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Sicklysami88

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Reply with quote  #1 
So i have been battling this syndrome for about 6 years. I am the primary caregiver for my grandmother (81). When in an episode i am not able to take care of her or any of my normal responsibilities. Which makes me feel guilty, or useless. While im sick the dishes pile up, the house becomes a disaster area. In my house there are 4 people, and 3 dogs (1 dog needs daily medical attention) medications go ungiven, meals get skipped. The longer im sick the more annoyed the people around me get. I understand it, but i already feel so guilty and it makes it worse when they ridicule my lack of housework/caregiving. Does anyone else go through this guilty feeling? And does anyone have any tips on how i can better explain to them that i just cant do these things while im so sick? Also any suggestions on how i can get them to try and help out with the responsibilities that i can't manage to deal with?
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ginny

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Reply with quote  #2 
How noble of you to be your grandmothers caregiver and how sad to be made to feel awful about yourself when you get ill.

At your grandmothers age you should be able to get some help for either volunteer or low cost (depending on her circumstances).  Try Elder Services in your area for suggestions.  The Geriatric Social Worker at your local hospital is another source for pointers.

Many Senior Centers offer a day care type of help.  We have a local bus that stops at the home of in-need seniors and transports them to the Senior Center.  Once there, the person has the opportunity to interact with others and participate in appropriate activity.  

The other people in your household need to have someone who understands CVS speak with them about your condition.  Is your doctor or doctors nurse/ NP/ PA agreeable to speaking with family members?  Have they read the Empiric Guidelines and other papers on CVS?

Maybe the best way to have your family members understand why you cannot (and should not) handle chores when sick would be to help them remember how dreadful they feel with a common cold and also how helpless & miserable they are when they have a stomach virus. Personally I cannot think of much, if anything, worse than vomiting.

I hope you can work with your doctor to try to get your CVS under control so you can get on with your own life and not need to be the caregiver to a family of adults and 3 dogs.  The local pet rescue society or maybe your vet might be a source for emergency volunteer help with the dogs.  There might be a volunteer in your neighborhood to step in when you are unwell.

I don't know your grandmothers state of inability to care for herself.  My boss is 83, and many of my coworkers are between 70 and 80.  I assume your grandmother is disabled.  By todays standards, 81 can be an age with full function or -- as in the case of my mother- others age more rapidly than their chronological age.    
 Please let us know how you are doing.

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ginny CVSA Moderator
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wynnak

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Reply with quote  #3 
Great recommendations. 
Getting others to understand is a challenge. I like to liken it to the worst case of food poisoning that someone has ever had. Where you no longer EVER want to eat the food that made you sick. It wants out and out and out until you are literally drained. That just explains what you go through.. As for the Why.. which is really what people can't understand. CVS is a brain-gut disorder. You brain is not sending the proper impulses to the stomach. Or Can't. So it is like a migraine attack (if they have had migraines) or a flare up of.. whatever may plague them... It's about them relating to to something. But it is still temporary. I agree that a medical provider may be of some help if you can get the others in the house to go to an appointment with you. 
I admire you for taking care of your Grandmother. I wonder why the others don't help out. I would hope they would chip in.. but sometimes it is addressing this with them. 
Are you getting care for your CVS? Seeing someone to help you manage it? 
I know that it is hard to not feel guilty for not being able to do things. You have both sides of the coin. You have the condition.. so that makes you feel guilty. My son apologizes the whole time he's sick. There is no reason to. It is your body doing it. Not you. Then you have the caregiver side. That you have so much to do and feel bad if you can't. But the first rule of Caregiving, is you have to take care of you too. If we don't, we tend to breakdown more easily. Take care of you. You have to be healthy enough to take care of someone else. 



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Blynda
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Sicklysami88

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Reply with quote  #4 
First let me start with thank you for the suggestions and replys. I am still in the learning phase of the disorder myself. Ginny, my grandmother physically is capable of careing for herself but mentally has checked out. So she needs reminders or suggestions more then the physical side of the care. Also we have looked into some services and she doesnt qualify. The family within the home is my uncle and boyfriend. My uncle (57) is extremely unreliable. If im asking him its a 50/50 chance hes going to actually follow through. My boyfriend helps alot, but also deals with mental health issues, (as do i). Ive tried explaining to them how it feels, but they just dont understand it. I do have a G.I specialist I've been working with him off and on for 2 or 3 years. Ive gone through a few procedures. Ill be going for an upper gi series this week. Wynn, i do the same thing, i apologizes over and over again when I'm sick. Also i just recently read about it being considered in the migraine spectrum. thank you both for suggesting bringing my bf to an appt to learn about it. That i will try to work on, or find him some reading on it. Its so nice to have someone who understands, because im the only person i know who gets sooo sick. Then i saw this forum and felt a bit of relief to find people who are going through similar situations. Thank you, thank you, thank you!
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jojo2059

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Reply with quote  #5 
Hi Sam, so sorry to hear about your delemma. I like all the suggestions being posted for you & your family. You are a treasure to be caring for your grandmother. However, you need help with her, the house & the dogs when in an episode. May I asked what mental issues does she have? The reason I ask is maybe she can qualify for IHSS In Home Support Services. Where they will pay you for taking care of her or try to help find you caregivers to care for her. Good luck finding a solution Sam. Your not alone. Be strong and advocate for yourself.
Sincerely,
Jo
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Sicklysami88

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Reply with quote  #6 
My grandmother only started showing signs of depression after my grandfather passed away almost 5 years ago. But she was never officially diagnosed. So im not sure that route would work. We attempted elder services but her income was just over the allotted amount for services. So far my episodes have been kind to me and my household is in order. Which im thanking my lucky stars for. I had my worst episode ever in august it lasted 3 weeks with only 1 day of relief. Im just getting back things back into order. Thank you all again for the suggestions.
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