I am a wife and mom. Been married to my best friend for almost 27
years. He is my rock, my nurse, my pastor, my wheelchair pusher, my
medicine grabber in the middle of the night. He is everything to me. He
is also a wonderful dad to our adult daughters. One of our daughters has
moved away and has her own health problems that are very serious at
times and she needs support too from her family. And my youngest
daughter has special needs. She has been in and out of Duke hospital her
whole life. To say our plate is full is an understatement. It is
running over especially since I have been sick. It will be 4 years this
November since my GP/DTP took a turn for the worst.
I am at the
point now that flares are not an issue cause I seem to be sick all the
time. Some days or moments the pain and nausea are not as difficult, it
is more like I can hide it better some days than others. And hiding it
is a huge thing for me cause of my family. With all that they have on
their plates....my husband is a fireman, my oldest has her own health
issues and is over an hour away from us and then my youngest is trying
to cope with a brain injury amongst other things...if I can protect them
from my illness I do all I can to do that. I think it is harder for
them sometimes. Being a caregiver to both my daughters for many years, I
know what is involved in being a caregiver. It is a very difficult job
and can be very lonely.
My youngest daughter is afraid I am not
going to live much longer. That breaks my heart. She has been talking
about that lately. She has a learning disability that makes it very hard
for her to understand what people say to her and she is pretty much in
the dark around anyone that is talking. We are her translators. She is
very smart and one of the most genuine people you will ever meet. Not
jaded in anyway. SO, when she speaks....we need to pay attention. She
has a sense about things that is very much a gift from God. So, these
comments she makes is concerning. Not that I think she is predicting my
death but the fact she is already thinking about it how to handle it.
Like she is preparing herself.
My oldest worries about me all
the time. But she is not well either. I protect her the most. She is
very close to me, we are so much alike. I think it actually physically
hurts her to see me this sick. I worry about her so much.
And
then there is my husband. He tries to hide his worries from me and the
girls. He is so brave. I pray for him the most. But I see how his
shoulders have dropped, the gleam in his eyes is fading, he is not
sleeping well, he is very tired and has a very , very stressful job
being the driver of a ladder truck with the fire department. He will
listen to me for as long as I need to talk, need to be held while I cry,
rock me in his big recliner on days that I just need to be held, wipes
away my tears, gets on his knees by the bed and prays for me and our
family. He is a real gift from God. I am so blessed.
Us moms or
dads. Aunts, uncles or daughters and sons....our families are suffering
with us. Some have more support than others. Any support we get either
family or friend, it is so appreciated it. I think that if we can do
anything to help our loved ones to cope with our health we should try.
Try
and plan a special dinner for them. Call their friends and plan a
kidnap to dinner or a ball game for your husband. Plan a sleepover for
the kids. Leave little notes here and there to remind them how much you
love them and appreciate them. They love us and do this for us out of
love and deep concern. A caregiver has a tough job. We can do little
things to lighten their load or just brighten their day. Send a card to a
friend that always calls you. Write letters to your children or spouse
for them to read. Keep a journal for them to read one day. Anything that
you can do to help your caregiver will not only help them but you. We
all need to help each other out. And with GP/DTP we are often very
isolated.
Love you all very much and pray for us everyday. We
need to be there for each other and our caregivers. This illness is
ruthless. And we know it can take a life so quickly. We have all lost
someone very dear to us, some of us have lost many.
Hope this
has help in some way. I am right there with you all. I get this illness
and the scary side to it. I get the long days and nights in pain and
nausea that will not go away. I get the no phone calls from those you
thought would be by your side no matter what. Those that have stayed
need a huge pat on the back and often. Like I said , a little note
hidden in a special place. A hug. Make an effort to get up, get dressed,
put on some makeup for them. Just seeing us up and looking the best we
can makes a huge difference, not just for them but us. I know that
taking a shower may require sitting on the bottom of the tub til we can
get the strength to finish our shower, but we can make these simple
efforts to help our family cope. And I think when it is mom that is
sick, it is so hard. I have a 2 children that have life threatening
illnesses, and having a child so sick is very heartbreaking. But when
mama is sick, things just don't run as well. You get a lot of lost
looks. You see the sadness in your children's faces, you see that loss
of hope in your spouses eyes or your partner. When we spend so much time
in bed we have tons of time to think. I spend a lot of my time reading
my Bible, talking to God all the time, watching uplifting movies. We
can take those times to write notes and cards. Draw pictures for the
kids. Color with your children in bed. I love to color with my youngest
daughter. We turn off the tv, listen to some " Jesus music" and just
color. Small chat, but time together is priceless. Books to read to
them. Cards near by to write cards to our loved ones and caregivers. And
maybe pick up a hobby where you can make gifts. I love to needle point
and that is my way of giving back to those I love so much and help me.
If you are a member of a church, ask the pastor to call your spouse and
chat with them. Maybe set up a lunch with the pastor for them to talk to
away from the house. And there is one person we need to thanks more is
our doctors. If you have a supportive motility doctor and a good family doctor
you are blessed. And even if they are hit or miss when we visit them in
the office or hospital we need to remind ourselves that this field of
medicine must be so frustrating for doctors. They go into medicine to help
heal people. They have a servants heart, most of them. A card to them
would mean the world to them, trust me. A real heart felt letter letting
them know how much you appreciate the long hours away from their
families, the long hours of research, seeking out grant money for
research...etc. Nurses that call you back. P.A.'s that are just as great
as your doctor. They all need a reminder that they are appreciated. I think
we can sometimes put too much pressure on our motility doctors because
there is no cure. They deal everyday with patients that may never get
better and could die. That is a heavy load to carry. So, send them cards
too. That means so much to them.
OK, I am going to end this
blog. I am tired, just took a marinol, feeling relaxed and not so sick
right now. Going to close my eyes and enjoy a little relief.
God Bless again and love you ALL!
Sheila Clark
We
need to take care of our caregivers the best that we can. They love us
and that is why they have stuck by us and never left our side. No matter
if you only have 1 person or a huge family, they all need a huge thank
you and support too. Where would we be without them? I hate to even
think about that. I am so blessed. We all are. We might not see that,
but we are blessed if we have just 1 person that loves us so much to
stand by our side and help us.
Stay strong my GP/DTP family. NEGU! ( Never, Ever Give Up!)
