Compassion Fatigue Awareness Project

[AbuelaLoca]

[font=Arial, Verdana, Univers]I just wanted to put this resource out there since so many of us are in the care taking phase of life right now! Please take care of yourself first![/font]

[font=Arial, Verdana, Univers]http://www.compassionfatigue.org/[/font]

While the effects of Compassion Fatigue can cause pain and suffering, learning to recognize and manage its symptoms is the first step toward healing. The Compassion Fatigue Awareness Project© is dedicated to educating caregivers about authentic, sustainable self-care and aiding organizations in their goal of providing healthy, compassionate care to those whom they serve.

[font=Arial, Verdana, Univers]Compassion Fatigue is a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper."[/font]

[font=Arial, Verdana, Univers]Dr. Charles Figley
Professor, Paul Henry Kurzweg Distinguished Chair  
Director, Tulane Traumatology Institute
Tulane University, New Orleans, LA[/font]

 

[SoulRaven]

Thanks for posting it although I always read to "take care of yourself first" and respond "and when would I have time for that". Our son with Down syndrome will turn 31 years old next month, functions mentally like a 40 month old, and by the time I take care of his needs, I am too tired to do anything else. Good news is that he started a day program and when they open their residential in the next 2 months, he will be a resident in that home! I told the state I could no longer care for him, I am too tired.

I know most look at this here from the standpoint of caring for a parent, in the world I have been in with my son, it is equally difficult and with funding for programs for both the disabled and older people has been pared to the bone in many places. Waiting lists for services for people with developmental disabilities can be 10+ years in some states.

So, I am nearly out, fingers crossed, and anyone that is waiting and needing services will have to probably become aggressive to get them contacting your congress people and being willing to relate the need to anyone that will answer the phone involved with social services. We have a LOT of older people, really older, in KS, and the situations that I have seen are very sad.

 

[CautionToTheWind]

I've been there a time or two. Definitely put on your oxygen first.

 

[XFILE36]

"Compassion Fatigue is a state experienced by those helping people or ANIMALS in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper."

Man, I just saw your thread and am so there right now, and have been through...too much with my cat who I was told to euthanize twice in the past 2 1/2 years. People think that caretaking a sick/elderly animal isn't the same as a human, but in some ways it can be worse. I think some of us get more attached for various reasons to animals. My little guy has been here for me longer than any human I've known, and I just owe him, and love him so much. It's so hard though, most times. now. This morning I was thinking about how difficult it is...felling very depressed, when he woke me up and I knew the struggle to get him to eat was just beginning, AGAIN. I probably throw away more food than he eats. This is also a huge financial burden including his meds every day. Thanks and like your new pic.

 

[Cammalu]

Sorry about your kitty X.


Sent from my iPhone using Tapatalk

 

[SoulRaven]

In the case of my son, I have to always guess what might be wrong or what he wants, like with the two senior dogs, so not have a verbal communication with the one being taken care of it makes it much more difficult I do believe.

I, too, am sorry about your cat.

 

[XFILE36]

In the case of my son, I have to always guess what might be wrong or what he wants, like with the two senior dogs, so to not have a verbal communication with the one being taken care of it makes it much more difficult I do believe.

I, too, am sorry about your cat.

Snow Gypsy,  Thank you and I too am sorry about your son, but that's great news that he is going to be taken care of in the residential facility.  Thirty-one years is a very long time to take care of your son, but I am sure you are all that much better for it, stress and all.  :angel:   You must feel very tired and I can relate. 

Yes, that is exactly it.  Not being able to know what they are thinking, wanting, is the hardest.  If only they could tell us.  It's always a guessing game.  I told someone yesterday that maybe some day someone will come up with an invention to allow animals to speak, and in the case of your son, I hope they come up with a cure or some other medical progress to make communication easier or make him better.

 

[VanKitten]

I took care of my Mom for the last year of her life. She was completely unable to communicate...couldn't talk. Couldn't write.

It was always a guessing game...trying to figure out what was happening. Combined with dementia...I would get her to the doc and he would ask her if her back hurt...and even though she was clearly in pain...she would shake her head NO.

To this day I never learned what was causing her so much pain. The Doc gave up. Hospice was very good at making her pain free...but of course, they do not diagnose or attempt a cure.

But...it always leaves you feeling that you could have made it better if only you could have been able to understand.

 

[GotSmart]

Having worked in assisted living facilities, many times it is better as the client is able to thrive by having to think and communicate for themselves.  

I miss my "boys"  they were always honest about what they felt.

 

[user 423]

I retired in March but for 2-1/2 years before that I drove a wheelchair van for a non-profit. One of our 'customers' was an organization that provided light manufacturing jobs and support for people with a wide range of disabilities. For some clients they also helped arrange placement into group homes such as the one your son will enter.
It was a challenge sometimes to deal with emergencies such as seizures,etc. Some of the riders I got to know very well as I drove them back and forth to their regular 40hr/week jobs. Lately, you read of 'helicopter moms' and some of my rider's moms were just that! After getting info on how to deal with this or that, most of the time there were few problems.
Last year, one of the young men (34) was distraught because he was being moved from his parent's home and into group living. It was very stressful for his folks but they had decided it was the best thing for everyone. Talking with his mom, it was plain that it was very difficult for her to deal with the mixture of guilt and relief.
Moms and dads that have provided for their special needs offspring to me are the saints of the world!

