Monday, April 27, 2015

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.

Sunday, April 5, 2015

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