Forum for spouses & family

[briarrose]

I read Calypso's post and felt horrible for her. What can we do for her and her situation? There are many great, supportive spouses out there. Maybe if they had their own forum, seperate from ours they could get proper support. They too go through all the emotions of a chronic illness. They have questions and need support like we do.

Maybe some of the supportive spouses would be willing to lead, in a sense, the way. They will find that they have the same kinds of concerns and fears. It will give them a chance to find common ground and ways to communicate, especially if they refuse counseling.

OK, I know it's a wild thought but I'm half asleep too.

steph

[Nicole's Mom]

Steph,

I don't think it's a wild thought at all. As a mother, caregiver I think it's a great idea. I was already kind of wishing for such such a forum. Just don't know how to set such a thing up or if I would have the energy right now to be a moderator or administrator of such a thing or the time since so much of my energy and time is being directed at caring for Nicole. And then I "collapse" when I have a break because I have some of my own health issues unrelated to dyautonomia. Yet just this morning my husband and I were saying that we don't know anyone who is going what we are going through. It would help to talk to others.

Thanks for bringing this up.

Bev

[DancingLight]

steph,

i am VERY interested in this for my mom. i have actually tried to get it going on ndrf and also locally, have tried to find a psychologist who would lead a group for parents of ADULT chronically ill children. no such luck. the only support groups available for caregivers--spouses or parents--seem to be for parents of very young children OR for children of elderly parents. neither of these was helpful to my mom.

my mom longs for the support that i get here on this forum. and i long for her to have the gift of support that i get here. it is amazing. and it keeps me going. i wish that was available for parents and spouses. she has such caregiver burnout...i think it would help so much to talk to others.

beverly....you and my mom are in similar situations b/c nicole and i are the same age and you are our primary caregivers...i think it would be great to start a separate group for parents and caregivers.

steph...your idea is not way out there! in fact, i have been tossing the idea around for a long time...trying to figure out how to make it part of potsplace and as michelle. but i was stuck on the whole privacy issue. if there is a caregivers forum separate....we would need to respect that forum as pots folks and not nose in it! let our caregivers have that space all to themselves so that they feel comfortable saying what they really need to say!

let me know steph...i don't want to step on any toes here, but i would love to help get this going and email/organize whatever would be necessary...i have been wanting this for my mom for 6 years now! we are all so incredibly fortunate to have eachother....our caregivers deserve the same!

do you think spouses would have similar issues as mom's of older kids? just wondering. idon't think there are enough folks to start 2 groups. the benefit though of starting ANYTHING is that hopefully people will find folks that they "connect" with and can always branch off and email separately. our caregivers feel the same isolation we do.

okay, well, another hot button issue for me that i am very passionate about!

thanks for bringing it up...i was dragging my butt on it a bit (i turn things over in my head too long!) need to just get the ideas out there!

emily

[ethansmom]

I think this is a fantastic idea! And having the really caring, supportive caregivers lead the forum would be wonderful...that way, those who are seeking support can have seasoned folks to talk to from the get-go. My only question would be....how to even get some of the more stubborn ones to even log on and check it out?

[DancingLight]

hey jess...are you thinking david is stubborn???

i told my mom about the idea and she was really excited!

yeah!

emily

[Star382000]

This is definatly a really wonderful idea that I know would help many people and our loved ones lots. And like Ghandi said *is referencing Jessica's signaure* "You must be the change you wish to see in the world" even if it's just change for the world of some people, it's wonderful. *hopes that made sense*

[Nicole's Mom]

Emily,

I think you brought up a great point about privacy.

I had recently checked into the NDRF site and found the caregivers discussion group only to realize that it had petered out. Maybe that is because it becomes a delicate situation for one to speak right out the "open" about someone they love and how their illness affects them (the caregiver).

I looked for the exact thing you tried to find for your Mother- support for caregivers of an adult child. But like you I ran into limitations. I could only groups about caregiving for elderly parents- lots of those groups. It's even hard to find a book about this.

