Communication needs between Family and Services

Morning everyone!

It is Labor Day and as I was reading the TLogs I want to say thank you for picking this back up. Communication is important! Without it so much slips through the cracks.

Yes...it takes a few minutes but the BENEFITS supersede any and all reasons not to do it. Allow me to share a few insights.

Our Dad, who died 11 years ago, taught me to fight for what I believe in and my family...even if it means stepping on a few toes. I look back at when Paul spent 7 1/2 months in a coma, then another 5 months getting ready to go home. The doctors and services were saying put him in a nursing home and forget about him as he will never be able to have a life. Dad and our step-Mom said "Like HELL we will!" They took him to Bigfork and spent the next 4 years helping Paul gain Independence. He came to Missoula after that and has been the awesome, amazing Hero and person that you have the privilege of knowing and working with. This attitude has kept him fighting through the ups and downs of his life.

Let me tell you of a time, in the not so distant past...(2 years ago) when Paul's services stopped communicating. At first it was a matter of inconvenience due to limited time, over-worked staff and too many things to do. However, within a couple months Paul was neglected. He was left to shower by hisself and couldn't get clean, he began falling again, he was showing up with bruises and scratches. He wasn't eating and lost a lot of weight. He was short-tempered. He was angry. He acted out. His apartment smelt like a sewer. His bathroom was filthy. His refrigerator had out-dated items and he was taking the same food to work everyday.

We, as his Family and Guardians, stepped in as soon as I possibly could get my little sister, Anastasia, there to find out what was going on. She was the nice one. If I found Paul in the state he was in, where it took 3 hours to soak off the poop from his backside and two weeks to clean the urine off his clothes, shoes, carpets etc. I would have gone Ballistic! My sister was devastated to say the least. We removed those services and the main care-hab trainer. Obviously for very good reasons.

I am NOT saying this is happening again however, when I get nothing in ways of communication and I get rudimentary, blah responses I question what is going on.

My brother WILL NEVER be mistreated again! I will do all I can to support and assist his services in order to provide Paul with the best possible care.

I ask one thing and one thing only...and that is to "Communicate". I do not care if it is a once a month phone call for months things are going well and smooth. Or an email every two weeks to just catch me up on what is going on. A Notepad for the caregivers to communicate in when they come in after each other. A T-Log. I am open to any of these.

As for a computer in Paul's apartment. A computer/laptop is not an item Paul can afford and he will never use it. It provides nothing in way of human interaction, which is what Paul desires above all else. His money needs to go towards "outings" and "games" plus those items he needs for toiletries and personal care that his "services" do not pay for. The cost of the internet each month is money that needs spent for things Paul uses. It will also be too involved for the caregivers to use with Paul as he will never remember any of it and will lose interest. Yes, it is one solution but it is not viable for Paul and his situation.

I realize that there may those who disagree or feel different. I realize there are those who do not like "ME" or my involvement. I do not care. Paul is my brother and I will do all I can to protect him and make sure he is living the life he loves and wants. I realize his situation better then I feel you give me credit. I have been with him all my life and I was the one who has fought with and alongside those services working with Paul as well as against those services who did not do their job and neglected him. I am here to work alongside you. I am your conduit however, I am Paul's Advocate and Guardian first.

I have never felt like an adversary to his services. I am a defender and resource. Please do not cause me to rethink this position.

Shana (sister and guardian)

Yearly Family Visits with the Doctors

 

Paul has an appointment with his PCP at the end of this month and since I will be in the area I plan on going. It has been awhile since I went and I feel it is important that family meet with his PCP once a year or so. There are so many miscommunications due to whoever attends the visit and what their focus or concerns may be...and these sometimes have nothing to do with Paul but their "other" clients or they forget info...(see cartoon cartoon--->)

Well...if YOU would have said that in the 1st place!!!
 

 

I often wonder how the caregivers do it? So much to go over and so little time when they have several clients needing care...at all levels....

