2016 Visions lead the way

What is my Vision for The Standley Foundation for Traumatic Brain Injury?

I have given this tons of pondering, thoughts, prayers, imaginings and self diagnosis. 

Sometimes it's as untouchable as our ability to move to another galaxy on a Class X Starship.

Other times it's real, very real with all the hope and expectation of an entrepreneur who simply wants to assist others on their path towards Independence either for their loved one or themselves.

VISION encompasses the past, present and future.

At times the lines blur.

My Vision actually is simple and yet encompasses all I hope it to.

To Assist, Support, and Embrace the Family, Caregivers, and Individual affected by Traumatic Brain Injury on the road to Living an Independent lifestyle the desire.

Paul

My brother Paul has changed almost 180 degrees from the personality he was before his horrific car accident in 1986. If you look at his face now...there is age and battle scars however the biggest thing I and anyone who meets him notices is that he smiles and has a laugh full of energy and life! His TBI, although a severe acquired brain injury, opened him up. He laughs, jokes and shares his passions and isn't afraid to be honest if he doesn't like something or want something... in his life. I have learned so much about living in the present because of Paul.

He gets mad then in a matter of a minute or two he is over it. Period it is done and that is that. Of course his short term memory may play a small part, but having been with him throughout the past 20+ years he does remember incidents and occasions where he was unhappy or hurt or angry or sad. He simply chooses to not dwell on them.
What a lesson we mere mortals need to learn and learn well. Life is a true ‪#‎gift‬ and ‪#‎blessing‬. One we need to embrace and share with each other. Paul shares! He cares! He loves to meet and greet people, getting to know them and enjoying good fun over those things he enjoys such as the Montana Griz, Montana Lady Griz, Seattle Seahawks, Missoula Mavericks, Minnesota Vikings, his paintings, crafts, music and shows.
His TBI brought my shy older brother out of himself and now he shares himself, unconditionally, with all those whom he meets.
What and truly "Divine" and "Inspirational" man my brother is. May we give of ourselves as he gives. We will surely be in a better state and place if that happens.

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Caregivers, Communication and Activities

I have to be honest. Paul has been very blessed to have had so many wonderful, caring and supportive CareGivers and program specialists in his life.

I know there have been numerous times over the past 30 years that we have questioned their skills, attentiveness, and jobs.

That is the Family's job! I do not apologize for being as involved and as persistent as I have been and will continue to be the "squeaky" wheel.

 His current group have proven that they are full of communication with each other and with the family. I have been able to get onto their "in-house" service called Therap. This has given me access to emails and communications that are happening. Now most of the day to day caregivers are fairly brief in their comments and these get rather dull, but it is good to see that they take a little extra effort to say how things are going with Paul.

Usually, if it is major, there are a lot more comments and I can get a feel for what is happening and I even put my own tidbit in when I feel it is needed.

We also have email with this system. Those items needing privacy and directed at the caregivers' supervisor or one of the many entities dealing with Paul and his care are handled through this venue, unless I need to address it over the phone.

Paul now has a younger, female that has taken over the evenings as well as taking Paul to games and other activities. She very interactive and her task notes are extremely informative and rather hilarious. She has a wonderful sense of humor. I have gained more insight as to what is going on with my brother on a day to day basis. She is sometimes a bit too forthcoming and honest but I cannot fault her for that. I have responded to several of her "Logs" and do hope she reads what I have written. If not, and I feel it needs addressed then I send a note to her "supervisors" and it is handled.

Now, my sister thinks I am micromanaging. I do not. I have a more hands on and interactive guardian/sister style than she is or even our mom's style. I feel that the services will continue to run more smoothly and with less confusion if they know there is a family member/guardian who does read the notes/logs and communicates consistently. I do not interfere or say my peace unless it needs to happen. I never desire Paul's "people" to be landslide or snowballed out of the blue by something from the family.

Our relationship needs to be symbiotic...truly needing each other to fill the needs of Paul. This is from experience over the past 27 years. Patient communication, often repetitive in nature, followed by "Follow Through" assists them in making necessary staffing and life routine changes in as timely a manner as possible.