Anyways- as a caregiving parent- I thank those you who are giving this so much thought.

Beverly

[briarrose]

Thank you for all of the positive responses. Wasn't really sure what I was thinking during the middle of the night, just horrible for Calypso.

Maybe I should have emailed Michelle or Nina first and asked if we could add a seperate forum for family to talk about their issues, again not thinking clearly this morning.

I know we help each other on this great forum and our spouses/family members suffer too so they really need a support group. They will probably find a lot of common ground and relief for natural feelings, great counseling!

Star382000 your quote makes perfect sense.

[briarrose]

Sorry guys am having a lot of problems with my computer this week so I didn't realize I posted twice. In fact, I haven't responded to some topics because of my computer problems. It took me an hour to do this one.

[ethansmom]

YES he is very stubborn! I know some others have mentioned the same thing in the past, and I just wish there was a way to get the stubborn ones to participate.

I also wanted to say, that I think those of you who are active, involved caregivers are just amazing. You have no idea what it means to your loved ones to give them so much...they don't have to go at it alone, and that means everything. We are ever-grateful for those that have hepled us along our tough, tough road.

[BuddyLeesWife]

You guys are my support group! Fortunately my husband's symptoms from NCS are mostly under control and he is able to work and participate in most activities; however, we have made changes in our lifestyle and we have aggressively pursued treatment mostly because of what I have learned from this site. Most of my encouragement comes from the open, intelligent, sensitive, witty and helpful information provided by this group.

I do think privacy is a huge issue for the caregiver support forum. Since this is not my illness, I try and limit my input to what I believe my husband would offer himself; he knows I participate in this forum and trusts my judgement but it is still an issue of judgement. My true concern is for his twin brother whose symptoms are not controlled, but I am further removed from his situation and he has not expressed an interest in participation in the forum. The other difficulty I see is the guilt angle. I know I have mentioned before that I feel guilty whenever I complain of how this has affected my life because he is the one really struggling and working through it. That is what this forum helps me understand.

As I said, we are fortunate.

[MightyMouse]

Hi all, NDRF has a forum for family and loved ones...NDRF is a well established site similar to ours--however it's been around several years longer than DINET. Not sure why, but that section of their forum doesn't get much traffic.

Nina

[DancingLight]

nina,

i did sort of try to revive the ndrf one, but didn't get the interest. it seemed there might be more folks here that had loved ones interested...??? just wondering.

emily

[briarrose]

Hey Nina

Yeah I remember seeing that site but like Emily said, Dinet is very popular.

I think it might be great if spouses & family members could get advice & support from an active website that is being used by the same patient population.

steph

[Nicole's Mom]

Dancing Light,

I think that this is a great discussion and I've been thinking a lot about it and a I've been thinking a lot about you and your mother. You've tried to get your mother some help and I admire you greatly for that. And I know it would bring you much comfort and relief to know that she had a place to turn to for support and advice. It's certainly a very natural and loving response to her needs. Yet I think my main question is -I wonder how all your concerns for your mother impact you? What do you do with your worries about her?

Nicole, just like you have for your mother, has much compassion and empathy and concern for how her illness impacts me. I don't want Nicole to get all wrapped up in how I am doing because she has so much on her own plate- and I want her to put her energy in just trying to get through her difficult days in this relapse so that she can get better. Yet I know that she has concerns about me. We've talked about it - occasionally she brings it up. She is very perceptive and sees what's in my eyes and if I'm tired. I know how my caregiving helps her and I know how it impacts her.

If you don't mind me asking, what are your present difficulties and limitations? I studied your "signature" and it seems that you are able to be fairly active at home and that you love movies. Do you go out to the movies? I read over some of your posts but could not really get a feel for what your life is actually like dealing with dysautonomia. It seems that you have friends in your life which is great. Are you able to leave the house and go out with them?