 

[user 423]

Our son with Down syndrome will turn 31 years old next month, functions mentally like a 40 month old, and by the time I take care of his needs, I am too tired to do anything else. Good news is that he started a day program and when they open their residential in the next 2 months, he will be a resident in that home! I told the state I could no longer care for him, I am too tired.

I retired in March but for 2-1/2 years before that I drove a wheelchair van for a non-profit. One of our 'customers' was an organization that provided light manufacturing jobs and support for people with a wide range of disabilities. For some clients they also helped arrange placement into group homes such as the one your son will enter.

It was a challenge sometimes to deal with emergencies such as seizures,etc. Some of the riders I got to know very well as I drove them back and forth to their regular 40hr/week jobs. Lately, you read of 'helicopter moms' and some of my rider's moms were just that! After getting info on how to deal with this or that, most of the time there were few problems.

Last year, one of the young men (34) was distraught because he was being moved from his parent's home and into group living. It was very stressful for his folks but they had decided it was the best thing for everyone. Talking with his mom, it was plain that it was very difficult for her to deal with the mixture of guilt and relief.

Moms and dads that have provided for their special needs offspring to me are the saints of the world!

 

[franqmichele]

Thanks for posting it although I always read to "take care of yourself first" and respond "and when would I have time for that".  Our son with Down syndrome will turn 31 years old next month, functions mentally like a 40 month old, and by the time I take care of his needs, I am too tired to do anything else.  Good news is that he started a day program and when they open their residential in the next 2 months, he will be a resident in that home!  I told the state I could no longer care for him, I am too tired.

I know most look at this here from the standpoint of caring for a parent, in the world I have been in with my son, it is equally difficult and with funding for programs for both the disabled and older people has been pared to the bone in many places.  Waiting lists for services for people with developmental disabilities can be 10+ years in some states.

So, I am nearly out, fingers crossed, and anyone that is waiting and needing services will have to probably become aggressive to get them contacting your congress people and being willing to relate the need to anyone that will answer the phone involved with social services.  We have a LOT of older people, really older, in KS, and the situations that I have seen are very sad.

Your struggle is all to common. Congratulations on finding residential care for your son. Blessings to you

 

[StarEcho]

I know what you mean about trying to find services and the scarcity of such!  My mom (Alzheimer's) has come to live with us due to a crisis at my brother's house where she was aggressive with him and my SIL.  She was in a psych facility when I went to get her.  Naively I thought, no problem, I'll just get her services where I live and all will be well.   It's not.  She's been here almost 2 months and has gotten steadily worse to the point where she has been aggressive here as well.  Broke a solid wood Thomasville dining room chair because she was so mad.  Just picked it up and threw it down and broke it.  Then proceeded to go for the lazy susan and all the contents on that.

The problem is that it seems like no psych services are available for anyone on Medicare.  If I wanted to (could) pay for it privately then no problem, but to get help that is paid by Medicare is impossible it seems.  Six weeks after my first call, I have a phone intake interview with a psych practice in a town 45 minutes away.  If they deem it necessary to see her they might after the phone call.  Cardiology was 2 months out as well as Neurology.   Heck, even a colonoscopy that was marked "urgent" got scheduled for a month out!  And the ER's wonder why they are overused!  

That ended up how my brother got her admitted to a psych facility where he lives.  When she inevitably got riled up, he called the cops, and when they came, it escalated the situation even further to the point they strapped her to a gurney and took her to the ER and from there they shuffled her off to the psych ward. She was trying to manipulate by threatening suicide so that was the magic word to get admitted to get help.

So unless I want to do the same to my mom.... I feel like I'm in hell myself.  Wish me luck with this phone call today.  And with the home assessment for Medicaid tomorrow.  With my luck, the same mom who can't bathe herself and puts her clothes on inside out and can't talk coherently will suddenly be able to take care of herself so then no medicaid help.  If that happens I'm done.

 

[Queen]

^^^^ Remember the "gold standard" in psych care for rapid access to treatment is "risk of harm to self or others", especially self harm.

 

[XFILE36]

So unless I want to do the same to my mom.... I feel like I'm in hell myself.  Wish me luck with this phone call today.  And with the home assessment for Medicaid tomorrow.  With my luck, the same mom who can't bathe herself and puts her clothes on inside out and can't talk coherently will suddenly be able to take care of herself so then no medicaid help.  If that happens I'm done.

Good luck with your mom.

 

[VanKitten]

Sadly, often the only way to get any help is to send the person to ER, and then refuse to take them back. As long as they can be proven to require 24/7 care...the hospital cannot discharge without a 24/7 care plan. Often families at the end of their rope have no choice but to stand their ground and refuse to take Mom (grandma, grandpa, whoever) back. This could mean a placement 100s of miles away.

But...woe to the parent with an adult child that is in desperate need of psychiatric help! That same hospital will only keep them for 14 days..then discharge..to the street. Claiming that outpatient services will suffice... however, there is no available slot for 4-6 months

Congressman from Virginia had a son who was in and out of psychiatric units...with no placement available for residential. Son one fine day shot Dad and himself....just 5 days after discharge for the umpteenth time. Dad survived..son did not.

Ever since President Ronald Regan began shutting down psychiatric hospitals..the number of beds went from 1 in 3000 people in the population to 1 in 100,000 people in the population.
Placement is just about impossible in any timeframe that is remotely reasonable.

 

[rvpopeye]

Wishing you the hoped for outcome ....