Finally received the records from the Neurologist and Physiatrist that have been working with Paul since August 30, 2013. What I found was very interesting. Several key steps have been missed due to no follow through with getting these records to Paul's services and PCP in Missoula.
--Seeing an Orthopedic Surgeon
--Progressive Physical therapy
--No mention that Paul was to remain in the wheelchair in fact...the Physiatrist felt that Paul would be back to using the walker within a year and a half...this has NOT happened due to this particular ball being dropped...
Who's to blame...no blame...simple accountability needed.
The family that were doing the visits with these doctors and "managing" Paul's care and services is needing to take full responsibility and accountability for not ensuring that these very informative and useful records were sent to Paul's doctor, physical therapist and services.
OK...you're right! I want to scream!!!!! My mom and little sister dropped the ball big time! They thought that my lil sister could remember everything the doctors told her in Kalispell. Oh and her arrogance that she would handle Paul's services and that they will do as they are told is absolutely unbelievable!!! Mom let her do it!
No one was talking to me for I would have asked if they made sure to get these records released to Paul's PCP, PT and services. But NOOOOOOooooooooooo I was not to be consulted and when I tried to find out what was going on she refused to talk to me. I was "micromanaging" and "controlling".
Fact: His services...none of them...can operate or put into effect anything that the doctors say without prescriptions and referrals and yes the records of Paul's visits. No service, that deal with clients in Paul's situation or any situation for that matter, can move forward with care without specific paperwork and formalities. She thought she could say it and it would be so...is she Captain Jean luc Piccard or Captain James T Kirk!!??? Even they knew there were proper and important protocols to follow.
Sadly, her need to show me, that she knew better than me when handling Paul's care, is what caused this huge deviation from the doctors' referrals to his care.
Upside is that Paul is ok.
Downside is that Paul will most likely never get out of the wheelchair...
Saturday, January 31, 2015
Tuesday, January 13, 2015
Tangled web
I love miscommunication. It ALWAYS happens when dealing with care services. Throw in a few spontaneous incidents between the "sporadic bull in a china hut" sister and a "non-native English speaking" caregiver and all of a sudden all hell breaks loose within his services.
I knew I should have talked with Mary (supervisor) after talking with the coordinator over Anastasia's visit with Josie(caregiver) about my sister's couch and art canvas. Heather(coordinator) talked with Mary and this is what Mary heard. 'Anastasia will be taking the couch she brought to Paul's apartment. If she takes the love-seat, which was bought by Paul, then this was not to happen and a call to Adult Protective Services was in order?'
Mary sent this to everyone in Paul's Service planning team, including me.
Of course I had to respond!
My sister has not learned that she needs to make arrangements with his caregivers for adding or taking away things that are in Paul's apartment. These people are there, usually, to protect Paul's interests and home. They would be threatened and concerned if family members, they do not know very well, start talking about taking things. There is a proper way to handle this. She did not follow it and had no instinct to do so. Her thinking is simple: it is hers and she will take it when she wants.
However...
My feathers are DEFINITELY in an uproar over the threat of calling Adult Protective Services on my sister for anything!
To even think for one minute that these people, who are paid to take care of Paul a few hours each day, have any right over family who are there because we love Paul and have his back...simply need to be "dressed down" or straightened out!
I wrote back, and included a few other key people that I feel need to be brought into the discussion, and addressed three issues.
1. The couch is my sisters and she can have it whenever she needs it.
2. This caregiver, Josie, is over stepping her job duties when she thinks she has a say in how any of Paul's family talk to Paul or in handling his care. All his caregivers need to be told the role of Paul's family.
3. We can discuss Adult Protective Services and the role of the family in Paul's care at our meeting Feb 4.
I finished by saying that for them to even imply that Paul's family would harm or do anything to hurt Paul was completely off the mark and shame on them for even considering such a thought.
We will ALWAYS be there and ALWAYS have his back and are the ones who have stopped the neglect and abuse that his previous caregivers have done.
I forewarned Mom. She will receive calls I am sure. LOL
I knew, deep down, that my lil' sister would stir the pot. She doesn't know how to work with the services for people in Independent/Semi-Independent/Dependent care. She tries to run them like a business, but I have learned that the ones who work with the disabled are a very sensitive lot and things need handled direct but with extreme care as to proper procedures and follow through.
She wove a web that is completely tangled and it is up to the other two guardians, Mom and myself to get it untangled.
(BTW: My email was re-wrote several times until the proper tone was written. I am rather vocal myself..teehee) --> Direct, honest with clear intentions and direction.
Should be fun to rebuild the missing links in the web of care around Paul. LOL
Ironic that: Paul has care services that really do care.
