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.

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. :-)

Check out the different pages

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

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.

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.

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.