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Forgetting the caregiver

    People are always asking questions about my husband. How is he doing? Is the weather bothering him? Did the storms bother him? Most of the questions are not well, yes and YES.  Often times people forget about the caregivers for the ill. They don't understand the strain it puts on the ones who care for the sick. Now,  I'm not complaining, just enlightening. We as caregivers do a lot more then just give meds or food. It's a minute by minute job. One minute I might be in the kitchen preparing a meal and then have to run and sit on the floor holding his head til the seizure is over. Then I have to help him to his chair, with the help of Scoobie of course.                                                                                                                                                                                                                                               When we go shopping I can't fully engage because I'm watching his every move making sure a seizure isn't coming. I can't tell ya how many times we have been at the grocery store and I've had to hold on to him while pushing the buggy and rushing to finish my shopping. Then there is the noise issue. Sitting at a light and someone pulls up with the bass blaring. To most it is just annoying but to us it can cause a whole days trip to be ruined. I turn up the air and try to find an escape route because the bumping of bass can lead to a bad seizure. Once we were in the doctors office and a girl was playing with ring tones on her phone. We spent a good hour in one of the back rooms dealing with a seizure just because of something so minor.                                                                                                                                                                                                                                                                       The physical toll it takes on one is great but the emotional is worse. To see your loved one suffer and knowing all you can do is just be by their side is hard. Now,
I'm not a healthy person by any means but this isn't about me, it's about caregivers. I've seen my father in law exhausted but continue to take care of my mother in law because he loves her. I've seen my mom frustrated and tired because she was taking care of my grandmother. I've seen my brother and sister in law emotional worn down not knowing if their little girl would come home from the hospital. Its a lot to handle but none of us would ever walk away because the Lord put us here to take care of our loved ones.

    Just remember next time you ask a caregiver how someone is doing don't forget to ask four simple words, How are you doing?

Comments

  1. THIS IS ABBY.
    So true about this. As a caregiver, it is a lot to do. It is for me more emotional than any thing else. I do watch my mom’s movements even at our home. Any noise can start a seizure. I hate thunderstorms because of what happens to her. Other than that I don’t care about them. Caregivers need support. They need a hug every now and then. Sometimes you need to cry. I know that because I do at night when no one is watching. I give mommy the support she needs because it’s my nature. I love her so much that it worth the emotional stress that comes along with being a caretaker. I love you all very much. And Aunt Rach, you hit the spot. Love, Abby.

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  2. Mother Goose wants you to know how much she loves you and appreciates all that you do. My son’s wife is a very loving and caring woman. She has always had a place in her heart for family, friends, children and animals ( she is way ahead of me on that one). We have known her since she first started coming to church with her mother in the 1980’s. My son fell in love with her her then and that has never changed. She has always been a very loving person and has a place in her heart for her family, friends, children and even animals ( I am afraid that I fall far behind her in that department). My son Joshua fell in love with her the first time he saw her and that has never changed. I think he was ten years old at the time. I will add that the feelings were not reciprocated for a few years but he was persistent and eventually she gave in. Somehow she fell in love with him and has stayed by his side through sickness and health, for better and for worse, and there has been a lot of sickness and worse. We never can know when we take those vows what life will bring our way. Rachel has loved our son through all of those and has been such a blessing to this mother through the love and care she has shown to our beloved son and grandchildren. Rachel is not well herself but has continued to care for Joshua and their children. I can’t spell what it is that she has but I believe it is some form of arthritis and she also suffers from migraines. She has never let her own health stand in the way of caring for our son. As tiny as she is, she has thrown herself wholeheartedly into caring for her husband. It takes a lot of strength to try to stop him from punching himself in the head and face, to help him to sit up so that he can breathe, to try to prevent him from throwing himself onto the floor, and many other things that I cannot begin to describe. Her love for him is so great that there are no words to describe. I don’t believe there is anything that she would not do to try to help him. The sad part of all this is that there is little that can be done to make a person with Dystonia feel comfortable. The wonderful thing is that our Lord has given each spouse the grace necessary to try. I thank God for Rachel and Daniel for everything that they do every day to love and care for my children as well as my husband who is always trying to find something to help me. God has indeed blessed us with precious caregivers and there are not enough thank yous in the world to express our gratitude. Asking them how they are doing is so inadequate when their hearts are broken because they feel that they can never do enough. All I can say from my point of view is thank you for all you do, thank you for all of your love and care, thank you for sacrificing your comfort to try to give me some. I try to express my love and thanks although it is not nearly enough for me to do. Perhaps for them a phone call or a text to let them know that you are still thankful for their friendship, an occasional visit, an occasional food dish so they don’t have to cook that day, or something that you know would be meaningful to your friend. Let them know that you are praying for them and love them. I thank God for each of my children and their families, I thank God for the loving husband that he has given me, I thank God for my precious friends who come to visit me, and I thank God for loving me. I pray that my children thank God for his gifts of grace.

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  3. Mother Goose didn’t do a great job of proofreading her previous comment. There seems to be some redundancies in it that I missed. I must have been more tired than I thought as it was erlate at night. I had planned to mention Joshua’s children Alainna and Tyler as well as Rachael’s daughter Abby. They all know what it is to be a caregiver as well. They know what it means to live a life in which plans seldom can be carried out the way they had hoped. They have had to care for their parent when most children get to live a different life. Most other children or even adults cannot begin to understand. Abby has been caring for her mother for several years. She not only helps her with the Dystonic Storms but does the cooking most of the time and helps care for the family’s goats and sheep. She can whip up some good desserts and biscuits. Those are just some of her skills taught to her by her parents. She is a home school student taught by her mother. She has learned sign language so that her mother can still teach when she can’t talk. Alainna and Tyler are older but have to keep an their father to watch for signs of a “storm” so that he won’t hurt himself. Like Abby, Alainna can hardly hardly remember a time when her father was well. They don’t have much in common with other children their age so it is not possible for them to act like children or even interact with them. They don’t want your sympathy but you might try to understand. Treat them more like loving adults because that is what they have come to be. The Lord has given them a different life but that doesn’t mean that they don’t want what they have been given. Love means something different to them - it is given and received not just received.

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