I hope you don't mind me asking all these questions but I guess I've been thinking a lot about this subject and and about you and your mother and other caregivers as well and I am trying to put a picture together- maybe to see if any solutions comes to me. Also I'd like to know a little bit more about you since you are so close in age to Nicole.

Best Wishes,

Beverly

[DancingLight]

Beverly,

Wow! you are VERY perceptive...i suppose that is where nicole gets it from, huh?

i want you to know that i have read your post twice now and am really turning it over in my head. i will write after i have some more time to process. you really touched on a topic that i need to do a LOT more work on in terms of not letting myself feel responsible for my mom's happiness, etc., etc. i think i will discuss what you brought up in therapy this week! (i have struggled with this the whole time i have been sick! it's a hard one as you know!)

as for my level of functioning...i guess i must be a good actress huh? since you went back and read old posts and stuff and i sounded pretty good in terms of functioning...actually, i am VERY LOW functioning and mostly homebound. even at "good times" i am not able to drive, cook, go grocery shopping, do housework, etc. etc. i really just do the best i can to take care of myself, get through each day, get to appts. (one appt. is my project for the day), and take care of the dog. i fell awful ALL of the time. i am blessed with awesome friends, but most live far away. going out anywhere is killer for me. if we need to shop for something or try to go out to lunch it just really is hard. my friends are awesome when they come to town and visit and we talk on the phone. i try to keep my relationships as a HUGE priority no matter how badly i am feeling, which is why i spend time on the internet, phone or writing letters. i "schedule' phone calls with my friends or visits, and they completely wear me out for the day, or several days to follow (in the case of a visit). i haven't been able to meet new friends here so that is hard...but thankfully since i am a "townie" my friends still come "home" to see their parents and visit! i also have college friends who have come to stay...one who came a took over for a weekend and did all of the cooking, driving, etc. amazing! i have someone come once a week for a few hours and help do stuff that i want done around the house. eeek....i meant to just write that i wold write more later!

i am starving! here's an example...i am heating up dinner and getting it out, but mom has everything already cooked. so that is sort of where my functioning is.

as for my signature...those are all things that i love, but don't necessarily get to do them much! but, i still love them and do them when i can. i watch movies at home...tried the movie theater....not so good! so i wait for them to come out on video.

anyway, what i really wanted to say is that i am thankful for your kindness and intuitivness and caring and compassion. thank you so much for taking the time to reach out to me and bring up that topic. i also want to learn more about you and nicole. we seem to have some similar interests. so, i will continue this later! with more on things. i debated whether to post this or write to you privately...but i like it when folks post their stories...so hopefully people won't mind my rambling!

thanks again.

emily

[Star382000]

I am much younger than you, Emily (and you too Beverly ) but I just wanted to add my own thank-yous as I tend to worry more about my mom and how everything with me and my health affects her. Definatly something I want to bring up with my LCPC, thank you

Ooh and another thing, with what you said about rambling, I just have to stick in this quote from someone I know, it's really true

some times the rambeling of a mind is a look in to the soul of that mind.

[Ernie]

Hi Emily,

I don't think you are rambling at all. I find it very interesting that you share your personal experience. I think it makes each one of us closer together.

Ernie

[MightyMouse]

Here is the link to the NDRF caregiver's forum. No one has posted there in a while.

http://216.149.163.247/cgi-bin/forumdispla...e=20&LastLogin=

Also, they have a separate forum for parents too..but like our forum, the main board, or general forum, gets the most traffic.

Nina

[Nicole's Mom]

Emily,

I am so glad that you responded to my concern and inquiry and I would love for you to continue where you left off- and tell me more about yourself. I also debated for a while whether or not to privately e-mail my questions to you but like you I think that others can benefit from a discussion like this. And no you were not at all rambly.

It certainly sounds like you do have a lot in common with Nicole. I'd like to know how long you've been sick and if you ever have periods of better "wellness" and what kind of doc you see and much more. I think it is so wonderful that you are wise enough to know the power of keeping your friendships alive. As I've said in a previous post Nicole has to reach out sometimes to make "it" happen with her friends. Some contact her on their own and come over but sometimes/ sometimes often she has to do the work to make it happen. But she does it.

