Sunday, December 28, 2014

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.

Wednesday, December 24, 2014

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)

Calvin and Hobbes

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.

Calvin and Hobbes

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.


Monday, December 22, 2014

Holidays-Birthdays-Living Life



Every Christmas, Thanksgiving, New Year and around Paul's Birthday (May 31) I would take Paul to Dad and Kathy's, or Mom's or both and then spend time with Paul for 3 or 4 days. I would sometimes share the holidays with Cam...she would take Paul on one of the holidays and I would have him the other two. Birthdays were shared with Mom initially, but since she moved to WA around the turn of the century it's been me mostly.

Since I have been in Idaho, I have had to make other arrangements for these days. I try to get to Missoula to spend them with Paul and actually have been able the past two Christmas's however it is not the norm anymore.

It honestly sucks! (see me pouting)

I realize it is life...my life. However, I hate the fact that Paul spends this time without family. This Christmas I made arrangements to be there over the New Year as Anastasia was to be there for Christmas. Unfortunately, she cannot. So it was a quick and pleasant call to his wrap around coordinator to make sure he was spending the holiday with his friends. :-)

The really sad part is that so many of the individuals in Paul's condition have no families who care enough to leave their lives and spend these special days with their disabled family members. The services are so use to no family contact that when they deal with a family who do care and are involved...whether in 1s, 2s, 3s, or 4s. It is a transition and communication is very, very, very important.

Paul is such a blessing and to have the opportunities I have had with being apart of his life whether as a guardian or more importantly as a little sister, I just get all mushy on these days and wish I could be there in Missoula with him much more than I am. We all would.

MERRY CHRISTmas everyone and know that 
JESUS LIVES and that this time is about LOVE and FAMILY!!!
Remembering always of the Love Heavenly Father has for each of us, His children and that we are responsible to love each other as best as we can.

Monday, December 8, 2014

Monsters

There are days that the "Monsters" I meet are as invisible and incognito as Calvin's under his bed but I KNOW they are there for I hear them.

hmmmmmm

Where is my Tiger?

Isn't it funny that our "Monsters" are fed by our "Tigers"? The things we fear are fed by the things we ingest whether it is physically, mentally, emotionally or spiritually.

Learning to handle all those involved with Paul's care are not as scary as learning to deal with the numerous and frightening changes going on with Paul as he ages.

He is truly losing his mind. His memory is becoming more short term and circumstantial. The pathways to his long term memory in his brain are breaking apart and the synapses are having a difficult time connecting new or recent input to what has been long established. When he is tired he cannot even remember your face. The face that he has been seeing his whole life. (MY Monster)

His ability to walk and take care of himself is getting less and less. He is becoming dependent upon others and these others are poorly trained and change constantly. The one constant that Paul needs is consistent routine and familiar faces. So as he loses his ability to take care of himself and he can't remember new input everyone and everything around his routine is changing. (Paul's Monster)

His services handle things very administratively and when Paul's care is NOT administrative but interactive and personal they freak and everything loses focus and connection causing hiccups that affect Paul. (Our Monster)

No way around any of these Monsters. They cannot be touched but they affect each of us. We deal with them everyday and have for years.

Wish I had words of advice or wisdom to share on how best to deal with these and numerous other Monsters. I don't.

Only thing I can say is that once I realized there were "Monsters" I prayed and I continue to this day. Prayer keeps me from feeding my Monsters, aka my fears, and allows me to deal with what has to happen for Paul and his continued care even when communication isn't the best within the Guardians or the services.

