too bad, however, Paul's services were unavailable or something came up and soon the meetings were never followed through with...as witnessed in Paul's life by the family having to remove these services and throw a huge fit.



Now, with Cris, she is more organized and actually not wore out as she cares to put forth the effort and so she initiated a phone call one a month between Mom, Amy (Coordinator) the nurse, Teresa, myself and Cris. I like monthly followup visits as then we can be more pro-active and less reactive. This actually addresses issues when they are small and minute compared to the ones that are crazy and having to solve an issue that has grown to a problem involving health and safety issues needing fixed now. Think I am going to like Cris.



Hopefully Cris will not be looking like Cavin's mom. LOL

Morning of

Am I prepared? Do I have everything I need? Am I calm, cool, collected?

These are my thoughts once I am up and about this morning.

I have been a part of these meetings for over 10 years. Honestly, until the family became legal guardians these meetings were not something we were invited to or told about. So when the first one happened it was a strange, awe-filled moment. I was a child in a big world of "people" who thought they knew everything and were there to include us, however, no one honestly knew what role the family was to play.

I hurried up and began learning about guardianship and the role of the family.

The services were fantastic in that they encouraged us to be involved at the meetings...and even in Paul's day to day care. Sounds great right?

LOL (if only it were reality)



The services always acted like they wanted us involved and gave lip-service to the "family" as they knew we were not going to be there every single day. We were told and heard only what they wanted us to hear.

As Paul's ability to walk and take care of himself came into a more prominent state and I became the main contact person, things began to change.

They absolutely hated it! They were being watched now and so they needed to do their jobs...period.

I worked with them, Mom worked with them, Cam worked with them and finally even the lil sister Stacey (aka Anastasia) worked with them. By this time the services were struggling in knowing how to work with more than one interested party (aka guardian).

                   

        


 They freaked.



They were no longer in charge. The Family was. We have never tried to force the fact but there have been times we needed to make necessary changes in management and care-givers. We also pushed a more proactive...less reactive stance. It is still a work in progress.



I think about all this as I get ready for today's meeting. More changes are coming and I know for a fact his services will say they are happy and agreeable however I know they will struggle.

 

 

  So how do I bring them to the "light"?

 

THAT, my friends, is another story which begins today at the meeting.

 

A dropped ball means a missed opportunity

Finally received the records from the Neurologist and Physiatrist that have been working with Paul since August 30, 2013.  What I found was very interesting. Several key steps have been missed due to no follow through with getting these records to Paul's services and PCP in Missoula.
            --Seeing an Orthopedic Surgeon
            --Progressive Physical therapy
            --No mention that Paul was to remain in the wheelchair in fact...the Physiatrist felt that Paul would be back to using the walker within a year and a half...this has NOT happened due to this particular ball being dropped...

Who's to blame...no blame...simple accountability needed.

The family that were doing the visits with these doctors and "managing" Paul's care and services is needing to take full responsibility and accountability for not ensuring that these very informative and useful records were sent to Paul's doctor, physical therapist and services.

OK...you're right! I want to scream!!!!! My mom and little sister dropped the ball big time! They thought that my lil sister could remember everything the doctors told her in Kalispell. Oh and her arrogance that she would handle Paul's services and that they will do as they are told is absolutely unbelievable!!! Mom let her do it!

No one was talking to me for I would have asked if they made sure to get these records released to Paul's PCP, PT and services. But NOOOOOOooooooooooo I was not to be consulted and when I tried to find out what was going on she refused to talk to me. I was "micromanaging" and "controlling".

Fact: His services...none of them...can operate or put into effect anything that the doctors say without prescriptions and referrals and yes the records of Paul's visits. No service, that deal with clients in Paul's situation or any situation for that matter, can move forward with care without specific paperwork and formalities. She thought she could say it and it would be so...is she Captain Jean luc Piccard or Captain James T Kirk!!???  Even they knew there were proper and important protocols to follow.

Sadly, her need to show me, that she knew better than me when handling Paul's care, is what caused this huge deviation from the doctors' referrals to his care.

Upside is that Paul is ok.
Downside is that Paul will most likely never get out of the wheelchair...

Tangled web

I love miscommunication. It ALWAYS happens when dealing with care services. Throw in a few spontaneous incidents between the "sporadic bull in a china hut" sister and a "non-native English speaking" caregiver and all of a sudden all hell breaks loose within his services.