Maybe a bit too much...another blog.
I knew I should have talked with Mary (supervisor) after talking with the coordinator over Anastasia's visit with Josie(caregiver) about my sister's couch and art canvas. Heather(coordinator) talked with Mary and this is what Mary heard. 'Anastasia will be taking the couch she brought to Paul's apartment. If she takes the love-seat, which was bought by Paul, then this was not to happen and a call to Adult Protective Services was in order?'
Mary sent this to everyone in Paul's Service planning team, including me.
Of course I had to respond!
My sister has not learned that she needs to make arrangements with his caregivers for adding or taking away things that are in Paul's apartment. These people are there, usually, to protect Paul's interests and home. They would be threatened and concerned if family members, they do not know very well, start talking about taking things. There is a proper way to handle this. She did not follow it and had no instinct to do so. Her thinking is simple: it is hers and she will take it when she wants.
However...
My feathers are DEFINITELY in an uproar over the threat of calling Adult Protective Services on my sister for anything!
To even think for one minute that these people, who are paid to take care of Paul a few hours each day, have any right over family who are there because we love Paul and have his back...simply need to be "dressed down" or straightened out!
I wrote back, and included a few other key people that I feel need to be brought into the discussion, and addressed three issues.
1. The couch is my sisters and she can have it whenever she needs it.
2. This caregiver, Josie, is over stepping her job duties when she thinks she has a say in how any of Paul's family talk to Paul or in handling his care. All his caregivers need to be told the role of Paul's family.
3. We can discuss Adult Protective Services and the role of the family in Paul's care at our meeting Feb 4.
I finished by saying that for them to even imply that Paul's family would harm or do anything to hurt Paul was completely off the mark and shame on them for even considering such a thought.
We will ALWAYS be there and ALWAYS have his back and are the ones who have stopped the neglect and abuse that his previous caregivers have done.
I forewarned Mom. She will receive calls I am sure. LOL
I knew, deep down, that my lil' sister would stir the pot. She doesn't know how to work with the services for people in Independent/Semi-Independent/Dependent care. She tries to run them like a business, but I have learned that the ones who work with the disabled are a very sensitive lot and things need handled direct but with extreme care as to proper procedures and follow through.
She wove a web that is completely tangled and it is up to the other two guardians, Mom and myself to get it untangled.
(BTW: My email was re-wrote several times until the proper tone was written. I am rather vocal myself..teehee) --> Direct, honest with clear intentions and direction.
Should be fun to rebuild the missing links in the web of care around Paul. LOL
Ironic that: Paul has care services that really do care.
Maybe a bit too much...another blog.
Monday, January 5, 2015
Dropping the Ball what does it mean?
I mention dropping the ball.
Yes its a sport term and in working with Paul and his services it takes on a specific role for the family or guardian.
To drop the ball means simply that the connecting rod (aka family-guardian) or one of the numerous services did not follow through with their task or area of concern.
heehee
I can't help but smile at this cartoon as there are days (way too many honestly) that I feel like Charlie Brown. I hear those working with Paul saying they got it...over and over...yet find out that they didn't "got it."
Why?
My goodness!
There are too many reasons as to why not...such as...
--new care givers lacking experience and training
--slipped past their mind due to something else more urgent
--no money
--not enough time
--received other information that felt more important
--mixed signals
--scheduling
--timing
--LIFE
I raise my eyebrows and say "good grief! not again...sigh"
Then...I pick up the pieces by figuring out where the mis-step happened and begin building another strand that will get Paul where he needs to be.
Ex: Paul and drinking pop. He was not to have any. Then he was only to have one and only rootbeer or sprite...no heavily caffeinated drinks. When I visited with him and his day staff I found out he has at least 2, sometimes more, but that this was ok as it wasn't Mountain Dew. His weight is getting heavier now that he is in a wheelchair and his cholesterol and sodium level have risen to levels that are not healthy. The staff is looking into healthier foods and low sodium foods but never even considered his pop intake.
So...I visited with Katy and she sent out emails to his other service staff and her day staff to monitor this better. Mainly, keep pop to one a day no more than 2.
Something as simple as a dietary change has a major impact on Paul's health and in this case, his kidney and bladder functions. They dropped the ball by hearing 'no mountain dew' and left it at that.
I needed to pick that ball back up and hand it back to them with more specific guidelines.
What is the key to making sure corrections can be made in a timely manner without sending the whole system off its' track?
Follow through
Follow through
Deep meditation
Follow through
Follow through
Breathe
Follow through
Follow through
Exercise...run around the block, hike a hill, lift weights
Follow through
Follow through
Have an ice cream cone
and
Follow through
Follow through
Follow through
Follow through
Repeat.
