Communication...AGAIN!!!! LOL

 My "thought" concerning the idea of "No news is good news":

Below is an excerpt from a communication I sent today to Paul's Home Care services concerning their lack of follow through and communication to me, his guardian. They have been avoiding and even placating his case manager and I since about July of last year using...

"All is well" and "If there was an issue they would have contacted me."

However, this has not been the case. Several things have happened with Paul that I have found out through the other services working with Paul (who know that I am serious about communication). Once I have found out then his case manager and I work to understand what happened and how it was addressed. His home care services lack the initiative to honor my request of weekly communication (comms) and have about 10% follow through with what communication exists. Usually it is all "rosy" and nothing to tell. My specific questions are glossed over or completely avoided. This comes across as rude, inconsiderate and evasive. Thus, I begin to question exactly what is going on and a visit to Missoula will follow very soon.

The email below is the last chance for them to step their game back up to meeting the basic requests I asked and have reminded them of over the past year and half. Options are opening up again for me to look at with Paul's current care arrangements, however I would much rather continue working with his current home services and if I need to get my requests formalized, in legalities, I will. I truly do not want this nor do I desire moving Paul or changing his current home situation however, the options are opening up...

Afternoon everyone!!!

It's been awhile since I have talked with most of you so am just reconnecting.

I am one, whom you know, that believes no communication is miscommunication.

Too much time has passed with very little contact or updates.

This basically means that Paul's homecare is not making sure to keep me in the loop with what is going on with staffing changes and how Paul is adjusting to these as well as to the new items that have been placed within his apartment.

(Staff Coordinator=SC), thank you for taking the time to catch (case manager=CM) and I up on some of the questions I asked. I truly appreciate all you do and want to say thank you! I know nights are rough and understand the time constraints this places on you.

My thoughts are as follows:

(Staff Supervisor=SS) seeing that (SC) is not able to make the monthly phone conferences with (CM) and I, will you put us on your schedule please? I feel this will assist in covering low T-Logs and assist in addressing concerns which arise and will save time all the way around.

Due to Paul's specific dietary concerns with weight and cholesterol, (SC) would you see that he has a meal menu that will be followed when shopping? I know you set this going awhile ago and it needs to be continued...especially since there are new and transitioning staff issues. Paul still decides what he wants to eat, however I am asking the staff to make sure healthier choices are decided upon within dietary guidelines. Thank you!

(Med Tech=MT), please let me know when Paul has appointments. I received a call from Five Valley's Urology and was unaware of Paul having a follow-up. They were also confused as to whom to call. I know you are still adjusting and it can still be overwhelming. :-) A simple note or text will be fine when you schedule the appointment. Also, how are things going with Paul's glasses? What about the leg brace? BTW: I appreciated talking with you recently. I cannot wait to meet you in the next month or two!

(ORI DayStaff=ORI), THANK YOU! for communicating with me and catching me up on how Paul is doing at ORI during his time there.

(CM), THANK YOU for keeping in communication and I do hope you enjoyed your time off!!! ( you will probably read this when you get back)

I understand that things get hectic and time constraints between work and our own lives tend to add pressure. It is normal to drop the ball on things or entities that we do not see or interact with on a daily basis. I, like each of you, have numerous obligations and things pulling me in opposite directions.

However, I am a Guardian/Sister that asks more from those working with my brother. This MORE is to communicate on a regular basis...ie: T-Logs, texts, secure comms, phone calls etc. These need to happen more than has been done in the past 6-10 months. Each of you know the reasons I ask this. If you don't, then call me and I will gladly tell you of what brought ORI to taking over Paul's homecare.

I am here to assist you in anyway I am able; but my first priority is Paul and no communication eventually leaves him in a situation where his needs are missed. I do not assume that every caregiver is on top of all his needs and concerns. Recent EX: He scratched his face and broke his glasses due to an incident with a "Sub" and this caused him an injury and having to replace his glasses. No one said anything until after the fact. I am still unclear as to what happened but this incident is not the concern.