Last night she called the mother of a good friend who moved away a few months ago. The mother is @ 60 and got MS when she was 25. She (the mother) has known and loved Nicole for many years. Nicole has never called her before but received "word" from her intuition to call this woman. It was one of the best things she has done for herself. This friend's mother who has been wheelchair bound for years offered wisdom and encouragement.

The best thing she said is that Nicole has an illness but Nicole should not become the illness. That really struck Nicole in a deep way- it was excellent advice- wisdom, Nicole said.

And Star382000 I am glad that you joined in as well. Moms worry but it's not good for our loved ones (like you for instance) to take on the burden. It's not your "job" to worry about your mom even though that's a tall order for someone who is compassionate. As I said Nicole works on this too- to not feel guilt or to not take on the burden that she has to protect me. It's not easy for her but she works on it. If you are sick your energy has to go into finding ways to deal with what is going in your body while trying to find whatever answers might be out there for a better life.

It's late now and I will rest for the night. I'll check in tomorrow afternoon after I see Nicole.

Take care,

Beverly

[morgan617]

i tend to think this site is a little more sensitive and caring, and it has great moderators. gees sorry, spelling ability has gone south... frankly i don't care what the hubby says about me, i'd just like him to be able to talk to someone who understands how it feels. i know how it feels to be sick, but not how it feels to live with me. i think some of the problem is, guys just don't share like gals do. and although there are plenty of guys that have problems, it's their wives that would share. so it's a man thing. sorry, but in truth the majority of us are women and men are taught not to voice their feelings. that's probably where david's stubborness comes in. i'm not sure my husband would share with others because he feels he has to just buck up and deal with it. he takes very good care of me , but i'm sure he gets as miserable as me, but wouldn't have the same desire that i do to vent. am i making any sense? if not ignore this post. i do think it's a great idea tho. he came on today because he couldn't believe the out pouring of caring for HIM. so he said, man this really is a great site deb. i said, duh david.. lol. but for those of you who read his post, please notice how much he down played his role in his support of me. and he is a tower of support. so that's where i think the problem is. just my two cents with no way to fix it... morgan

[briarrose]

I agree with Morgan about this website and it's moderator's.

Some guys don't like to share their feelings but I have met many that do. I think if they saw a couple of the guys talking, then they would probably see that their not alone and maybe open up. After all, many of the women that have started posting here said that they read for many months before chimming in.

Some times it just takes commonality.

There was this broadway show I went to a few years ago it was called "Defending the Caveman" You should have seen the way that men and women reacted, it was truly hilarious and an insight to both sides.

[briarrose]

Caveman website - http://www.cavemania.com/

[Herdswoman]

Yep. This site is way too soft and fuzzy for most guys. Shoot, half the time it's way too soft and fuzzy for me. Mighty Mouse is always editing my posts and telling me to clean up my language, lol. And I don't confront 99% of the stuff I would like to simply because the 'net is a "flat" forum for communication. Very hard to tell what is really going on, so I prefer to give the benefit of the doubt.

AT ANY RATE......

In the interest of our men I hereby offer our race shop, located at our home, on the first Friday night of the month. Men can be men, turn wrenches, get dirty, cuss, cut steel with fire, grunt, scratch, and ***** about their wives for awhile. Eventually I'll go out with a round of barley soda, help separate the pepper from the ****** and release my inner ironworker.

No need to thank me. Hey, it's what I do.

Besides, my husband is well grounded in manliness, science, sex and being the right partner for a POTSy, asthmatic, autoimmune-funky wife. Just don't frick up his tools or tell him that our GTO "looks just like the General Lee" or ask if we run a big block in our drag car.

Tom's anal about his tools.

The General Lee was a Dodge Charger.

There is no such thing as a big block Pontiac.

Edited November 6, 2004 by MightyMouse