Caregivers
Burnout
This report is a direct result of my own caregivers burnout
and learning what this meant and how I could bring myself
from that point as well as ways to prevent it in the future.
We hosted a discussion on our email list and our members who
participated agreed to allow their posts as well as the
teaching tools to be posted here at CPN in hopes to help
others who may share the same problem. Caregivers burnout is
does not mean you are a horrible person but left untreated
it can be very serious.
Thank you to all
those that helped participate in this and to all those whom
read this report and learn from it.
Below you
will be able to read this as it was presented to our group.
Hi All!
Here is something I'd really like to discuss with everyone
and share with others their experiences etc. Care giver
burnout.
I have it I've had it for 2 yrs ever well heck probably
longer. But it's when I finally came to terms with it. I
would like to know how many others on this list have dealt
with it know what it is tips thoughts etc.
I am slowly coming out of it and I can say that that was
from myself taking care of my grandmother. I'm getting ready
to work with a 23 yr old whom has paraplegia and I'm finding
it hard to bring myself to doing so.... Once we are done
with this topic I am going to give a report on it on CPN for
others to see as well.. Caregiver burn out has effected just
about everything in my life. This Organization has seen it's
effects. People could tell you that at one time I knew every
member their kids names and the details of their disability
needs. That is not a joke I did. Yes I used cheat cards when
needed but from memory I did. When I burned out.. I lost so
much and I unfortunately do not know over half of you now.
It drives me crazy. I'd like to have that ability back and
wonder if I ever will. When I go to see Amanda I have fears
that I could not and would not have the first clue on how to
care for her. The other night when I went to give her a
haircut, I picked her up I held her for the first time in 2
yrs and I'm telling ya, That was incredible a healing point
for me. Over the next few days and discussions I will type
out some symptom list, some tips and etc while we discuss
caregivers burn out.
Please everyone.... feel free to join in and continue other
discussions as well.
Love ya all.
Dena
dena
don't tell me you have burn out you and linda were big part
of the reson i got be in social work to be advocate for
disabled right now i can't wait to start each day at my
internship at people first lori
Lorri,
Yes sweetie admittedly I do and it's taken me these 2 yrs to
stand up and admit what is happening to me. It couldn't
possibly happen to me... I guess wonder woman fell off her
pedestal LOL.... Have no
fears though Lorri. You my darling would be one of the
inspiration points in my life and it is interesting that you
say Linda and myself were an inspiration to you. You are one
of the people who helped me with your lifestory to know I
needed to let Amanda go. One of those people that will
remind me of all of my works that I've done and that I can
do so much for this world. Even though sometimes for some
people need to continue to care for there children well into
Adulthood those that have great works to do need strong
parents that have the courage to let them out into this
great big world so they to can make a difference. So Lorri,
Thank you for being my inspiration.
I'd really love it if you could tell everyone your story.
From when we met to when you left home to current. Including
the relationship you now have with your mom. =)
Love ya,
Dena
Hello,
I don't post often on the list but here to tell you that i'm
right with you. I have a 5 yr old son with CP, CHD, Seizures
and is ventilator dependent. I also have a normal feisty,
stubborn (still great)2 year old daughter and I am so past
caregiver burnout.
I work full time in an ICU as an Equipment tech for a
pediatric hospital, I also am part of a project at the
hospital where we train residents, medical students and
student nurses on what home life is for chronically ill
children.
I serve on the family advisory board for this children's
hospital and I am working on a website for
special needs parenting.
The training program will be on a break for the holidays, I
only meet once a month for the family
advisory board, but the stresses are coming from working
full time, being a single mom and having two kids that are
always getting sick. (Flu season) I am having a very hard
time getting in my hours at work and although I am fortunate
enough to have supervisors who are flexible with my
schedule, I kinda need themoney....lol.
My son has been hospitalized about two times since I started
working at the hospital last June, prior to that he had been
hospitalized about 5-6 times for this whole year. (I can't
wait for this year to be OVER!!!!) I recently moved to a
bigger place and well I am just at my wits end here because
I also have a daughter who is battling a bad ear infection,
(not as high tech as my boy) but she won't take her
antibiotics and I am out of energy to force it down her
throat. Now we have to go and see a Ear, Nose and Throat
specialist. UGGGHHH!
When my son is hospitalized I have absolutely no one to care
for my daughter and so I am forced to make choices of
leaving my son overnight at the hospital. (Mommy guilty
feelings moving in real fast!)
I get no help from their father, not even 10 dollars to buy
diapers. My symptoms you ask?
Ha!
Let's see
Irritability
Frustation
Insomnia
Abrasive personality at times
Crying, most of the time (well more than most)
Mood swings (Any body got some Paxil here! lol)
Well the stress level is obviosly very high. I deal with it
the best way I can. I count to 10 but it ends up going all
the way to a hundred. Do I feel better? No. lol but I calm
down. I listen to a lot of rock music. At least Im not the
only one screaming here. lol And well I joke a lot.
Can you tell? My friends say to me... "How do you do it?" I
reply, "I wish I knew!!!"
Since my son is Ventilator dependent, I do have help from
home health nurses. But that is a stress all on it's own.
Sometimes it makes more work for me than if I was home alone
with my two kids.
No two nurses who come into my home to care for my son
provide the care the same way. I have everything set up,
signs on the wall, schedules and lists but it all seems
pointless sometimes because they will just do whatever they
think is right in their eyes.
At the level of stress that I am under the little things
bother me. Like when a nurse mistakenly leaves the medicine
port on my son's G-tube extension (feeding tube) open and
then all his formula spills on my couch. Ok ok accidents
happen but I could at least be notified of it. No what
really happens is a nurse will wipe it up and try to cover
it up like nothing happened but i have to sleep there with
my son and you can really smell it. FYI Pediasure smells
horrible after sitting around for a few hours.
Those are the little things that get to me and others. A
friend once told me that I let the little things
bother me because I could try and get control over these
"little" things, but it is really the big things
that bother me and since I can't change or control them
(being a single mom of two kids, one with special needs,
having a very sick child, living within my financial means
and not where I really want to be)
This was here conclusion of why I let the little things bug
me. It could be true, I won't deny that. I just have a hard
time coping and considering the situation at hand I happen
to think I have good coping skills for all that I deal with
but I sure could use some ideas here.