Yes its a sport term and in working with Paul and his services it takes on a specific role for the family or guardian.
To drop the ball means simply that the connecting rod (aka family-guardian) or one of the numerous services did not follow through with their task or area of concern.
heehee
I can't help but smile at this cartoon as there are days (way too many honestly) that I feel like Charlie Brown. I hear those working with Paul saying they got it...over and over...yet find out that they didn't "got it."
Why?
My goodness!
There are too many reasons as to why not...such as...
--new care givers lacking experience and training
--slipped past their mind due to something else more urgent
--no money
--not enough time
--received other information that felt more important
--mixed signals
--scheduling
--timing
--LIFE
I raise my eyebrows and say "good grief! not again...sigh"
Then...I pick up the pieces by figuring out where the mis-step happened and begin building another strand that will get Paul where he needs to be.
Ex: Paul and drinking pop. He was not to have any. Then he was only to have one and only rootbeer or sprite...no heavily caffeinated drinks. When I visited with him and his day staff I found out he has at least 2, sometimes more, but that this was ok as it wasn't Mountain Dew. His weight is getting heavier now that he is in a wheelchair and his cholesterol and sodium level have risen to levels that are not healthy. The staff is looking into healthier foods and low sodium foods but never even considered his pop intake.
So...I visited with Katy and she sent out emails to his other service staff and her day staff to monitor this better. Mainly, keep pop to one a day no more than 2.
Something as simple as a dietary change has a major impact on Paul's health and in this case, his kidney and bladder functions. They dropped the ball by hearing 'no mountain dew' and left it at that.
I needed to pick that ball back up and hand it back to them with more specific guidelines.
What is the key to making sure corrections can be made in a timely manner without sending the whole system off its' track?
Follow through
Follow through
Deep meditation
Follow through
Follow through
Breathe
Follow through
Follow through
Exercise...run around the block, hike a hill, lift weights
Follow through
Follow through
Have an ice cream cone
and
Follow through
Follow through
Follow through
Follow through
Repeat.
Upcoming meetings
We have a follow up meeting to the one we just had in December. There were several things that needed to be addressed, which came from that meeting and Mom was able to talk with Liz (the case management team's supervisor).
With my lil sister needing to take care of herself, I have stepped into the "gopher" role. That is ok. It needs done.
With this role, I need to do a bunch of visits with Paul's staff so I know where they are and what is needed for them to continue in caring for Paul. Found that they never received any information from the team of medical people in Kalispell. (no follow through on the sister's part here) Also, talked about things I noticed and that they noticed and coordinated efforts and clarified a few things.
I will be sending a request via email to get the information I need on his doctor's name and phone number so I can contact them and get this information before the meeting on the 28th.
I always hear from my mom and sister that this is micromanaging. I laugh at that. It isn't micromanaging anything when the family is the connecting rod between the 20-some services that work with Paul.
Yes, in theory, his case management and wrap around coordinating services should handle this, however in my experience, they get so bogged down by day to day operations that things fall through the cracks and mis-communication becomes mixed in or no communication.
Paul is not their only concern. He is OUR only concern. It can work well or it can get jumbled and when the family drops the ball on their end look out! My sister and mother have ran into this in the past year and half and are still struggling with having to step up more.
It is NOT easy or simple. It is complex and multi-dimensional with several entities pursuing their own objectives. I honestly feel that this is just the norm of having someone I care about in the situation Paul is in. It is worth every effort, even though sometimes I get drained. Balance is important between Paul's needs and my life.
With my lil sister needing to take care of herself, I have stepped into the "gopher" role. That is ok. It needs done.
With this role, I need to do a bunch of visits with Paul's staff so I know where they are and what is needed for them to continue in caring for Paul. Found that they never received any information from the team of medical people in Kalispell. (no follow through on the sister's part here) Also, talked about things I noticed and that they noticed and coordinated efforts and clarified a few things.
I will be sending a request via email to get the information I need on his doctor's name and phone number so I can contact them and get this information before the meeting on the 28th.
I always hear from my mom and sister that this is micromanaging. I laugh at that. It isn't micromanaging anything when the family is the connecting rod between the 20-some services that work with Paul.
Yes, in theory, his case management and wrap around coordinating services should handle this, however in my experience, they get so bogged down by day to day operations that things fall through the cracks and mis-communication becomes mixed in or no communication.
Paul is not their only concern. He is OUR only concern. It can work well or it can get jumbled and when the family drops the ball on their end look out! My sister and mother have ran into this in the past year and half and are still struggling with having to step up more.