 

THIS is the REASON it is VERY VERY VERY Important for Family involvement as often as possible...especially when 3 guardians turns into 1 lives out of the area of their TBI family member's home town.

 

MY PLAN:

I begin a couple weeks ahead of the scheduled visit connecting with all his services.

 

First, I go into the Services Communication center (aka Therap) and see what has been happening since I last was in...which usually is about a week and half. The past two to three months there has been very little in communication on the daily notes and emails I sent each month. One does really great but the others are not doing so well and these are the ones I need soooo

 

Second, I send out a new round of emails letting them I know I am coming to town and will be taking Paul to his doctor's appointment. I also ask all my questions and let them know that I need more frequent and more detailed daily communications and the reasons I have for this...usually medical and care concerns that need addressed. (this tends to get a response...and quickly)

 

WHY?

                    Simply because Paul's Guardian is coming to town...

                                               and WILL notice everything that is being done and

            NOT being done

(Gets them BACK on their toes and attentive)

 

Third, I contact his PCP to let him know the family will be at this appointment. This way he knows we will look at what has happened, is happening and get a plan in place on where to go for Paul for the next 6 months to a year. (Proactive approach...not reactive)

 

BELIEVE me when I say that WITHOUT Family involvement and communication there will be things that are:

                                 * Missed

                                 * Forgotten

                                 * Never Done 

                                 * Not Followed through with

 

AND

 

We have to start ALL over again at the next appointment or meeting with Family!

This leads to A LOT of stress, worry and discomfort for Paul.

 

Inclosing...when this happens Paul and his humor turns into this....



 NOT PRETTY BY NO STRETCH OF THE IMAGINATION!!!! (LOL)

 

 



Finding "decent care"

Honestly, there are times I literally have wished for some very strong...I don't mean like aspirin or Tylenol...I MEAN Oxi plus! Diazepam. LOL

There have been moments when I could not help but wonder where does the "Home Services" find these caregivers?!

Let me give a few examples:

When we moved Paul back in 2012 into his new apartment, we needed to pack his things and clean the old apartment. The huge Trash receptacle for the entire apartment complex only had maybe three bags of garbage in it. Looking at probably about  4' wide, 4' high, and approx. 5' deep. One would think that there wasn't that much garbage in my brother's tiny one bedroom. WRONG!!!! We found so much that was NEVER thrown away and should have been such as newspapers, mags, plastic cups, Plastic containers of all kinds, out-dated food that should NEVER have been kept as some dated back to 2005!!!! Old tickets, old posters, clothes (that did not fit), tons of candy and pop cans. The dumpster was overflowing when we finished. All I could think about, while doing this was...who in their right mind would have kept any of this?! It honestly made "Hoarders" look like a show my brother's caregivers could easily go on and fit right in. Thankfully, those caregivers are long gone.

Another example that I questioned the hiring processes was when one of Paul's caregivers, a male, decided that it was perfectly ok to take Paul to the Mall for an activity. OK. Paul is not into shopping, it wears him out and he cannot get around so well. They went and just sat and watched people. How boring can you get?! With Paul's TBI, he needs mental stimulation and activities that help build his strength and endurance. That was about 6 or so years ago (maybe longer) and I made a conscious effort to get games, and come up with ideas of what are appropriate activities for an adult 40 year old male. I continue to do this as these caregivers have no imagination and without proper coaching and training they will never get my brother engaged in anything but the routine.

The best one has to be about 3 years ago. I noticed Paul was not doing well and seemed really depressed and out of sorts. That was when we brought in the lil sister to stay awhile and find out what was going on...or in this case what was NOT happening with Paul and his caregivers. We found out that yes Paul got a shower but no one helped him clean his backside...the are he cannot reach and take care of. He was covered in filth and his clothes stunk like urine and his shoes stunk like urine and he was missing clothes and his glasses. Seems that the home services was having one heck of a time with keeping caregivers and the ones they did get were not trained and honestly didn't know a thing of how to care for someone in Paul's situation. We fired them. Still considering a lawsuit.