I have a page on my website called "Coming to terms" it will
deal with grieving and other coping ideas and strategies. I
would like to post this report once it is done on my
website, I have a lot of hits and I am working on moving my
site over to a paid hosted site. If anyone is interested in
having their ideas posted on my website, I would be more
than happy to do that since it will definitely help others
like you and me.
If anyone would like to ck the site out, you can find it by
going to
http://geocities.com/courageoushearts/index
Ck it out and let me know what you think. ok Take it easy
and try to stay sane all!!! lol
mom of marcus-courageousheart
Well I
will tell you I laughed I cried I said UH UH to every word
you said. I used to think I loved my plate full because it
always was and when I had nothing to do I'd walk around lost
so I'd fill that empty spot with a quickness. I always hated
the days any caregivers came it was always so
stressful. In fact. I avoided caregivers until about 6 yrs
ago because I always felt they were such an invasion and it
would be more struggle than it was worth. LOL NOW I am one.
GO figure. a paid one
that is. I've always been a non paid one. I'm sure a few
members will totally see themselves in you. We've had the
same lives for a long time and personally though with my own
situation I've thought maybe I was the only one that ever
went through it. As Brigitte has stated what are the signs?
And feels she is well past it... She is identifying them
greatly.
Signs of Care givers burnout
Let me give you the list..
Warning signs of burnout....
Beware and be aware of these warning signs of burnout.
1. EARLY-
To eager to take on
more than a reasonable amount of work
(foot note. HA who ever said I was eager and that it just
wasn't me.
giggles) belief that you are immune to burnout; expecting
perfection
from yourself at all times; dislike of compromise.
(footnote: I think that the dislike of compromise is well a
normal
human characteristic personally. This would be above and
beyond the
norm.)
2. Middle:
Depression, including changes in eating and sleeping
patterns; irritability; fatigue; skipping meals or personal
breaks;
increasing workload while enjoying it less; using to much
alcohol or
other drugs.
3 Late:
Cynicism; callousness; apathy toward
client/residents/child; panic attacks; severe depression;
loss of
physical or emotional control in the form of crying
outbursts; or
physical abuse.
Now after I've posted these I want to state that I am hoping
to get us a report together that will actually address
parents/caregivers of special needs children. Yes there are
a lot of similarities period with care giving of the elderly
vs. children and young adults. HOWEVER there are some
serious differences and I believe it's those differences
that make our jobs a bit tougher to cope with when
dealing with the rest of the world. Now I could be wrong
here but through all of this that is one feeling that hasn't
gone away.
The "if you would just get out of my face and out of my way
and see that I am a "reliable" parent and let me do my job
I'd eliminate 98% of my stress." I'll be the first to admit
it if I'm wrong on this
theory I'll change it, but I just can't see it. I have a
friend that cares for her daughter around the clock on the
weekends and I have severe insomnia from years of doing that
with Amanda. So I know
there are down sides to all of this... But as caregivers how
do we deal with others outside of our home. How do I or my
child get the respect we deserve that makes so much of our
stress by it always being there. You stated Brigitte about
the Formula on the couch. Or the nurses not following the
care plan. Do we just ignore that or do we stand up to it.
Let me give you an example that is outside of the
home.
I was in Wal-Mart last night, now I've personally always
been treated well in Wal-Mart right down to the door checker
apologizing for having to look at my bags, lol but last
night my 5 yr old was riding
on the end of the cart I had just told him he needed to get
off because instead of being safe he was being unsafe trying
to pop wheelies. Not appropriate and won't be tolerated
"Right"? I knew that the store was insane. I didn't want him
just walking around and he does nothing but Holler he is a
big boy in the cart. I'm not putting him under the cart, can
you imagine fingers smashed under wheels???? So I do
something I actually don't like personally but with safety
measures it wouldn't be bad. When he failed to keep those he
had to get off and was coming to stand on the front part
with me so I knew he was safe. Well shopaholic I am saw the
cutest ballet type slippers crocheted. I had told him to
come around took hands off the cart to look..... He jumps
back on the said cart and almost has it through his tummy. I
grabbed it before it did and smashed my hand. Proceeded to
help him up check his booboos and escort him to my side of
the cart. Very much dealing with the situation. Well as it
is
happening two employees are walking by. Both panic, but the
only thing out of one of their mouths was.... "guess its
time not to be on the cart that way" My jaw dropped. You see
I'm in customer service, I know the rules I know the Oh no's
you didn't just say that. And this woman did it and
proceeded to continue about her business. She didn't check
to see if either of us were hurt or needed assistance. I
was seconds from blowing up at her and decided.... Get my
toilet paper and lets go. put everything else back and that
was the end of that shopping adventure. Well almost.... I
went and made my purchase and proceeded to customer service.
I told the story to the Manager. I said you know in all the
years I've shopped at Wal-Mart I can't say this has happened
before. And told her... She asked for the employees name and
I said I was to busy picking my teeth and my son off the
floor to notice. But gave her a description. Of course she
laughed and asked if I was in customer service. I said Yes.
That was a no no and I called the woman out on the floor
over it.
Now in Care giving and dealing with others how often do we
do that??? Nurse comes in (giggles our nurses on list know
I'm not picking on them but they could probably tell me the
times they have seen this) You set out a list on the wall
you have your child's care plan carefully laid out in their
care book. Only to find they haven't followed it or left the
feeding tube open and ensure stains all over.
Isn't this something that just like the Wal-Mart story we
should call out? YES, most absolutely YES.. We as
parent/caregivers are looked upon as much as they are for
what care is given and if you allow them to do what they
want instead of what is in the care plan... You are letting
the client/ or in our cases child down and possibly putting
them in danger depending on the situation. How you deal with
it is up to you and each situation. Either by talking to the
caregiver personally OR going to their supervisor but it
must be done.
Another way to elevate that is be picky about your
caregiver. Let them know from the start this is a test
run... If your not happy with their performance or if your
child doesn't seem to adapt to them that you will have to
take on another caregiver. It's a hard spot for me to tell
you that but now I've been on both sides and it is
important. As well as them feeling comfortable. That is only
a few of my comments and I'm sure I'll have a zillion more.