For ex: I have been working with them to get Paul back into the YMCA for water exercise for the past 2 years. It stopped when Paul began his seizure meds and the effects it was having on him. We changed his home care services and day services management team about 18 months ago and since then it has been a patient step-by-step process of bringing them to the level and expectations we as a family desire. Paul is fully involved with these decisions (as expected). The Services finally hired someone to be involved with Paul and his water exercises. They have trained him and last I heard he is ready to go. It took about 4 months to get to this point once they found him.

As a contrast: It only took me one 'in-person' visit and a few emails/texts to have them implement a bi-weekly meal plan. No one thought about it and seeing that my lil' sister and mom were unaware that this was not continued with the new service, or maybe they didn't even know, it was not even thought about. I noticed the lack of a meal plan (usually would have been on the refrigerator) and made the suggestion about getting one together with Paul's help. This would solve the "what am I going to fix for dinner?" question as well as what is healthy and within his dietary restrictions. Within a week and a half, they had the menu together and used up what he already bought so that a new grocery list was made. It helps in so many ways to have a meal plan. It saves money. It saves waste. It rotates what Paul has and it gives variety where his restrictions are concerned. You would have thought I discovered the moon as the new caregivers had never even thought about this avenue.

These are just two examples of how important communications are between family and caregivers, when the one needing taken care of cannot express their needs very well. One took a couple years while the other only took a few days/weeks.

I look forward to reading the logs each week. I only respond to maybe 1 out of 30. It doesn't take much time...in fact, this blog takes longer to write.

A Poem from Paul's perspective with TBI

WHAT IF….

 I could tell you what I thought about my life.

 I could remember what I just told you.

 I could tell you when I hurt and where it hurts.

 I could drive myself where I need to go.

 I never had to age.

 My brain was as normal as yours.

 I was able to be like every other man.

 My best friend was actually my wife.

 I knew what I just ate for longer than 30 seconds.

I never had to rely upon someone to give me a shower so that I could clean myself.

I was able to take care of my toiletries and not have to have someone clean up after me.

My family truly knew what I wanted.

I was able to be understood without repeating my words slower or over and over again.

 

When strangers see me they wouldn’t think I am retarded or less than human.

 

I could be a father.

 

I was able to maintain a lengthy conversation without repeating what I just said several times.

 

You had to keep up with me and I was able to hold the door open for you.

 

I did not have a Traumatic Brain Injury…

 

Would you still care for me...Love me...Want to be around me...Treat me as a man?     

 

WHAT IF---This was the Fact and not the Fiction…

 I have had a good life but I wanted more.

 

Written by Shana Standley for her brother Derryl “Paul” Standley

A Colonoscopy

Coming in April Paul will be going into have a colonoscopy. Thankfully, they will be anaesthesizing him. I am planning on going over and being there to take him in and to be there when he wakes up and then take him home.

One of my concerns about this, is that Paul has problems with anaesthesia  and since he has new caregivers, I want to make sure that he sees his sister, a familiar face before and after.

Yes, I probably am a little over protective however, this is a big deal for him, even though in the scope of a life altering event it isn't immense or anything...unless something is found.

(Heeheeeheeeheeheeeeee.....sorry couldn't resist Calvin's decimation of his sand castle...there are days....)

So...I feel I need to be there for Paul. I have gone through a lot of surgeries by myself. No family, no friends, no one to be there when I went under and when I woke up. It was not always easy.

The difference is that I do not suffer from a TBI which affects my short term memory bad enough to where I cannot remember where I am at or for what reason. Paul needs familiarity.

Having his sister be there before, during and after will help him be less nervous and remain calm through the process. Plus, for me, if something is found or there needs to be other decisions made I am there and able to act.

I am actually looking forward to going over the day before and coming back either the evening of the surgery or the next day depending on how Paul is afterwards.

