Thursday, May 22, 2014

Caring for our Caregivers - by Sheila Clark

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 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!)