I found myself an interesting site in my search for all of
this.
http://www.caregiver.com I don't know yet how much I'll
get from it but found a few interesting tips and stories
from it. Looks like the magazine has lots of celebs. That
will be interesting to find out their point on this
magazine. LOL
I also want you all to realize something. Not taking care of
yourself and having untreated caregivers burn out is Life
threating. OR rather can be. My mother took care of my
grandmother prior to me for the last 7 yrs she didn't or
rather couldn't afford health care, and (love ya mom but I
told ya lol) wouldn't just walk into the hospital. I
probably wouldn't have either.... or said I'll do it
tomorrow.
Today... My mother has congestive heart failure. They are
figuring was because of.... severe sleep deprivation. When I
got back over here from Yakima and we got my mother to the
hospital. We got her there just in time. She too like my
grandmother was dying. I learned a lesson in it too. When
someone tells you this this and this is wrong... don't
ignore them just because they couldn't go to the
doctor. OR you don't understand the situation. Listening is
A major key to our survival of caregivers burnout. My mom
literally worked her self to death caring for my grandmother
and not caring for
herself as well.
I will close for now. I am looking forward to hearing more
from all
of you... This for myself is giving me such a release... And
it
feels great!
Dena
I wonder
what are the caregivers services in your area Dena i will
share my story over Christmas break Lori
Hello
everyone,
With the Christmas rush and a new client I've just been a
bit out of sync and for some reason. Yahoo wasn't telling me
there was messages only members. Weird... So apologies to
those of you whom had posts out and weren't seeing them go
through. I wanted to be sure that we started our new year
out right and did continue our discussion on care givers
burnout. I'd also like to get some ideas from each of you
for us to have some weekly discussions. So if you have
something you want to learn more about let us know here on
the list and I'll set up a schedule on the calendar here at
yahoo groups and we will dive into some learning
conversations. Last we talked about signs of caregivers
burnout...
Preventing Caregivers burnout
Now I'd like to discuss some ideas of how to prevent it.
I'd really love to hear some of your ideas or things you do
to help yourselves as well. 1st and foremost Take care of
yourself everyday. Caring for yourself includes developing
daily practices that help you stay healthy. These would
include things such as eating right, getting enough rest,
and attending to your own health. It can also mean doing
things that find you refreshing and pleasurable. That may be
a bubble bath, coffee with a friend, talking a walk, reading
a good book, listening to music, gardening and many other
things. It is a normal part of being a human to occasionally
feel angry, sad or frustrated. These feeling must be
expressed in a helpful way. Such as
*Talking
to a trusted friend. Talking can help you vent your
frustrations and anxieties in a healthy way and avoid taking
it out on the one you care for.
*
Join a support group
for caregivers or meet other caregivers through your child's
school. They will understand your feelings and have probably
experienced these emotions as well.
*
Maintain your own life interests. These interests were there
before you were a caregiver and will be there after you are
not. If you act out your negative feeling on your loved one.
Get help. These
feelings are a sure sign of doing to much. The hardest thing
I have had to learn in 21 yrs of care giving was... That I
was not just a parent I was a caregiver. For me that
realization came after I was no longer Amanda's primary
caregiver and I started caring for others. So I had to learn
that it wasn't just
something I would do with no questions asked because that's
what parents do but it was my job. So your personal life
needs to be separate from your care giving responsibilities.
Now the next thing
I'd have to say with that is.... How in the world would I do
that as a parent or caring for a loved one of which I have
done both. I included my child in much of that looking
back.. One of Amanda's and
my rituals on Saturday mornings were.... Breakfast in bed or
on couch while we watched cartoons in our jammies... She
wasn't my child with Cerebral Palsy at that moment but
rather my cartoon be lazy as can be Saturday pal. I didn't
have the daily grind at that moment I just had my daughter
and we shared a very special moment. I told her the other
night that I was going to ask if I could spend the night up
there one night and her and I just do some of the fun things
we've always done and spend time together. That to me is my
time of respite pure joy in enjoying something I love to do.
Be with her. And I might add something she very much was
excited at the prospect of. I also used to wheel her out in
the back yard with me while I pulled weeds and she would
help me by holding the weeds on her tray and then pushing
them off in a bucket. I mention these things because I do
know that
as a parent it is so hard for us when some of our kids are
so involved that it seems that is all we ever have time for.
Amanda loved to dance. OR watch me dance. Oh boy YES I love
to crank the music while I'm cleaning house. So the little
things became my joy and they soon mounted to big things
that made each moment with Amanda that much easier. I can't
say that all the doctor the therapists and
the opinioned teachers ever made our lives easier.. (sorry
to our pro's in the group but honesty is a must in the
development of our lives) To this day I still struggle over
how I could have made that
part of our lives any easier. I am learning as a caregiver
to others besides my daughter how to cope with that aspect.
It always feels like such an invasion to have a caregiver.
to ensure that they treat
your child or yourself as you would want to be and I can say
being on both sides of the coin has helped tremendously..
I've learned right off the bat if I don't feel comfortable
with a client you can pretty much guarantee they don't feel
comfortable with me either and I've been able to let a few
clients know this and assisted them in their search to
finding someone they can feel comfortable with. Ok back to
the subject. I forever side bar lol. Be proud of what you
are doing and accomplishing.
Our society sometimes overlooks the demands and challenges
of care giving and more often then not. Therefore it is
crucial that you take pride in what you are doing.
*
Give yourself a pat on the back for
the work you do each day.
*
Accept compliments
when they are given. You deserve recognition for what you
do. If the recognition is not available from outside
sources, find ways to treat yourself.
*
Join a support group or spend time with other parents. They
can also provide you with affirmations for your efforts. Why
is caring for yourself so important??? As one of my teachers
taught me in a class recently... and she also was my mothers
instructor... She is now seeing the parents she trained
years before that she is now teaching their children and
grandchildren...
Care giving is taxing no matter what way you slice it. I
have the worst back you've ever seen... I spent 19 yrs of my
daughters life carting her around pushing her wheelchair up
stairs down stairs carrying her places. Lifting her
positioning her you name it I did it. I didn't have the
benefit of learning if I'd worn a back brace or a lift belt
OR even using a Hoyer lift I could have prevented a lot of
it. Now it's take to ibuprofen and off I go to my clients
house. I can't care for those I'd have to lift or carry and
won't unless I found a way for them to be able to use a lift
or a lift belt. My mother has congestive heart failure
probably primarily caused from sleep deprivation, no medical
insurance to get herself seen by a doctor and the absolute
fear that if anyone knew what she was going through they
would put my grandmother in a rest home... So you see taking
care of yourself will greatly reduce the risk of you being
the one needing to be cared for as well as easing your role
as a care giver. That is all I'll talk about tonight to give
you all a chance for your inputs or opinions. I'd like to
finish this up this week by talking about some of the basic
things and ways to care for yourself. But this as any
conversation will be open to opinions or support from here
to eternity. On another part of this for our individuals
with CP Your thoughts and opinions are welcomed. It might
even be useful to hear your pet peeves about past or current
caregivers you have as a means for parents to consider while
caring for their own child.