My concern is that I know I have asked if Paul is hurt, whether he goes to the hospital or not, I am to be informed immediately! A text or a call is due at the time of the incident/accident/injury. This did not happen and I still have not heard from his homecare services about what did happened. (do not need it now)

My hope is that if you have questions or concern in following my request you will contact me and we can talk through these.

I realize you each need to get back to work and other items on your agenda. I do too.

My last request is that each of you will send me a reply that you have received this communication and for those I have asked specific things, that you will follow through with what I have asked and let me know when it is completed and ideas on how to make these happen.

Take care and know communication is important and even vital however this in no way diminishes or is meant as a "butt chewing", just more of a reminder of how important follow through and communication are to the care of Paul. I do feel a ton of gratitude for what each of you do in your positions. Thank you, sincerely and from the bottom of my heart for ALL you do.

Shana Standley-Wolfe

Pull my finger...I DARE you!!!

                                              

                              

  Now that wasn't so bad was it?

                   (I NEVER forget that I do this for Paul)

Thoughts...Lots and Lots of THOUGHTS!

I trained my brain to explore the questions which, come up before and after my meetings with Paul's Services. Sometimes they are very simple such as:

                   "Why are there only 4 T-Logs
                             in the past month?"
OR
                      "Is there a meal plan and
                          is it being followed?"

HOWEVER... (and there ALWAYS is a HOWEVER)

           These questions tend to
           lead to more Questions!

Like:

"Who are Paul's Caregivers? How many NEW ones are there now?"

OR

"Have the NEW caregivers been trained that Paul has specific dietary concerns"

OR

"Do these new people know what is to be put into T-Logs and are the Supervisors making sure that this is being followed through with?"

                 Some are fairly obvious after 20+ years of working with Home Care Services.

Yes, the staff has or is going through their personnel. Yes, the ball has been dropped when it comes to follow through with specific communications that concern Paul due to the high turnover.

No, training and follow through from Supervisors is NOT being done when it comes to T-Logs, Diet and Diet Plans, Physical items that have been initiated during previous staff etc. etc. etc.

HOWEVER

(just as good as a BUT)

 

These Questions and Answers are ALOT more complex and NOT as Simple as I would wish!

 

Well...as my Daddy use to say:

 

"Shit in One Hand

and

Wish in the Other...

GUESS

Which One Fills Up Faster?"

 

 

 



A Valid Question from my old' Sage of a Father. One I have asked myself several Thousands of times when working with humans! Truth is quite simple: Humans have the ability to WISH however there is way more SHIT they end up dealing with than wished so....

My Wishes need to be prioritized and renegotiated or reworked in order to FIT the current situation and my Questions need reworded so that honest, open and accountable communication happens.


Which ONE do I choose? Hmmmmm



This leads me to putting on my thinking cap and delving deeper into the Cause:Effect relationship of Paul's care.
Thankfully I have developed open relationships with Paul's Services enough that I can always dig further and begin the process of "Getting to the Bottom" of whatever question I need answers.







It is not a quick fix...no matter the Question anymore. Paul and his care has evolved beyond what I ever thought possible or even considered. I mean "14" different interested parties (not counting doctors and healthcare) at one meeting just for a change in Case Management and home Care Services?!?!?!?!

 

I Miss the days when it was a Case Manager, a Rehab Tech, a Supervisor of the Home Care, ORI Supervisor, Paul and Myself.

 

I am now, what the professional business world calls a "Project Manager" with Paul being the "Project" and I being the one who looks at all aspects of his life(me as role of Sister) and care(me as Guardian). Then I work with those who deal with the daily, monthly, bi-annual and Annual concerns.

 

It's not a bad thing, actually it is a good one as I realize that I need to be professional and consistent with Paul's Services. Hence,  the reason I have lots and lots of notes and calendar appointments and my phone has more contact information for Paul then for myself.

 

HOWEVER....

                            .....I have Thoughts...LOTS and LOTS of THOUGHTS!!!!!!

I think I am going to go to sleep now! (LOL)

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)