As I look at what the Standley Foundation for TBI will be able to do for TBI persons and their families, one of the most apparent items is that there NEEDS to be a proper training program or curriculum developed for the Caregivers of TBI. It needs to cover everything from First Aid, to CPR, to house cleaning, working with and including the client and their family in day to day decisions, laundry, how to assist in the bathroom and shower, Activities that don't cost a lot of money (believe me there hasn't been one person I have met with a TBI that is independently wealthy), how to maximize their efficiency within the allotted time, menu planning, grocery shopping, transportation needs and concerns, conflict resolution and being a mediator rather than a dictator or slave.

I know there is a LOT to the training however, once  I have secured funding I am going to get the program/curriculum developed and offer it as an online/web course.

I also think that I may figure out a grant program so that these wonderful caregivers, who are truly amazing (like the ones Paul has currently and some of his from the past), can be subsidized monetarily, which will bring their living wage up to around $20. (A just amount for what they are expected to do) Right now they are lucky to get $10-$12, and that is a high estimation. I know currently, Paul's Case Manager, and several others went to Helena, to talk about the inadequate wage and expectations and funding for these precious services who provide those needing extra care a life all their own. I hope when they go again that I am asked to join as I have a lot to discuss with our congressional leaders and how they spend our tax dollars.

Ok will get off my soap box for now.

On a Serious Note

As I was reading the newly completed "Service Plan" for my brother Paul, I noticed several administrative items needing changed and updated. I will take care of these in an email to his Case Manager, Cris.

I also noticed a couple very important items that need updated and changed as well.

For the spot marked if Paul has a Living Will (DNR) it was marked "No". This caught my attention and I immediately contacted our Mom to discuss this with her. I feel that Paul needs a DNR/Living Will made up and in place. Mom was not focusing on our conversation, as it was a serious one concerning Paul, and she just doesn't focus on these things. However, I wanted and needed her agreement to get this in place soon.

Once I simply stated "Mom, I need your agreement to pursue this now, so I can get things in order for Paul." She said yes it was important and she agreed. We will probably discuss it more over the next week, after she has had time to digest the conversation.

I have no clue what anyone reading this may think or feel about the matter of a DNR or Living Wills, but everyone in my family has had these in place since the early 1990s due to losing several people early and after Paul's accident in 1986 and mine in 1989.

Each family needs to determine for themselves what is appropriate and then discuss it with those they love so that their wishes will be fulfilled. My family did not discuss it with Paul, as it never has come up before now. Almost, like we were not able to make this decision with all those other items concerning Paul and his care.

We have a life insurance policy for Paul's burial and we have a plot bought next to Dad. However, his services only know of the insurance. I need to get a couple more items taken care of then I need to get this into his "Service Plan" so that if Paul outlives the rest of us (his Mom and sisters) then they know what to do for him.

I am unsure how to approach these topics with my brother, as they are not what he wants to talk about ever!

My questions concerning this are:

 

How do I talk about heavy and complicated issues concerning death with Paul?

 

What words could I use, knowing that four worded sentences are as long as his memory can hold

and then for only about 3 seconds?

 

When is the appropriate time to talk about this?

 

Does Paul even care?

 

He gets upset over medical and these life decisions, is it right to upset him?

 

 

Should I simply make the decisions and get the rest of the family's approval?

 

 

I do not like this topic either, but feel it is important to share with everyone as these decisions need made, especially for family who cannot make the necessary end of life choices that even non-TBI victims do not want to discuss.

 

 

I encourage everyone to have these talks and make those preparations so that when the time comes when we move on from this world, our family knows our wishes...we know our family's wishes...and we can handle, this not so great event of, losing someone we love.

 

 

My Dad didn't do this and his wife, Kathy, was left a mess that she has barely gotten out of financially some 11 years later. During the immediate aftermath of his accident, she was completely unprepared for the questions the coroner, Funeral home and priest asked. I was grateful that I could be there to assist her and everything turned out well for the service and luncheon get-together afterwards. Looking back, I am glad that I had my accident as it helped me learn that "death" comes to all and it's those of us who remain that need taken care of and planned for. Hence, why I have had a will and DNR/Living Will since the early 1990s and my family know my wishes.