Again Happy New Year everyone!
Lotsa Love Dena
Dena,
I've been wanting to drop in my two cents about your
burn-out topic. My thoughts are on the subject of guilt. I
know that many mothers feel some degree of guilt because
their child has CP. I'm not saying that this is realistic,
quite the contrary, it is just a natural thing for a person
to feel, just like
one common stage of dealing with a death is to be angry at
the person who died. These guilt feelings have recently
surfaced for me. I've known that they were there, but
thought that they were not a serious problem. I'm finding
that they are perhaps the cause of some of my "self-abusive"
behavior, like staying up till all hours of the night (like
your Mom). Instead of being logical about these feelings,
like I thought I was, they are bothering me so much that I
have a hard time thinking about it at times. I have to bury
myself in daily activities to get by at times. I have a
therapist that I see every other week
and we have started talking about this. I've been on meds
for depression for a couple of years now. I do OK, but I do
not take care of myself. I have to be super-mom. I am
constantly sleep-deprived and my brain just doesn't function
at top speed when I'm like this. I don't know if this is a
problem, conscious or not, for many of our members. I
suspect it is a large contributor to burn-out because it
causes a person to put another individual's needs above
their own more often than is healthy. Leah was born at 27
weeks. Her twin sister died the day they were born.
Reasonable or not, that guilt is there.
All the Best to our wonderful membership for the year 2004,
Dianne
Dena,
All I can say after reading you post is: you are AWESOME, my
friend!
Amanda is so lucky to have you for a mom, and I am thrilled
that you still want to go and have your Saturday morning
breakfast on the couch in your jammies.
Care giving is tough, especially as parents age and children
with CP become bigger and tougher to handle. A friend of
mine is 55, has Spastic triplegia and lives with her 78 year
old mother and her 50?
year old brother. The brother rarely helps my friend or his
mother around the house..let alone sees that my friend is
having more and more problems caring for herself due to
arthritis and reduced mobility. My friend has told me, any
number of times, that her mother has said, even twenty years
ago, "As long as there's family, you won't live on your
own." I feel for my friend and am concerned what will happen
to her when her mother (with heart and other health issues)
is no longer able
to help her.
God Bless you, Dena. Have a super, safe 2004 everyone!
Betsy
44 Spastic/Quad CP
Lived on my own for 16+ years
Dear
Dianne.... Girl I so love you and Leah... I've always read
your posts with much excitement... Once again you are
correct in you thought process and I have to so thank you
for reminding me that I
guess I've gone past the guilt Or for a better fact I NEVER
aloud myself the guilt.. Not till Amanda was gone, Now I
grieve and I grieve often, for the should a would a and
could a's... the gonnas and the fears of her being all alone
and not having me to tell the world what she is trying to
say or what she needs or what a jack rabbit someone is for
being so ignorant. I am most positively not wonder woman
though I made a rather smashing one for 19 yrs of her 21
yrs.
So I think we will take this discussion just one step
farther after all because Dianne brought a valid point up...
Guilt is a part of it. I've been reading up on some caring
for your elderly/sick parents and
love ones. Interesting stuff and admittedly I have to take
and sort it and chop it up to apply it to Amanda and
disabilities but it has helped bring some things to mind for
different things to do with her. That may be something those
that are interested in this topic consider doing. Another
that has helped me is getting inside the mind of Authors
whom tell their stories in the books they have
written about their lives dealing with disabilities. That is
for the research of course that I am doing on my book I'm
writing but it was interesting to see how it applied to
this.
Anyway geeeeze I can sidebar LOL
Lets talk about Grief...
Which is Guilt as well...
Life has many challenges that can lead to feelings of
loss. Grief is how we react to that loss. Grief isn't just
something you think about in death. Grief for other reasons
can impact how you feel how you
think your relationships and even your physical self. The
process of grief is different for everyone and there are
several stages to that. The amount of time people grieve
also varies. I never truly focused on grief there were
occasions that I did while Amanda was growing up, Begging
God to give her her voice feeling that she didn't deserve
this that it had to be my sins that caused this. But they
were short lived and never done any more with than put on a
back burner till I melted down...
From my caregivers manual for being a state paid caregiver I
learned that there are 5 stages of grief. I'm going to quote
them now for completely as it states in the manual. Remember
this manual as lots of books don't always have the exact
answers for us dealing with disablities and it is important
to take
from them what we can use and apply well at least that's the
way it has worked for me. =)
The five stages of grief
To work through your own feelings of grief, it is
important to be aware of the five stages of grief.
1.
Denial is the first stage. The person is usually in a state
of shock and does not accept what is happening. You may deny
the condition that has incapacitated your client/resident
(in our case loved one). You may grieve for the way they
"used to be." You may alternate between feeling hopeful that
they will recover and sadness over the irreversible
condition. It is a continuous process. Just when you have
adjusted, the person's condition may change again.
2.
Anger is the second stage. When the person can no longer
deny what is happening, it is normal to become angry. You
may be angry about the situation you are experiencing. If
you find you are directing your anger towards the
client/resident take steps to stop this immediately.
3.
Bargaining is the third stage. The
person now wants to make a deal to postpone what is going to
happen. This can be a deal with God the doctor or even the
caregiver. You may feel guilty about your inability to
change or prevent a situation. Avoid feelings of
responsibility for your client/resident's illness. Do not
feel bad for having your good health. Enjoy the chances that
you are fortunate enough to have.
4.
Depression is the fourth stage. When a person begins to
accept the loss they may become withdrawn, not wanting to
talk or be with anyone. You may experience physical symptoms
of stress and burnout including weeping, sighing,
exhaustion, changes in eating or sleeping patterns.
5.
Acceptance is the fifth stage. The person has come to accept
that the loss is going to happen. This does not mean that
the person wants to go through the loss, only that they know
it will happen.