It is interesting to note that as things move forward for Paul and his services how much "behind the scenes" work needs to happen from the guardian so that there is little disruption in Paul's day to day care and life. It isn't micromanaging, as my little sister likes to state, it is being the conduit between Paul's services and his doctors and his family.

50/50

Wrap around services are not meant to take the place of family as caregivers.

Their responsibilities include taking Paul to doctor and hospital visits.
Arrange travel to and from Paul's work and activities.
They are the housecleaners and personal care attendants.
These services work with the doctors to help Paul with his care and physical needs.

Are they perfect?
Nope.

Does the family need to stay involved regularly in order to make sure that Paul's care doesn't suffer?
Yes.

Are they very concerned about Paul and do they want family involvement?
Yes.

Do they care as much and in the way that Paul's family does and will?
Nope.

Honestly, it is a 50/50 proposition with dealing and handling the Wrap-Around services for those with disabilities. Half the time they are right on top of it however...the other 50 percent they are in transition between new care givers, new policies, new rules and very little in the way of continuity for those they work.

This is why it is very important that a family member becomes and stays involved. No, I am not talking on a yearly basis or semi-annual one. I am talking monthly and consistent follow-ups with surprise visits.

I have become so use to the services faltering and bordering on neglect where my brother's care is concerned that I am a nag about making sure surprise visits are done quarterly. Would be more if I lived in Montana however, it isn't possible at this time. I do maintain consistency in communications, except when one of the other guardians (aka lil sis) wants to handle it. I do however, maintain a distant observation as she will always take off in another direction and Paul and his services still need consistency.

Mom and lil sis think the services should run perfectly with minimal interference. They think it is micro-managing because I want more involvement. I completely disagree. It is NOT micro-managing keeping in consistent communication and quarterly visits to make sure they are completing their jobs in a manner that Paul needs in order to maintain independence.

Visits keep them honest. Too many times they have lied in emails about Paul and his care. We only found out because we showed up to find that many necessary things were not being done as needed for Paul. Things like showers, toiletries, food supply, money, eating habits and cleanliness of Paul's apartment and clothes. Yep the basics were suffering and Paul's behaviors got worse. I saw the inter-departmental communications and I knew what was happening so family went in person and guess what? Things are put back in order and consistency and training is back where it needs to be.

Remember 50/50.

Family as Guardian or a Stranger?

With everything that has happened in the past 16 months, I am second thinking my earlier belief and position that family members are the best for guardianship.

I know, for those that know me, this view point and blog will come as a shock. However, if you read any of the posts on the other page or blog you might understand the reason I am rethinking my position.
(And then there were 3...Uh Oh...MEeTingS)



Here are my reasons for a guardian:

1) Juggler of all the services on behalf of Paul and the family.
2) Has a more open mind that is not clouded with "emotional crap" from years of family interactions and relations.
3) Paid to stay on top of things with Paul and his services and then informs the family. There is no "excuse" to why this isn't being done otherwise she/he is terminated and another placed in that position.
4) Frees up the family to just be family without the confusion of who is doing what with whom and the when.
5) Oh! and avoids the lack of communication that happens between family members because one or two are having a nervous breakdown and just cannot deal with any of Paul's needs right now so the third one is left figuring out what happened and how to get things moving for Paul.
6) Will live in the same town as Paul so travel and coordinating things for Paul on the family's behalf is not out of the way.
7) Definitely saves hurt feelings and misunderstandings between family members.



Reasons for Family to be guardians:

1) Family---No one knows or understands Paul better than family.
2) Family focus is on Paul and what is best for Paul overall instead of the simple focus like each service provides.
3) Cheaper
4) If more than 1 guardian, they can take turns relieving each other when it gets overwhelming for one or two of them
5) Don't have to worry if the hired guardian is doing his/her job and if he/she knows what he/she is doing




TRUE the paid guardian has more pros...however, that doesn't mean that the lists I made are full.

There are plenty more reasons for each position. Just ask my Mom or either of my Sisters and am sure they can give more reasons to each choice.

I bet none of them are the same or in agreement with the others.

Should, Would, Could...continued later.