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.

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!!!