Although the timeline is different for everyone, eventually
you will come to accept the circumstances you are dealing
with. This involves acknowledging the impact of the
condition on the client/resident and the impact it has on
your own life.
As I stated I was typing it directly from the manual so
sorry if client/resident is so... informal ... I could think
of a million different ways to list that..... LOL I do what
to also type up what it says about
working through feelings of grief and loss.
Here are action steps you can
take to work through any feelings of
grief and loss you may experience as a caregiver.
1.
Confront your feelings. You are experiencing all of the
emotions that any healthy person would feel in your
situation. Look at your expectations of what you think
"should" be happening. Are these
expectations realistic?
2.
Find ways to forgive yourself. Learn to feel comfortable
about deserving good things that happen to you. Accept that
some things are beyond your control.
3.
Turn to others. Share with an understanding friend or with
other caregivers. This will also help to relieve feelings of
isolation. If you prefer to speak with someone who does not
know the client/resident, consider talking to a therapist.
4.
Take care of yourself. Exercising is
powerful release for anger, guilt and worry. Let yourself at
the humor in life Try renting some classic comedy routines
on video or read the Sunday comics
Wow has the tired eyes hit me everyone. I think we will stop
off here
but look forward to continuing
Night night all.
Dena
Thanks
everyone for the info on caregiver burn out. Sometimes it is
so hard to go through what we are going through right now
and I really respect some of you who have adopted CP
children. I do not know what stage it is that I am going
through but I really feel guilty about the fact that I am
not doing enough therapy for my 7 month old son, and for the
fact that I never alerted the doctor enough who was late and
resulted in his birth asphyxia. I have been so depressed, my
weight has come down so much ever since I gave birth last
May. I am depressed that I am not able to communicate with
my
hubby who seems to think I am wasting my time and efforts as
it is only inevitable that he will eventually die. I missed
work for 5 months but have decided to go back because Bryant
my son's expenses have been daunting!!! My mum takes care of
him while I am at work but she is not much
of a role model as she is depressed herself. I worry as I
know that we have a family history of depression (my uncle
committed suicide). I wonder whether I will ever overcome my
depression!!!
Thank you for reading..
Val
dear
Valerie I have 7 year old with cp he can not walk or talk
but he is a joy to my heart please don't give up on your
baby they are smart kid thanks
I will
write more later, but I just wanted to say I am here for
you. I have pretty severe cp, and I too am dealing with
depression. Hang in there, please!!
God bless,
Kathy
Hi Val-
I have a 6 year old with spastic quad cp. He cannot walk,
talk, sit, feed himself, etc... I too was extremely
depressed early on in his life. I always worried about his
future,etc. My best advice to you is just to take things one
day at a time. Love your little guy with all your heart and
do all you can
for him without being too hard on yourself.
Kelli
Dear
Val,
I have cerebral palsy and chronic pain. I can say honestly
that most parents of children with cerebral palsy get
depressed, just about not having the child that everyone
expects them to.. The child that is not reaching milestones,
while friend's children in baby and toddler groups seem to
be miles ahead. I don't know where you are located, but see
about getting some respite care for your
son. Find someone else to look after him other than your Mom
so that you can have time to breathe. There are respite
programs for young children to older teens and adults with
cerebral palsy in different states and provinces. There
might be nursing care that you can access if your son is on
a government insurance plan for children with disabilities
(Medicaid waiver, etc). There are programs in Canada, and
all over the world as well. Regarding your depression and
feelings of guilt that you caused your son's condition
somehow: You might benefit from talking to a social worker
who is familiar with working with families and children who
have disabilities. This way you can work
out some of your true anguish, grief, anger and frustration.
A social worker that specializes in this area can also help
you find therapy and special programs for your son-- and
help in filling out paperwork for any governmental programs.
They might find you a parent support program to go to, so
you can talk face-to-face with other parents in the same
situation.
Talk to the doctor who diagnosed your child's cerebral palsy
about all of these issues, and see if they can get you set
up with a social worker. If that person is not available,
ask your therapists where parents go for help, and perhaps
your general practitioner can refer you to someone.
Your husband telling you that perhaps your baby will just
die is not a good situation, either. He needs to be more
supportive and positive, but may just be going through his
own (unexpressed), stages of grief. Talk to him. Remind him
that the baby was conceived out of love, and needs his love
more now than ever.
Remember that you are a special parent, and that God chose
you to parent this little one for greater reasons than you
may know at this moment. He will be a true blessing to you,
and all those who meet him. He will surpass the expectations
that physicians set for him. His smile will always warm your
heart.
Take heart in that. Remember, that to love your son, you
must love yourself as well. Take time for yourself, even if
it is to catch a few minutes nap while the baby sleeps. Make
time to read a few pages in a book, go to the hairdresser,
etc. Your baby will thank you for this later, as he will
have a more
well-balanced parent.
Write anytime, as we are here to be there for one another.
Jenn
Here's the url address to the National
Respite Locator Service.. A must have for all caregivers.
http://www.respitelocator.org/
Lee (MdRD)
Amen
Jennifer! You are a true blessing from God!!
Jenn,
I just wanted to say that your response was wonderful. It
gave me chills and also helped me out in a lot of ways.
Thank You for that.
Joanna SAHM to Rachel 4 1/2 CP, Alexis 2 1/2, and Emily 8
months
Dear
Val,
I have a seven your old CP girl. She is now in school her
mom and myself took as almost six years to be out of
depressions. We have now a new baby girl and we love both
our daughters very much . The older one is going to school
but can not walk. Living in Ethiopia, Africa were all the
services you are
getting for granted are absent it is an every day struggle
to up bring a CP child. My wife quite her job four years ago
to care for our child and i am always providing close
support for my wife and daughter. we are now happy with the
close support of each other and work very hard to provide
all the necessary support for our child.
I hope you will be Ok and you need to take care yourself to
provide the necessary
support for you little child.
Fassil
Dear
Fassil,
I can see you love your daughters very much and I hope you
don't take offense. Language often helps define things and I
think it is very important for us to use people first
language when we talk about our loved ones with a
disability. It may seem like a small matter but saying a
"daughter with CP"
focuses on your daughter and not her CP. My CP daughter
places the emphasis on her condition and not on her
personhood.