I knew I should have talked with Mary (supervisor) after talking with the coordinator over Anastasia's visit with Josie(caregiver) about my sister's couch and art canvas. Heather(coordinator) talked with Mary and this is what Mary heard. 'Anastasia will be taking the couch she brought to Paul's apartment. If she takes the love-seat, which was bought by Paul, then this was not to happen and a call to Adult Protective Services was in order?'

Mary sent this to everyone in Paul's Service planning team, including me.

Of course I had to respond!

My sister has not learned that she needs to make arrangements with his caregivers for adding or taking away things that are in Paul's apartment. These people are there, usually, to protect Paul's interests and home. They would be threatened and concerned if family members, they do not know very well, start talking about taking things. There is a proper way to handle this. She did not follow it and had no instinct to do so. Her thinking is simple: it is hers and she will take it when she wants.

However...

My feathers are DEFINITELY in an uproar over the threat of calling Adult Protective Services on my sister for anything!

To even think for one minute that these people, who are paid to take care of Paul a few hours each day, have any right over family who are there because we love Paul and have his back...simply need to be "dressed down" or straightened out!

I wrote back, and included a few other key people that I feel need to be brought into the discussion, and addressed three issues.

1. The couch is my sisters and she can have it whenever she needs it.
2. This caregiver, Josie, is over stepping her job duties when she thinks she has a say in how any of Paul's family talk to Paul or in handling his care. All his caregivers need to be told the role of Paul's family.
3. We can discuss Adult Protective Services and the role of the family in Paul's care at our meeting Feb 4.

I finished by saying that for them to even imply that Paul's family would harm or do anything to hurt Paul was completely off the mark and shame on them for even considering such a thought.

We will ALWAYS be there and ALWAYS have his back and are the ones who have stopped the neglect and abuse that his previous caregivers have done.

I forewarned Mom. She will receive calls I am sure. LOL

I knew, deep down, that my lil' sister would stir the pot. She doesn't know how to work with the services for people in Independent/Semi-Independent/Dependent care. She tries to run them like a business, but I have learned that the ones who work with the disabled are a very sensitive lot and things need handled direct but with extreme care as to proper procedures and follow through.
She wove a web that is completely tangled and it is up to the other two guardians, Mom and myself to get it untangled.

(BTW: My email was re-wrote several times until the proper tone was written. I am rather vocal myself..teehee) --> Direct, honest with clear intentions and direction.

Should be fun to rebuild the missing links in the web of care around Paul. LOL

Ironic that: Paul has care services that really do care.

Maybe a bit too much...another blog.

Dropping the Ball what does it mean?

I mention dropping the ball.

Yes its a sport term and in working with Paul and his services it takes on a specific role for the family or guardian.

To drop the ball means simply that the connecting rod  (aka family-guardian) or one of the numerous services did not follow through with their task or area of concern.

heehee 

I can't help but smile at this cartoon as there are days (way too many honestly) that I feel like Charlie Brown. I hear those working with Paul saying they got it...over and over...yet find out that they didn't "got it."
 Why?
My goodness!
There are too many reasons as to why not...such as...

--new care givers lacking experience and training
--slipped past their mind due to something else more urgent
--no money
--not enough time
--received other information that felt more important
--mixed signals
--scheduling
--timing
--LIFE

I raise my eyebrows and say "good grief! not again...sigh"

Then...I pick up the pieces by figuring out where the mis-step happened and begin building another strand that will get Paul where he needs to be.

Ex: Paul and drinking pop. He was not to have any. Then he was only to have one and only rootbeer or sprite...no heavily caffeinated drinks. When I visited with him and his day staff I found out he has at least 2, sometimes more, but that this was ok as it wasn't Mountain Dew. His weight is getting heavier now that he is in a wheelchair and his cholesterol and sodium level have risen to levels that are not healthy. The staff is looking into healthier foods and low sodium foods but never even considered his pop intake.
So...I visited with Katy and she sent out emails to his other service staff and her day staff to monitor this better. Mainly, keep pop to one a day no more than 2.