It is NOT easy or simple. It is complex and multi-dimensional with several entities pursuing their own objectives. I honestly feel that this is just the norm of having someone I care about in the situation Paul is in. It is worth every effort, even though sometimes I get drained. Balance is important between Paul's needs and my life.
Thursday, January 1, 2015
Impromptu Meetings
I love...ABSOLUTELY LOVE having impromptu meetings with Paul's services...mainly his wrap-around caregivers at ORI and his Day services at ORI.
It truly amazes me how much a family guardian can find out from just chatting with those who take care of a family member. I think it also enlightens them as well.
So sorry but these two comics are the best!
Sometimes I am Calvin completely oblivious as to what is going on with the day to day workings of Paul's services and with Paul then one conversation and "SWOOSH!" I feel covered in hundreds of snowballs.
Then there are times, due to me being a mediator of sorts and connector-rod, I figure out that one step was not followed through with and I get the communication back moving smoothly by following through and connecting the missing step.
Example: When I was visiting with Mary she was confused as to a comment that my lil sister made about Paul needing 24 hour care. Mom and I were confuse by this as well. As we talked, I found out that there have been no new orders sent from the orthopedic/physical therapist in Kalispell since 2013. However, my lil sister took Paul this past September and those records and orders were never sent to Paul's services...any of them. I have never received any information on these doctors as well. Mary is going to send me the contact information and I will call them and get all records so that we know what was said and where Paul's services need to go in his care.
In this case, both his services and I were working without some very necessary 'ropes' to connect each segment of his care to what is needed currently. My lil' sister didn't follow through (her weakness---my strength) with his services and medical information. She did do the leg work with getting Paul to his medical appointments (her strength--services weakness) however both Stacey and his services lacked the foresight to ask each other what was needed to change his care. (everyone's weakness honestly)
We have a follow-up meeting on the 28th of January and I am going to make sure that everyone has what they need in order to make sure we are all on the same page.
These impromptu meetings or visits are key in finding out what we all need to do to stay together in Paul's care.
I have enjoyed getting to know each person that has been a part of Paul's life. They all have given Paul and our family the greatest gift...their time and love.
In the past 28 years I have worked with 5 ORI day coordinators, 50 to 60 care-givers through 6 home hospice services, 4 state case managers and 3 of their supervisors and 4 state RNs, plus 4 different rental agencies and over 100 different medical professions. Other than about 4 of these I have met with personally over the years and I feel they are amazing. Oh, and yes, most were impromptu meetings. Just love these. The planned ones are a bit of a struggle sometimes. But THAT is another blog. ;-)
It truly amazes me how much a family guardian can find out from just chatting with those who take care of a family member. I think it also enlightens them as well.
So sorry but these two comics are the best!
Sometimes I am Calvin completely oblivious as to what is going on with the day to day workings of Paul's services and with Paul then one conversation and "SWOOSH!" I feel covered in hundreds of snowballs.
Then there are times, due to me being a mediator of sorts and connector-rod, I figure out that one step was not followed through with and I get the communication back moving smoothly by following through and connecting the missing step.
Example: When I was visiting with Mary she was confused as to a comment that my lil sister made about Paul needing 24 hour care. Mom and I were confuse by this as well. As we talked, I found out that there have been no new orders sent from the orthopedic/physical therapist in Kalispell since 2013. However, my lil sister took Paul this past September and those records and orders were never sent to Paul's services...any of them. I have never received any information on these doctors as well. Mary is going to send me the contact information and I will call them and get all records so that we know what was said and where Paul's services need to go in his care.
In this case, both his services and I were working without some very necessary 'ropes' to connect each segment of his care to what is needed currently. My lil' sister didn't follow through (her weakness---my strength) with his services and medical information. She did do the leg work with getting Paul to his medical appointments (her strength--services weakness) however both Stacey and his services lacked the foresight to ask each other what was needed to change his care. (everyone's weakness honestly)
We have a follow-up meeting on the 28th of January and I am going to make sure that everyone has what they need in order to make sure we are all on the same page.
These impromptu meetings or visits are key in finding out what we all need to do to stay together in Paul's care.
I have enjoyed getting to know each person that has been a part of Paul's life. They all have given Paul and our family the greatest gift...their time and love.
In the past 28 years I have worked with 5 ORI day coordinators, 50 to 60 care-givers through 6 home hospice services, 4 state case managers and 3 of their supervisors and 4 state RNs, plus 4 different rental agencies and over 100 different medical professions. Other than about 4 of these I have met with personally over the years and I feel they are amazing. Oh, and yes, most were impromptu meetings. Just love these. The planned ones are a bit of a struggle sometimes. But THAT is another blog. ;-)
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