I have had to learn this. My daughter is 18. She does not
have CP. She was born without a disability and became
disabled at age 12 when she was struck by a pickup truck and
suffered a very severe brain injury.
Brain Injury mimics every neurological problem and that is
why I am on this list as well as several other disability
lists. Our focus is on in home and community support options
for individuals and
families with long term or lifetime care challenges.
On burnout, it happens to all of us. One thing different
about joining the disability community after living without
disabilities is the recognition of what was lost or taken
away. I am not only able to project what my daughter would
be doing today if it were not for her accident but I also
have actual
memories and videos of her running, walking, standing,
playing, speaking up, and fully participating in community
life.
We believe that with adequate , flexible, and consumer
directed supports all individuals can enjoy a meaningful and
quality life in the home and community.
To learn more feel free to visit
http://www.tetto.org and
http://www.mycommunitycareteam.com
Kind Regards,
Frank
Maybe I
am not a good person to address this since I have never had
trouble with depression so don't really understand it. I do
understand what it is like raising a child with a disability
since I have 9 and have chosen this route because they are
all adopted. Sometimes I feel like I am maybe not doing
enough as far as therapy or whatever and then it comes to me
the best thing I can do is love these children. I do my best
to get them the services they need but I feel the thing that
has made the most difference is that I truly love them. I
think it may be easier for me since I was in my forties
before I took my first "special" child. I have to give up a
lot because of my kids but then I hear of people having
trouble with relationships, people who really have no one
who cares about them, people who have children on drugs or
other severe behaviors and I feel so blest, My children
return my love in so many way and I always have someone I
can sit down and hug. As for their future, I have plans but
my biggest response for people who ask me what will happen
to my children when I can't care for them anymore is what
will happen to them now if I am not here for them. None of
us knows the future and we can't change the past but we can
give today the best we have. My advice is to accept this
very special child. I don't believe God makes mistakes,
these children are blessings. They live in the world
differently than the rest of us but I believe this world
would be a poorer place without them. Marty
I am
glad you spoke out like you did about caregiver burnout. It
is nothing of which to be ashamed!
My mother-in-law cared for her severe CP daughter, Kimberly,
for 33 years. Kimberly passed away on 12/15/03. The family
was told that she'd never live to be a teenager but that was
not God's plan. When Kimberly died her mother wondered if it
was something she did that caused the death! She should be
proud of herself that she was able to be the caregiver for
so long (her husband died in 1976, 2 months after I married
their son) by herself. She was getting to the point at age
65, 1 kidney, diabetes, bad knees, that caring for Kimberly
wasn't an easy thing. I am a firm believer in the saying
that "when your number comes up you're going to go". In
other words, God's plan for your life is
written down before you are ever born and when He is ready
to call
you home you will go. For Kimberly & her family, God knew
that the time was right.
Thanks for being up front about caregiver burnout!
Kathy
Hi
everyone,
Thank you Eddie, Kathy, Kelli, Jen, Marty and Lee for your
words of encouragement and assuring me that I am not alone
at all. I live in Malaysia and had the opportunity to meet
two parents with the same dilemma, Fezia and Irene and I
guess they are my support right now.
These 7 months have been so long, it almost feels like an
eternity. I bring Bryant for CST sessions, physio and we are
now in the process of trying NRT. I am also hoping to try
HBOT soon. I do not think I would have the energy for the
the IAHP programme however and I find them to be very
expensive too. As I said my hubby who is a GP doesn't
believe in any other therapy except for physio but I try to
schedule them so that he could come along. He has tried to
follow some of the programmes and I am hoping this will be
one of the way to patch up our strained relationship. I
absolutely have no idea how he deals with this as he is not
the kind who would open up. He feels that it is not wise of
us to prolong our child's life as they are suffering but I
have told him that we are doing all this so to make things
more comfortable for Bryant as all the therapies are not
meant to
heal but to help the child cope with feeding, etc.
Over here, we do not have financial programmes or insurance
for problems like what we are facing. We only get meager tax
deductions and programmes are hard to come by. I am not sure
about respite programmes especially for a child as young as
mine and nursing care is extremely expensive over here.
MY son Bryant cannot smile or express any emotions but I do
love him with all my heart. Thank you for showing me that I
am normal and that I am doing the best for him. Thank you
for letting me vent even though my problems are trivial
compared to some of yours. I am so glad to be part of your
group and really appreciate it. It is only when I read your
posts I am so encouraged and relieved and I have learnt so
much from your experiences. Thank you for sharing and for
being so open to me. I do not know how to thank you all
enough but I hope you know what I mean.
Thank you.
Hugs,
Val
Some good, informative links
for caregivers:
http://agrability.sdstate.edu/care/careresources_websites.htm
http://www.caressentials.com/
http://www.care-givers.com/pages/spotlight.html
http://www.nfcacares.org/
http://www.pcl.lib.wa.us/ChildCope/Coping%20with%20Children's%20Reactions.htm
http://www.supportplus.com/caregivers.cfm?keycode=SGJ07
Coping with the Stress of
Care giving:
http://www.theithacajournal.com/news/stories/20021012/opinion/273840.html
Hi Marty
and all,
I wanted to say something about caregiver burnout. I think
Marty , that you will understand this because of your
situation. My husband and I have adopted 2 boys with severe
CP and do "special needs" foster care and have had as many
as 5 in our home at a time. Not even close to 9 but very
stressful at times. Just because you adopted your child it
doesn't mean you don't feel burnout just like everyone else.
Sometimes a "friend" will say to me, "well, you did ask for
this and knew what you were getting into". Well, yes I asked
for this and consider it a God-given privilege to have these
children, some forever and some for a short while. I love my
children with all of my heart and when they begin to return
that love you know you have seen a miracle. BUT, that
doesn't mean by any stretch of the imagination that I don't
get burned out from time to time. I definitely do but it
only means I am human. Having enough time for all the
children is a challenge I face on a daily basis. I do the
best I can. People have told me too that we aren't "spring
chickens" anymore and need to think about what will happen
to these children when we can't care for them anymore. Well,
this is a concern that all parents of children with special
needs will face someday not just the ones of us that adopted
or do foster care.
Marty, be well and know that someone out here thinks you are
a special Mom doing a special thing and doing the best she
can. At least you cared enough to try. I know where and what
our Kids all came from when they came to us and believe me,
they are in paradise with you, even if they don't get your
undivided attention every day.