And then there were 3

Maintaining clear and effective communication is tough even when there is only 1 (one) person involved as Guardian, when 3 (three) are involved...at the same time...THAT takes creativity.
The State Homecare Rep...Vicki R...contacted Mom (Ann-Guardian #1) about Paul's money he gets each month. She tells Mom that Paul is no longer doing his "job" at ORI. (Opportunity Resources Inc) This is news as we (all three of us) were unaware that this change happened. Then she lets Mom know that his income can no longer afford his life insurance. ($83/month) Now, since she took over Paul's case she has been trying to get rid of Paul's insurance. Several years ago we made the decision to purchase life insurance for Paul so that there is enough to cover his funeral expenses when he leaves us. Now, Vicki decided it doesn't need paid...so Mom is covering it on short notice. (That's how the State does things...on short notice...and Paul's needs are not being taken care of) Then Vicki informs Mom that he needs new shoes, and compression socks and those things that Medicaid has covered in the past. She lays this all on Mom's doorstep, plus that there will be a meeting on Dec 16th at 1pm Pacific time. One down.

On my part (Guardian #2), I am talking with his caregivers and found all this out a couple weeks ago and I  guess my questions and ideas were given to Vicki and she went to Mom, because she won't talk to my sister or me.

(I am receiving information through the medical cites like Therap and My Chart from his caregivers and doctors.)

I quickly communicated with Kate at ORI and asked about Paul and his job and am waiting to receive their input. Communication #2.

Anastasia (Guardian #3) is not answering her phone. She contacted me last week and I caught her up to date on what I knew then. Mentioned that I needed her in Missoula as soon as she left Billings as Paul and his services need some family assistance. She wasn't planning on going there for another week or two. Mom and I haven't heard from her since Saturday so she is going in blind and unaware and well...she bites at communication!
What my sister will find out will of course be different from what Mom and I have found out due to whom she decides to get the information from first.

Here's to hoping that she will reach out to Mom and I very soon...like today...and we can get her caught up and make a decision as to where to go with Paul's care so his caregivers and wrap around team will be on board and stability is brought back to Paul's world.

Will leave with another Calvin and Hobbes moment.


THAT'S how we see Paul and how Paul sees Paul. We WILL get back there. :-)

Monday, December 1, 2014

Check out the different pages

I have been doing separate pages for different tropics please check them out!!!

Friday, November 28, 2014

Day to Day Communications

When Paul became an independent ward of the state of Montana, he also received medical care for his needs. This is common knowledge amongst those who work with Paul. He also gets a stipend for living expenses.

Yet...
the wrap around services and care givers completely forget that things like, compression socks, donuts for the wheelchair and Paul's comfort, his shoes, his foot care, his braces, mattress pads and gloves are all covered.

We have also told them that if Paul needs anything that Medicaid will not cover to let us know and we will get it taken care of.

So when I asked about these recently, I get back a comment saying that Paul needs money for some of the items that Medicaid will cover.

Once again, I need to ask them to look into what Medicaid will cover and get back with me.

The sad part is that the Federal and State programs have cut everything for our citizens with Disabilities and what was once covered may not be anymore. Each state is different in what they cover so this complicates things.

Ok, breathe.

The cool thing is that Paul simply goes with it and all the while enjoys his life. He is very lucky he doesn't need to worry about these things. We are lucky that we can communicate with his care givers in order to meet his needs. Not easy and very redundant most of the time but worth it to see him happy and safe.

Tuesday, November 25, 2014

Recent obstacles

Last Friday I finally decided to send a note via the Intranet website for Paul's caregivers and agencies. I connected (that Thursday) to the website called THERAP, which Opportunity Resources incorporated (ORI)  within their agency, to communicate between the state case managers, caregiver agencies, ORI, doctors and family members. I discovered that Paul had been very agitated and acting out towards those individuals who come into his home and assist him with his daily chores and toiletries. No one called any of the guardians (me, my lil' sister-Anastasia(aka Stacey), and our mom--Ann). This is typical and one of the pitfalls and obstacles we have had to deal with over the past 24 years since Paul has been in Missoula...but that is a complete novel which I will disperse in sections in the future.

Anyway, back to what I read through the communications.

