Need Support As a Caregiver... Posted: 01-18-05 11:19am
Hi, my son is almost 18...He has dmd. He
no longer goes to school and is wheechair
bound and has been in a chair for 6 years.
I don't work because I care for my
son...It's the hardest thing in the world
to deal with,i have suffered depression
ever since we found out he has md..We
found out before he turned 2, due to other
medical problems..Somedays I have a hard
time coping, but I know that I have to do
all things for him..And that's ok too,
because he is my son..But until you live
with a special needs child you could never
fully understand what we all go
through..But i'm thankful for having him
in the moment.
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Lordlancelot
New User, Becoming EHEALTHy
Joined: 23 Oct 2005 Posts: 10 Location: Liverpool
Posted: 10-23-05 12:07pm
Hi I myself have dmd its good that you
help your son I understand its hard to
cope so take your depresion times it by
ten and thats what your son will feel
like, he has to cope with his disability
your depresion and life in a wheelchair
i'm not seying your a bad mother for
feeling that way but look at it from his
point of view any questions just ask
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klutzyazhel
New User, Becoming EHEALTHy
Joined: 18 Jan 2005 Posts: 7
Can You Care For Yourself Posted: 10-25-05 09:17am
Who cares for you? Because my son relys
on me for everything. I was stating that
it's very hard on me. He goes with the
flow never really complains...
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btdawgh
New User, Becoming EHEALTHy
Joined: 14 Nov 2005 Posts: 9
Just Found This Board... Posted: 12-03-07 02:56am
I have two adult children with MD...my
daughter has been in a chair for about
twenty years...her health is not good and
we just spent a few weeks in the hospital
because of breathing issues. My other
child is in his twenties..really almost
thirty..he still walks but falls alot...he
has no muscles in in body really his arms
are nothing but bone..and he has to use
two hands to even raise a cup to his
mouth. I am pretty old ...just turned
sixty last year and I am a single mom
...their father decided over twenty five
years ago...as he said...."It is my
turn"...and he found another life that did
not include his children in anyway. My
children get child support,even at their
age,because they are "adult disabled
children" but the state I live in,(was
forced here while still married)...Texas
does not give any type of 'alimony" to the
ex wife even after twenty-five years of
marriage. I am the one who lived the "lean
years" while their father got his great
education that now gives him a large six
figure income.
Our life is very difficult because I no
longer work outside of the home....as all
you moms know....we do "work" inside the
home....being alone is not easy....and I
guess I just don't allow my mind to digest
that fact. I have no life outside of this
house......I tried "groups" and it never
works...there just are not people my age
who have the responsiblities I
do......they are "single"....children
grown and on their own.....I am not. We
have nothing in common and they just
"don't get it" when it comes to my
children.
I am confident I will live out the years I
have left...alone...but my real concern is
for my children when I die....then what???
That too I must NOT allow myself to think
about.....I live one hour at a time....not
even a "day at a time"....because as you
all know....our "days" are not simple and
at times "a day" can feel like a lifetime
and like it will never end.
If you have someone in your life who loves
and values you....and...your child or
children....give them a Hug....you are
very fortunate.
Just thought I would share....
My best to all of you....and ..if you too
don't have someone in your life just know
that I will be thinking of you and all you
do for your child or children.
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francines brother
New User, Becoming EHEALTHy
Joined: 03 Sep 2008 Posts: 1
caregiving Posted: 09-03-08 22:00pm
my sister lived 11 years with muscular
distrophy. In those days there were known
2 types one dying ages 7-8 or before
puberty and the other living 'til mid
20's. I was the older brother by 3 yrs.
with a single mom and a younger healthy
brother fraternal twin to my crippled
sister. I've read all the blogs and can
relate having been so directly involved in
the caregiving. My mother and I had a
special alliance to survive the
caregiving. Mother age 85 is still alive
having survived 2 knee replacements and
breast cancer in recent years. I know
these times of caregiving are most
exhausting especially if you're most
devoted but in hindsight they are the most
meaningful if that can be of any
consolation. Also this may be hard to
believe but there are understanding people
like me who would be glad to step in and
bring occasional relief and would know
how. Also try to forget and forgive the
puniness of soul of anyone that should
have helped you and walked away they
missed out on a real blessing in disguise
Love to you all