Just my thoughts,
Laura (RD for MS
Val,
Honey, please see a therapist about your depression. Your
husband sounds like he is not currently able to support you
and neither is your Mum. You need someone to talk to about
your situation and help you sort out the feelings that you
have. I have been seeing someone (not a psychiatrist, they
don't help, but a counselor) for a couple of years now and
it helps a lot. It would also help you to look into some
sort of medication for depression. I'm taking something and
it also helps. I went through a number of medications before
I found the one that was right for me, but there is almost
surely something that would help you. Depression (especially
that which runs in families) is often a chemical imbalance
and it's certainly not helped by difficult family
situations. Don't
give up on your precious son and don't feel guilty for not
doing 24 hr. therapy with him. Easier said than done, right?
Please get some help and lean on the people here for support
too. If you are working and have medical insurance, it may
cover the cost of the counseling. Take care and let us know
how you are
doing. Dianne
Dear
Valerie, Why do you feel like your son is dying? He is 7
months old. We are all dying. My daughter is 11 years old
and growing stronger. Have some faith and believe that he
will be someone that you will love and maybe reverse that
depression in your life! He is very special and if you give
him a chance he will love you like no tomorrow!
VAL, IT
IS NOT UNUSUAL FOR YOU TO HAVE ALL OF THESE FEELINGS I HATED
TO SEE NEW
MOMS WHEN I FIRST HAD RICKY MY HUSBAND HAD A HARD TIME THE
FIRST YEAR WAS THE
WORSE OUR MARRIAGE WAS ON THE VERGE OF ENDING UNTIL WE WENT
TO A COUNSELOR AND
IT SEEMED TO HELP. MY HUSBAND CAN NOT SHOW RICKY ENOUGH LOVE
RICKY IS NOW 4 AND
USES A K WALKER AND HE IS DELAYED IN HIS SPEECH GOOD LUCK
AND E MAIL ME ANYTIME
DONNA
Hello -
my name is Karen and I am a parent of a 6 yr old with a
severe traumatic brain injury (due to a reckless driver when
our child was 2 yrs old). I'm on this chat group because of
the similarities of the disabilities. There are a couple
books that have helped me along the way to help me cope and
maybe it may be helpful to some of you. Each of the books
short stories written by other parents. You may find it
comforting to know others are going through the same thing.
Changed by a Child, companion notes for parents of a child
with a disability by: Barbara Gill A Special Gift, a
devotional for mothers of children with unique challenges
by: Carrie T. Gruman-Trinkner You will Dream New Dreams,
inspiring personal stories by parents of children with
disabilities. By: Stanley D. Klein, PhD and Kim Schive
Dear
Karen,
My daughter Maria also suffered a severe brain injury at age
12. I like you am here because brain injury mimics cp,ms,mr,
Alzheimer's.Parkinson's etc. Also I am working on a cross
disability organization that advocates for in home and
community supports for persons with disabilities and equal
rights for all. Thanks for the info.
Kind Regards,
Frank
http://www.ttto.org
http://www.mycommunitycareteam.com
http://www.tbinet.org
Dear
All,
I wished to give you a perspective from that of an older
person with CP. As a 20 year old college student with a
disability, I experience my own form of burnout at times.
One of my salvations is funnily enough my physical therapy.
I am able to attend 2X/week and they treat us like family
(there
are many long term neurological patients at this practice).
It really helps to go there when I feel down. I also have
learned to trust in friends and things like this support
group in order to vent my feelings. All of you must remember
that it is NOT your fault that you o someone you love has
CP.
Do not beat up on yourself and make plenty of time for you
in the midst of all the hell. Remember it is not healthy to
keep feelings bottled up, vent them as often as needed. If
we do this we can have our bad days and stillbe useful and
kind to those we love and care about.
David
Hi All,
Tomorrow night I'm going to be doing the last few
discussions on caregiver burnout. We've covered alot of
discussions and had some wonderful results from it. Next
week hopefully I'll get everything
put together to add to the website. You all have been
wonderfully inspirational on this if this discussion goes on
past this time that is welcomed. I'll start our next
discussion on Wednesday night. Still looking for additional
ideas for discussions in the future.
Love to all, just tired tonight... Been freezing LOL burrr
Washington
is cold.
Dena
Hi all,
Sorry I didn't get this out I've been a little SNOWED in and
dealing with this and that over two days.
I went to the doctor today after obtaining my mri results to
find that L5 and L6 in my back are shot. One is bulging and
pinching the nerves but good and the doctor is now referring
me to a orthopedic
surgeon.... GRRRRRRRRRRR. BUT in light of all that I feel
really happy to be able to talk to you about this last part
because if anyone would have ever really discussed these
things with me, just maybe I wouldn't have degenerative disc
disease and being in need of
an operation.
Taking care of yourself
physically as well as emotionally is very
very important.
Proper diet
exercise
Flexibility training.
We lift we pull we tug we heave we cook we clean and I'm
sure a few people have lugged their not so heavy child up
and down stairs etc. Just like a runner stretches and does
flexibility stretches we should practice them every day
before we start these tasks. If you need to use a lift belt
or a Hoyer lift don't be ashamed and don't think it's an
embarrassment. If your loved one is able to assist LET THEM.
It is so easy for us to do it for them because it might
happen faster that way but it hurts you both their self
esteem and your body breaking down sooner as well as your
emotional well being. I'm one of those whom say it's easier
and faster to do it myself, so to sit back and wait for
Amanda was always a bite my tongue situation.
Here are some additional informational
tips and information for you
Burnout prevention
Here's a great list of things to do to Avoid Work-related
stress and
burnout(generic title *smile*)
*
Know your
limitations. Do not take on more than you can realistically
do.
*Don't
skip breaks, lunch , or other fee time. Be sure that someone
is available to care for your loved one while you're away.
*Try
to have a say in your workload. (note input by me. The
hardest thing for a husband and wife team is to work
together in this situation.... Either can feel challenged on
the go gettem attitudes
that we can develop when dealing with special needs it is
extremely important to work through it and work together) If
your workload is too heavy ask for assistance from your
partner, family, or case
manager.
*Talk
to others. If you're feeling anxious or stressed, let them
know. Ask for help.
*Develop
friends in other professions.
*Cultivate
outside interests and hobbies. Physical exercise and mental
relaxation help alleviate stress.
