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November 9, 2016

National Family Caregivers Month

By Alyse Brunella

When a loved one becomes ill, it’s part of our instincts to give up our entire world for them, but don’t forget that YOU matter, too! November is National Family Caregivers Month, and it’s important to know that caregiver stress is very real and can impact your emotional and mental state. Fortunately, there are many ways you can manage your stress, one of which is getting connected with your community. Mayo Clinic Connect has launched a new caregivers group, made specifically to help you share experiences with people just like yourself.

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Tags: Mental Health, Uncategorized

My son has genetic disorder diagnosed at mayo clinic 22 years ago. I can’t begin to explain how much this genetc defect impacted our family. Its like I stopped living a normal life.

Dear caregivers:
Yes, one’s life does stop when the loved one becomes ill. There are not enough hours in the day plus the sheer time alone spent away from all
the activities that one could be enjoying, like travel. Having said all that, I have found little ways to overcome the alone time even though the other
one might be in the same room. First of all, I have a little job at home and also an even smaller office that takes me about one hour away from the
house, I am only about three miles away and only can be gone maybe 45 mins to an hour, but that is enough time to do my responsibilities for the
job and also gives me an outside person at the post office to see someone else. Then I also have a small exercise routine away from the loved
one that I will not give up. It is only about a half hour in the evening, but there again, it is time for me and also away from the T.V. which is very
loud, so probably will lose my hearing. Already have ringing at night. There are other options with getting some help once or twice a week to do
the necessary shopping and etc, and that helps with the mental thing also. If you have the resources, there are people that can be hired for several
days at a time to do short trips. It took about ten years to reach the new normal which changes quite often and oh boy do you have to be flexible
and very patient. It really is a saint’s job, which I am not, because sometimes I am just not good at this care giving and get down on the weekends
when we are totally alone and we are away from our families also, so there is not a built in support system for us. There is one thing that we can
still do and that is make a trip to see my relatives for the holidays, since he can ride in the car for short trips, but does not want to go anywhere
otherwise. It has been ten years of doing all of the business and making all the decisions for the household so am almost prepared for whatever
comes our way in future. Anyway, find something you like to do even though it is very small but takes you away from the situation you are faced
with on a day to day basis. Just my two cents and that is about all it is worth. Sure feel better having written this also, so this is an outlet for a
caregiver also. Take care and remember YOU, ozys

@ozys

Dear caregivers:
Yes, one’s life does stop when the loved one becomes ill. There are not enough hours in the day plus the sheer time alone spent away from all
the activities that one could be enjoying, like travel. Having said all that, I have found little ways to overcome the alone time even though the other
one might be in the same room. First of all, I have a little job at home and also an even smaller office that takes me about one hour away from the
house, I am only about three miles away and only can be gone maybe 45 mins to an hour, but that is enough time to do my responsibilities for the
job and also gives me an outside person at the post office to see someone else. Then I also have a small exercise routine away from the loved
one that I will not give up. It is only about a half hour in the evening, but there again, it is time for me and also away from the T.V. which is very
loud, so probably will lose my hearing. Already have ringing at night. There are other options with getting some help once or twice a week to do
the necessary shopping and etc, and that helps with the mental thing also. If you have the resources, there are people that can be hired for several
days at a time to do short trips. It took about ten years to reach the new normal which changes quite often and oh boy do you have to be flexible
and very patient. It really is a saint’s job, which I am not, because sometimes I am just not good at this care giving and get down on the weekends
when we are totally alone and we are away from our families also, so there is not a built in support system for us. There is one thing that we can
still do and that is make a trip to see my relatives for the holidays, since he can ride in the car for short trips, but does not want to go anywhere
otherwise. It has been ten years of doing all of the business and making all the decisions for the household so am almost prepared for whatever
comes our way in future. Anyway, find something you like to do even though it is very small but takes you away from the situation you are faced
with on a day to day basis. Just my two cents and that is about all it is worth. Sure feel better having written this also, so this is an outlet for a
caregiver also. Take care and remember YOU, ozys

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You sound like a saint to me. For me the most stessful thing was the constant running away. What do you do with cognitively impaired child that is super hyper and has no sense of boundaries. We gave up on family vacations. At restaurants one of us would eat while other parent walked around with child. Son is adult now and has calmed down a lot. But still needs 24 hour supervision. 24-7-365. People who have never lived this life just cannot imagine the desperation that parents feel. There is so much pressure from neighbors, school, extended family, social workers. Everybody has an opinion but they can just walk away and drive away in their car after latest lecture or intervention on your family. Behavior modification. Set appropriate boundaries. Maybe it works for some kids. But it does not work for severe mental retardation. Now my life is different because adult child doesn’t live with us. I an empty nester. Now I have chronic conditions and I think the 20+ years of non stop stress took toll. Now I am hiking outside and trying to do healthy living. But I know the private hell and dark thoughts that caregivers have. But not allowed to express them to anyone because bad things would happen from system. So just keep going and tell everybody what they want to hear so they can write their nice reports. That is my experience. Not sure if there is any meaning to any of it. I guess one good thing is it appears mayo clinic plans to follow my son for life. So I don’t have to worry about that. They like rare conditions for research. We filled out all the reseach permission forms when child was three years old.

@ihatediabetes

Thank you for your very real and honest post. There are very real comparisons, in your post, to living with and caring for a loved one with dementia.
Macbeth

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