One of the biggest challenges I face as a caregiver ,and my son faces as a person with severe spastic cerebral palsy ( he is 25) is finding meaningful ways to connect to our broader community. I have no extended family here,my husband tends to be reclusive, and my teen ,like so many teens wants to keep her peer set a thing apart ,(which works for me too ) I have two adult offspring who have moved out of state ,both are in graduate school and while we have good contact via email they ,like my teen are doing exactly what I want them to do which is building their own lives.I have in fact made a deliberate effort not to depend on them for social or emotional support because they have chosen career paths that they both love and that are extremely challenging.It has meant a lot to give them the freedom I can not give my son who remains at home.If there were better options for him like good day programming he would attend.
When my son was in school he was connected with the community through his school and back then like many people I had a social life that grew from my work life. Its been about four years since my son Joe aged out of the system.I take him to town for walk abouts and he goes to church with his father and he goes to the library once or twice a week but that is about the extent of his social life .His condition disallows supported employment So what does he do? .He follows the soaps and derives some sense of community from them ,which may sound weird but is true.They are helpful to people who are mostly home bound and are interested in them.Meanwhile I blog on xanga .His soaps and books on tape ,and my blogging and the books I read help some but both of us miss actually seeing people we are not related to.I love to talk politics,and bounce ideas around and I miss the opportunity to have conversations with people.
I am unchurched and have no inclination to join a church although I know fellowship is one way a lot of people develop supportive relationships.
The isolation used to bother me more then it does now.In fact I find myself less and less inclined to seek opportunities to socialize.Part of it is ,as I am sure many care givers can relate to , is a matter of being often too busy ,and being left too exhausted to do anything extra ,and the hassle of getting out is formidable..I still wonder though if my current apathy about this which stands in contrast to the way I used to be is a good thing because I am less bothered ,or if it means I need to actually make more of an effort to reconnect.I have gotten tired of people who can not relate to my circumstances and say things like " lets do lunch" and those who feel I am freakish to take care of my son instead of giving him over to the state .In short its not just about access to people but finding people that understand me and my life, or will take the time to really know my son instead of just exuding pity.he hates that.
So my questions are.
Is social isolation an issue for you?
Outside of fellowship ,and extended family which are not options for me ,have you found other social outlets that work around your circumstances ?

Thanks to any who have insights to share Mia

AKA as Donnatestard (which means stubborn woman

Well I suppose I can get even better at keeping myself company,and I can be thankful that my son has the ability to live vicariously. I find the lack of any response to my query ( to date ) instructive in and of itself. It reinforces my thinking that I am going to have to continue to rely pretty much on my own creativity , insight .and sense of humor to deal with a world that while much smaller then I would like it to be is still my world . I will make it work for me ,and if I turn up a blind alley every now and then ,I still have the capacity to retrace my steps , evaluate my efforts ,and decide to keep on keeping on.

Oh Mia! Don't give up on Neurotalk!! It is always slow here on the weekend! It will pick up! I know how you feel..I have posted before and got slow responses...sometimes no responses! I do know though that the weekends are very slow........hang in there Sweetie...you will hear from more people as they get back !Hugs while you are waiting!

Dorrie ,I am a stubborn woman ,pigheaded even and as such I would not give up on a forum I have chosen to read ,and after reading decided to participate in.In regard to this thread however I think I might have thought it through a bit more before I posted it. In all fairness to any care givers who might read here each person has to tackle this issue of meeting the need for socialization within the context of their unique circumstances .It really is up to me to tackle this issue for myself because only I know first hand what resources I might bring to it.It might well be slow on the weekends ,but I also think that my fellow travelers may not comment when in fact they do not think that there is much they can offer and in this case they would be correct.I bet money many feel the same frustration I do ,and how that helps me ,or them is beyond me. I doubt misery loves company.I did have one insight that I can share though since I first posted and that is that for me the companionship of my animals has been a major source of comfort.Thanks for caring and no worries.. its all good

Animals really are wonderful aren't they! We do not have any right now but I have had my fair share of them in the past! On another note we do have a Gal named Barbara...she goes by Befuddled who posts in the caregivers support. Barbara has just recently lost a dear friend of hers when she was caring for. I am sure you will read her posts as you look around the forums. Right now she is having a really hard time trying to deal with the changes she is going thru since her friends passing. Barbara would be a great person for you to chat with. I am thinking of you and praying for you, Donnatestarda!!!Just a PS..........Please say hello to Joe for me.....please tell him I hope he has a good day today!