*Be
aware of how you feel on the job(in our case home) Signs of
physical and emotional distress are all to often ignored.
*Be
aware of your alcohol or drug consumption. If you're
drinking more than you did, cut down or seek help.
*Don't
be afraid to say "no". Only you can determine how much work
is too much. You don't need an excuse to refuse to work
overtime.(of course that's tuff in our shoes but if its to
much seek help)
Here are a few simple actions that may help you keep
negative feelings of tension under control. Remember as you
read them that success will not come from a half-hearted
effort, nor will it come
overnight. It will take determination, persistence and time.
TALK IT OUT
When something worries you, talk it out. Don't bottle
it up. Confide your worry to some levelheaded person you can
trust. Talking things out helps relieve your strain, see
your worry in a clearer light, and to see what you can do
about it.
ESCAPE FOR A WHILE.
Sometimes, when things go wrong, it
helps to escape from the painful problem for a while. Lose
yourself in a movie or a book, game, or a brief trip for a
change of scene. Making yourself "stand there and suffer" is
a form of self-punishment, not a way to solve a problem. It
is perfectly realistic and healthy to escape long enough to
recover breath and balance. Be prepared to come back and
deal with your difficulty when you are more composed and
when you and others involved are in better condition to deal
with it.
WORK OFF YOUR ANGER.
If you feel yourself angry all the
time, remember although anger may give you a temporary sense
of
righteousness or even power, it generally leaves you feeling
foolish and sorry in the end. If you feel like lashing out
at someone, try holding off that impulse for awhile. Let it
wait until tomorrow. Meanwhile, do something constructive
with the pent-up energy. Pitch into some physical activity,
such as gardening, cleaning out the garage, carpentry, or
some other do-it-yourself project, or work it out playing
tennis or taking a long walk. Working the anger out of your
system and cooling off for a day or two will leave you much
better prepared to handle your problem.
(NOTE:
most of my anger was with the professional field and them
not listening to me or treating my daughter like a human
being. So I had to learn how to do the above as well in that
situation but I did one different point. I'd walk away and
then write down what things made me angry and then go vent
that anger constructively then go back reread and rewrite it
so that I could actually talk to the person
later about how I felt.)
GIVE IN
OCCASIONALLY.
If you find yourself getting into
frequent fights with people and feel obstinate and defiant,
remember this is the way frustrated children behave. Stand
your ground on what you know is right, but do so calmly.
Make allowances for the fact that you could turn out to be
wrong. Even if your dead right, it's easier on your system
to give in once in awhile. If you yield, you'll usually find
that others will too. The results will be relief from
tension the achievement of a practical solution and great
feeling of
satisfaction and maturity.
DO SOMETHING FOR OTHERS.
If you feel yourself worrying about
yourself all the time try doing something for somebody else.
You'll find this will take the steam right out of your own
worries and even better give you a great feeling of having
done well.
TAKE ONE THING AT A TIME.
For people under tension, ordinary
workload can sometimes bee unbearable. The load looks great
that it becomes painful to tackle any part of it, even
things that most need to be done. When this happens,
remember it's a temporary condition and you can work your
way out of it.
Take a few of the most urgent tasks and start doing them,
one at a time. Set aside all the rest for the time-being.
Once you dispose of the most urgent tasks, you'll see that
the remainder is not such
a "horrible mess" after all. You'll be in the swing of
things and the rest of the tasks will go more easily.
If you feel you can't set anything aside to tackle things
sensibly, ask yourself: Are you sure you aren't
overestimating the importance of things you do
SHUN THE "SUPERMAN" URGE.
Some people expect too much from
themselves and get into a constant state of worry and
anxiety. They think they are not achieving as much as they
should and they try for perfection in everything. Admirable
as this idea is, it is and open invitation to failure. No
one can be perfect in everything. Decide which things you do
well and then put your major effort into these. They are apt
to be the things you like to do and give you most
satisfaction. Give the things you don't do as well your best
effort. Don't take yourself to task if you can't achieve the
impossible.
GO EASY WITH YOUR CRITICISM.
Some people expect too much of others and then feel
frustrated, let down ,disappointed even trapped when another
person does not measure up. remember, each person has
his/her own virtues, his her own shortcomings, his her own
values and your own right to develop as an individual.
Instead of being critical about the other person's behavior,
search out the good points and help him/her develop them.
This will give you both of you satisfaction and help you to
gain better perspective on yourself as well.
Make yourself "available". Many of us have the feeling that
we are being "left out", slighted, neglected, and rejected.
Instead of shrinking away and withdrawing, it's much
healthier and practical to
continue to "make yourself available". Make some of the
overtures instead of always waiting to be asked.
SCHEDULE
YOUR RECREATION.
Many people drive themselves so hard that they allow
themselves to little time for fun, an essential ingredient
for good physical and mental health. They find it hard to
make themselves take time out.
Setting a routine and schedule for definite hours for
recreation will help. It is desirable to have a hobby that
absorbs you in off hours, one into which you can throw
yourself completely and with pleasure, forgetting all about
work.
Well I hope in some way some of this may have helped at
least a few of you. It's ok to say I need help and to take a
break. So many of you have stressed the same thing I've felt
many times that when I sat
back and enjoyed every single moment of Amanda's life just
as I would any of my other children that life wasn't so hard
and the burnout not as intense. I learned over the years not
to stand over her caregivers thinking I was the only one
whom could do it though honestly I only found a few whom
actually could do it just the way I would.. I felt that part
was important because how could they feel it was respite if
I was going behind the caregiver doing everything. =) I
actually didn't have caregivers till Amanda was in her teen
years and I still don't regret that but I do wish I had
taken more time to be a person not wonder woman with or
without the caregivers. I have no regrets just ways I'd
perfect my wonder woman ways. lol.
Thanks to each of you whom took a moment to post your
comments and help develop this segment for our disability
library and to help each of us one more step along the way.
Lotsa love,
Dena
Dear Frank,
Thank you for your comments, English is not my first
language but really what you stated makes sense.
Thank you
Fassil
Thanks
so much for taking the time to read about caregivers burnout
and the reality of it. I hope that if you find yourself
shaking your head and saying uhhuh to any of this that you
will seek out help as well as taking some of these tips to
heart. If you need more help on ideas and suggestions as
well as support feel free to email us at the link below or
go to our cplinks page and look under caregivers for a whole
list of websites that also address the problem.