 

 

Be pro-active and take care of this. Do not leave your loved ones in the dark on what you want and make sure to have this taken care of for those whom you are the guardian and caregiver.





Continual diligence

As we age, our bodies seem to turn against us. This is not different for an individual with TBI except that the aging process goes quicker and with little to no warning. One day my brother is on top of the world and doing his normal everyday things. He can walk. He can communicate effectively enough. Then through a process of the brain and its synapses not being able to connect with themselves he begins to have falls, confusion. Memory lapses to the point he completely forgets  everything and reaches for long term memories in order to connect with what is going on around him.

The services, since they see him everyday, don't tend to take notice unless it is so big, like when he fell flat on his face and busted his front teeth, that blood is spewing or Paul is unconscious etc. This is the downside for everyone. I come from a very proactive stance and I dislike (its one of my pet peeves) reactive approaches. That is why I am extremely diligent in maintaining contact each week and offering insight and asking questions as I feel they are needed. 

I know the services deal with more than just my brother so my proactive position allows me to get ahead of Paul's body giving out completely when something big is happening within his brain and his body. He is 51 this year, however his brain is more like 90 and his body is wheelchair dependent...aka he has lost a lot of strength and the ability to truly take care of himself.


As a guardian, I have to make decisions for Paul when it comes to everything health wise and legally. So, I watch, listen, read and have numerous conversations with doctors and care givers in hopes to make the best decision possible for Paul. While doing this I also need to talk with Paul in simple language so he understands and so he can let me know what he wants. I do this when no one else is in the room with us as their opinions tend to influence Paul.

Yes, it is true that I have my own preference, however I do the best I can to present all facts. This looks something like the following:

Me: Paul we need to decide whether you need surgery.
Paul: Surgery? For what?
Me: Your foot (as an example).
Paul: What's wrong with my foot?
Me: You cannot move it so you can walk.
Paul: What's that? (pointing to something on my chest...a game he plays)
Me: Paul, can you walk?
Paul: Ya
Me: let's see ok?
Paul: Ok (he gets up and we walk a bit noticing that he drags his left foot and cannot put full weight on it...we then sit down)
Me: Paul is it difficult to walk?
Paul: A lil' bit.
Me: Do you want surgery to see if it can help?
Paul: I dunno.
Me: Does it hurt to walk?
Paul: A lil' bit.
Me: Do you want to see a doctor about fixing your foot so you can walk?
Paul: Why?
Me: Because you are having problems walking.
Paul: When?
Me: As soon as we can get it scheduled.
Paul: Grrrrrooooowwwwwwlllllllll
Me: Is that a yes?
Paul: Ok

I struggle, as do his doctors and caregivers with knowing exactly what to do for him in these types of situations. It is then up to me to make the final decision.

I have to look at the long-term as well as the short-term for what is truly in Paul's best interest on most everything.

His services deal with the short-term and immediate concerns hence why they tend to be more reactive and less proactive.

Doctors tend to look at costs vs benefits in the short run although we have been given a blessing with his PCP Dr. Lindley. He is extremely concerned about the long run for Paul and his life.

After a conversation, like the one above with my brother, he and I are wore out and his brain goes to those things that bring him comfort. I found that to push the issue causes him great distress as he honestly doesn't know and cannot understand all of the conversation. His TBI will not allow that for him.

It's scary to be your brother's brain and decision maker. I have had no children to practice on or prepare me for this Parental role. I accept it is my responsibility and I take it on gladly for Paul. I am thankful I have my Father in Heaven and Savior to be my confidants and guides. They also send the Comforter to me and to my brother so we can get through all we need to as he ages and for all the things we have gone through.

I remember the saying "Courage is not the absence of Fear. Courage is still doing what needs done in-spite of the Fear." (I think I paraphrased) LOL

My experiences have taught me to be PROACTIVE and to Listen and Pray. The answers will come.