Something as simple as a dietary change has a major impact on Paul's health and in this case, his kidney and bladder functions. They dropped the ball by hearing 'no mountain dew' and left it at that.
I needed to pick that ball back up and hand it back to them with more specific guidelines.

What is the key to making sure corrections can be made in a timely manner without sending the whole system off its' track?

Follow through
Follow through
Deep meditation
Follow through
Follow through
Breathe
Follow through
Follow through
Exercise...run around the block, hike a hill, lift weights
Follow through
Follow through
Have an ice cream cone
and
Follow through
Follow through
Follow through
Follow through

Repeat.

Upcoming meetings

We have a follow up meeting to the one we just had in December. There were several things that needed to be addressed, which came from that meeting and Mom was able to talk with Liz (the case management team's supervisor).

With my lil sister needing to take care of herself, I have stepped into the "gopher" role. That is ok. It needs done.

With this role, I need to do a bunch of visits with Paul's staff so I know where they are and what is needed for them to continue in caring for Paul. Found that they never received any information from the team of medical people in Kalispell. (no follow through on the sister's part here) Also, talked about things I noticed and that they noticed and coordinated efforts and clarified a few things.

I will be sending a request via email to get the information I need on his doctor's name and phone number so I can contact them and get this information before the meeting on the 28th.

I always hear from my mom and sister that this is micromanaging. I laugh at that. It isn't micromanaging anything when the family is the connecting rod between the 20-some services that work with Paul.

Yes, in theory, his case management and wrap around coordinating services should handle this, however in my experience, they get so bogged down by day to day operations that things fall through the cracks and mis-communication becomes mixed in or no communication.

Paul is not their only concern. He is OUR only concern. It can work well or it can get jumbled and when the family drops the ball on their end look out! My sister and mother have ran into this in the past year and half and are still struggling with having to step up more.

It is NOT easy or simple. It is complex and multi-dimensional with several entities pursuing their own objectives. I honestly feel that this is just the norm of having someone I care about in the situation Paul is in. It is worth every effort, even though sometimes I get drained. Balance is important between Paul's needs and my life.

Impromptu Meetings

I love...ABSOLUTELY LOVE having impromptu meetings with Paul's services...mainly his wrap-around caregivers at ORI and his Day services at ORI.

It truly amazes me how much a family guardian can find out from just chatting with those who take care of a family member. I think it also enlightens them as well.

So sorry but these two comics are the best!

Sometimes I am Calvin completely oblivious as to what is going on with the day to day workings of Paul's services and with Paul then one conversation and "SWOOSH!" I feel covered in hundreds of snowballs.

Then there are times, due to me being a mediator of sorts and connector-rod, I figure out that one step was not followed through with and I get the communication back moving smoothly by following through and connecting the missing step.

Example: When I was visiting with Mary she was confused as to a comment that my lil sister made about Paul needing 24 hour care. Mom and I were confuse by this as well. As we talked,  I found out that there have been no new orders sent from the orthopedic/physical therapist in Kalispell since 2013. However, my lil sister took Paul this past September and those records and orders were never sent to Paul's services...any of them. I have never received any information on these doctors as well. Mary is going to send me the contact information and I will call them and get all records so that we know what was said and where Paul's services need to go in his care.

In this case, both his services and I were working without some very necessary 'ropes' to connect each segment of his care to what is needed currently. My lil' sister didn't follow through (her weakness---my strength) with his services and medical information. She did do the leg work with getting Paul to his medical appointments (her strength--services weakness) however both Stacey and his services lacked the foresight to ask each other what was needed to change his care. (everyone's weakness honestly)

We have a follow-up meeting on the 28th of January and I am going to make sure that everyone has what they need in order to make sure we are all on the same page.

These impromptu meetings or visits are key in finding out what we all need to do to stay together in Paul's care.

I have enjoyed getting to know each person that has been a part of Paul's life. They all have given Paul and our family the greatest gift...their time and love.

In the past 28 years I have worked with 5 ORI day coordinators, 50 to 60 care-givers through 6 home hospice services, 4 state case managers and 3 of their supervisors and 4 state RNs, plus 4 different rental agencies and over 100 different medical professions. Other than about 4 of these I have met with personally over the years and I feel they are amazing. Oh, and yes, most were impromptu meetings. Just love these. The planned ones are a bit of a struggle sometimes. But THAT is another blog. ;-)