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I take care of my mom 20 hrs a week. I've let my situation cloud my identity and fear talking to people because of the dreaded question 'what have you been up to? What's new? I'd rather be alone than to not feel anyone gets me and i don't feel connected.

I'm going to join a support group at a nearby church so that should help. Does anyone else struggle with this?

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Yes Smitty, all of those go hand in hand when you feel isolated from the outside world. It doesn't just happen to those who are caring for an elderly loved one, it can happen also when you are raising a family. You have an advantage in that you are care giving 20 hours a week, as compared to another who is doing that job 24/7. Whew! We start to feel like we don't have anything to offer outside of dementia, changing adult diapers or repeated questions. When someone asks how we are, if you're like me the first thing that pops into my head is the care giving. Try to get your mind to go to other things in your life....perhaps you have a green thumb, or just redecorated a room, or changed the oil in the car.....anything that will take you away from the "I'm so tired of changing diapers, wiping poop, cleaning food spills"......those who have never done elderly care giving don't have a clue. You are still a special person outside of the care giving, and sometimes it's hard to not let that person go because of mental and physical exhaustion. A support group is an excellent plan and will allow you to meet others who are feeling isolated and at the same time doing some socializing and meeting new friends. Good luck!
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I like what Jam said about finding something else positive to say. And if you haven't had time for anything else, understandably, you can either say, I just found a wonderful on-line support group :-) and one at a church, and then talk about that, or just say "I'm fine, thanks" and turn it around on them. Being a good listener is always appreciated :-)
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I hope the support works for you. I have become complacent and just want to stay home and take care of mom. This isnafter 8 years of her living in my home. I used to feel the loss of the social life. But, my husband deserves a social live so we do try to get out every now and then.
How long have you been doing this. I believe we caregivers go through stages of loneliness, depression and fatigue....also added health problems from the stress.
Good for you joint a church group. Keep us posted on how it works for you.
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I'm not (yet) as involved with my mom's care, but it still leaves me worn out emotionally and feeling unattractive (not necessarily physically, but as someone to be around).
OTOH, like supermodel slimness, society promotes social behavior but there's nothing wrong with being an introvert. The support group is an excellent idea. I hope you find your true self and the strength to be that person :-)
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Hi Smitty, Yes, I do believe that social anxiety and social isolation go hand in hand with the stress of CG burnout. My Mom is now in hospice because we could not handle the constant pain that she was in and even the morphine that she was on. But I have cared for both my parents going on two years and Dad just past away 4 months ago. But I do understand your situation. I didn't want to see anybody, talk to anybody, have anybody at the house, even going out to do the grocery or other household upkeeping became such a chore. All I wanted to be was left alone in the house and not speak to anyone. This is stress burnout to the max. Joining your church is to me the most wonderful idea. I used to go to my church regularly [I am a Christian] until Mom needed me 24/7 and I've made friends there who stand by my side anytime I need them. But even though now Mom is in hospice, the feelings of isolation, anxiety, hurt and pain do not just disappear, and they won't for a long time because caregiving was my whole life. Now what do I do, I ask myself? Actually the pain is still there and even worse because people go into hospice only for one reason.
I too hated to be asked "how are you doing." What do you say to a question like that? I'm stressed, totally fatigued,feeling lonely, having a terrible day, hurt and sad? People do not want to hear those things and even if you did answer those questions, you don't want to clarify what you meant, neither does the questioner want to hear your clarified answers either. Its not their fault, but what can they do to help you when you answer those questions truthfully? Until you connect with true friends from your church, then you are able to have a great sit down with one or two of them over coffee someplace or even your own home or their home, and then cry, explain, and ask to pray with them and they, through the Lord, can give you the emotional help that you need.
I hope this helps.....
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Social isolation and anxiety are all related to stress. This can occur from being a CG or any stress you could be going through. The stress depletes us emotionally and physically and that is why we don't want to make any more efforts or commitments (even fun ones that would be good for our spirit). Great choice for the support group. Put it on your calendar and commit to going no matter what. It will help relieve your stress and any guilt and you will be surrounding by others like yourself and gain some wonderful insights and share your experiences which are sure to help others. Don't stop going out or conversing with friends -- eventually they will stop calling and inviting you out. If that is already happening - reconnect; make a date if only for coffee. Be honest with your friend and tell them you don't mean to talk only about your CG parent situation but that you just need to download if they don't mind and then move on and make a point of asking them about what they are doing. They'll listen to you and eventually you'll get caught up in what they are doing and it will re-open up your world. Good luck. Baby steps but you've got to make the effort -- you'll be better CG if you take care of yourself (emotionally and physically).
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i can relate . I was recently only going over to the Nursing home every day to make sure that my father was getting quality care. I began to feel like I was not being fair to my mother whose needs were not being met with taking care fo the house and daily life things that go with her living independently at home. I noticed that she needed more help. I started going to the nursing home in the evenings and during the day devoting my time to fixing the problems at home. This has enabled us to divert our attention from the nursing home scene and to focus on real living. I also had a friend who offered to take me out on Sat . night and we went to the beach and ate dinner. I still find myself talking about my parent's situation. I am deeply concerned for their welfare and my welfare. What can people do for earning a living when caregiving is so time consuming? This does also give you an outlet.
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We can be consumed with our role as a caregiver. How can we be completely happy when we have the responsibility of another human being on an every day basis? We did that when raising our children. It's nice to have someone say, "how are YOU doing?" I'm finding that my friends also have stuff going on in their lives. It may be issues with children, grandchildren, elderly parents or health problems Nothing stays the same. I've had wonderful friends, did so many things, and always had something to look forward to. Some have passed on leaving me with the memories of those times. I recently went to a local senior center to join a new caregiver support group. At the first meeting it was me and another woman. The second meeting it was only me. The young woman running the group couldn't understand it since people did call and seemed interested. I'll give it another try and if it's the same look for another group. For me it's important to have a plan, something to do, something I like. Then when things get tough, I have that to think about and look forward. Think about this, if all of us on here lived near each other, we could meet and maybe, just maybe laugh a little. :-)
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I can relate to this, too. My now-90-year-old mother has lived with me for many years, and in the last 5 has developed some cognitive issues that make her pretty dependent on me for getting through her days, though physically she's doing well. I retired a couple years ago, so we're at home together most of the time. I have a small number of friends, and I see most of them every other month or so for dinner. I've always been introverted, and socially anxious, I guess. Every time dinner plans are made, I don't want to go. But every time I go, I'm glad I did. It's good to hear what's going on with my few friends and their families, and they seem genuinely interested in how things are going for me and my mom. And what's best is when we start to talk about what's happening in the world, about books, about stuff other than ourselves. It's just good to get out of my own head for a while. I only feel like I can leave my mom alone for a couple hours at a time for now, so these occasional dinners work ok. I think going to a support group is fine, if you're feeling burned out and think that would help. But I also think it's fine to like your own company and to enjoy being at home. Don't assume that people aren't interested in hearing about the reality your life, whatever it happens to be.
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It is difficult to maintain a social life or social connections when you are a principal or primary caregiver. It is important to get either family members to relieve you or paid home health aides so you can get some time to yourself. The problem is I always worried about what was going on when I was out with friends. I always phoned home to find out if everything was going well etc. Some people can turn the caregiving gene off better than others. But do get some time to yourself. Get sleep too as lack of sleep can really add to the sense of isolation.

Take care.

Elizabeth
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