I found out that Paul saw his Primary care Physician, Dr. Lindley and with some issues he found with Paul's legs he said that Paul needs to get some "stockings". Paul became extremely upset and acted out trying to let them know that he wants "socks" not "stockings". The new people in his life were unaware that Paul is very set on what is 'manly' and "stockings" are NOT 'manly'. He also has not been getting cleaned in the shower and his shower was filthy! Paul is a very clean person and when his basic care is being neglected he doesn't sleep, doesn't like who ever it is that isn't doing what is needed. Paul also does not like being left out of the decision making process.

Paul had EVERY reason to be ticked off and since he cannot express himself due to his TBI and physical inabilities, he acts out and doesn't want anyone near him.

Now...as I read all I could think was that these people are idiots!!!! They work with TBI clients and they cannot see beyond their own list of duties and figure out that Paul is upset for a reason and thet need to resolve the issue with Paul.

Over the past 24 years this is what we as a family have dealt with. I realize they are only human and as I continued reading I discovered that there were several new caregivers in his home who were not familiar with Paul and Paul was NOT familiar with them. His short-term memory is pretty non-existent and change (of any kind) affects Paul negatively.

After several minutes...ok about an hour :-) to calm myself...I sent a letter explaining the basic information that his caregivers need in order to get Paul more comfortable with them and in helping him adjust to the changes. Again, I needed to remind them that they need to contact me or a family member when issues with Paul come up.

Now that I am on Therap, I need to remain more diligent in keeping abreast of what is going on. Paul's comfort, security, safety physically and emotionally are my prime motivators. I am his voice and his advocate. The past 24 years has given me the unique insight to know he needs me to fight for him even when everyone...including other family members...do not agree or are not listening.

It is a privilege.

Saturday, November 15, 2014

Breathe

One of the first things I remember after we arrived at the hospital was that Paul had just made it through surgery. They drilled a couple holes into his skull, over on each side, to release the fluid pressure inside his brain. The doctor said he was in a coma and that best case scenario was that he would live maybe 10 hours. My mom, my older sister and I were in shock. I don't remember any of us saying a word until that 10 hours was up.

Thursday, November 13, 2014

Foundation of Love

Over the past 29 years I have celebrated my brother Paul by sharing his world, his passions and his love for life with the family that distance and time took him away from, with the friends he has met in his world and with my friends that celebrate Paul with me.

It has been 29 years since his horrible one car rollover in 1986, where he was given 10 hours to live. Seven and half months later, he came out of his coma and began his life over. I was 17 going on 18 and into my Senior year of high school. I did not have a clue as to what was going to happen to my brother or to our family. The first 3.5 years he spent with our Dad, Rod, and his wife, Kathy, with our little sister Stacey (aka Anastasia), learning how to talk, how to walk, and how to live again. What Kathy gave Paul was a life that has endured since he woke up that November of 1986.

He has since out lived and out shown any expectation of what a person was able to have after the severity of his brain trauma. He paved new paths and is still teaching those who work with him from his caretakers to his doctors to his friends and I think most importantly to his family. I have been so blessed with his gift of life and the love he shares with all who come in contact with him. I am very protective of my brother Paul. I love him so much and want to share our experiences with other families, friends, and caregivers of those with TBI (traumatic brain injury).

For this reason, I am creating a foundation for Traumatic Brain Injury in celebration of Paul. The roads I have been on with him have not been easy. His fight and zest for life simply wouldn't and still won't quit. As he gets older we face some very heavy decisions as to his care. I know if my brother could express his thoughts he would want to help others in similar situations and support them on their journey.

This blog will be about Paul's journey up to this point and to whatever and wherever the future takes him. I will be his voice as well as share what I have learned so others may be assisted with their journeys.

Once my foundation is up, I will link this to the webpage where those who visit it will have free access to anything and everything about TBI. My hope and prayers is that our family's experiences will help TBI victims, their families, their caregivers and those medical professionals through the many, many challenges and opportunities ahead of them. I am hoping that a strong support community will grow from this and that all of our legacies will enhance the future treatment and care of those who are affected with TBI.