Hi Donnatestarda

I am not sure I got that correct. I'm bad with long names.

But I have been around, but not in here for a while. I've had a rough
week. My oldest son was in the hospital over the last week. Then
I was gone for a few days. And just returned. Just posted a couple
of hello's was all I got in.

I'm Donna and I am a caregiver and a mom. But its life that makes
me move some. I love to go, but I have been home a lot again lately.
I still have health issues of my own.

I don't know what state you live in, but I"m sorry to hear that your
area doesn't have good programs for your son.

I'm a worker for the Indiana Resource Center for special needs families
and its hard to find the right kind of organizations to help in many cases.

Donna

{{{{{Donna}}}}}

I took care of my dear friend/neighbor all summer and he was almost all I knew for the most part until he passed last month. I came from an abusive marriage that left me almost totally isolated except for my friend Doug who passed. I was new to the apartment complex and when Doug was able to he looked after me at 1st. We fell in love but my love was not willing to marry him when he asked me Labor Day weekend. May I suggest to you that somehow you try to build some activities for yourself just a little at a time to get out. I signed up for a class, started a volunteer job for hospice once a month, and started an online class all the last month of Doug's life.

I know that I felt many emotions caring for Doug. It is something very hard to do to be a caregiver. Also, a home health care nurse would give you some relief. Doug got one the last 2 weeks of his life.

befuddled2/barbara

Mia,

I forgot to mention that I can relate to you. Like people told me though is that I would be in better shape for Doug if I took time for myself. Even an online class that doesn't require a lot of time like I took at HP or an hour a month like I did for the hospice would be something.

befuddled2

Thank you Dorrie ,Donna and befuddled2,I know what needs to happen ,that I need some respite ,and that Joseph and I both need to make our world's bigger,and I know how self esteem and motivation are at risk for both of us if things continue on as they are..to feel chronically stressed and confined can never be a good thing.The difficulty is making it happen.You know how out of sight out of mind works? Thats basically a major player here ,and we have the misfortune of living in a state ,Alabama , whose waiver programs are eigther poorly designed ,or when they work are crisis driven. In other words people move up on waiting lists for such things as day habilitation or recreational services based on a formula that boils down to can the family cope if we don't step in? It comes down to telling a fib which lots of folks do , or actually waiting until a crisis presents that meets their criteria.My autoimmune disorder which affects my motor and sensory nerves as well as sometimes causes a serum negative inflammatory arthrtis to flair is not something that has caused an acute crisis but it has the potential to do that ,and stress makes it worse ,so I might see if they would consider that but then I think of people who must have surgery ,or who are clearly overwhelmed and I have a hard time thinking of asking anyone in a more difficult situation to wait ,or asking them to choose. There is a class action lawsuit here challanging the waiting list but even if it succeeds there is also a lack of appropriate programming.One thing I have done is deliberately tried to reduce stress by making note of stressors that I can do something about ,and I love to read ,and listen to music ,and were I not so busy to paint and draw...anyway I don't want to passively accept the way things atre but I am worn and frazzled and have a hard time coming up with the energy to be a good advocate for my son or myself.It does comfort me to know though that it is not a lack in myself but rather the size of the challenge that has eroded my sense of empowerment and just being able to hear that someone else gets it helps.

Oh Mia...PAINT....DRAW....sounds like you like and want to and I know that it can be hard to make the time but if you can even afford a few minutes then I think you should go for it. I actually went to an art therapist to help me with my anxiety and depression/panic attacks. It was an amazing experience. Of course I was a little resistant at first....she wanted me to paint or draw my feelings!!! I found that very difficult...but I tried. 1/2 the sessions were talking then painting. It was amazing...So paint or draw your feelings!!!! then come on here to talk about it! It is worth a try! Hugs for you Mia