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Don't want to be around other people
Posted: Sunday, August 25, 2019 5:58 PM
Joined: 11/19/2015
Posts: 1004

No not my husband but me -- it is just so hard for me to go to group functions anymore.  I don't really know why except that I know I will have lots of questions about hubby.  I've found that most of the time people don't really want to know the frustrating details of our daily existence and are just asking to be polite.   I just want to shake them and ask why don't they stop by and see us or call or make an effort to support us in this trial.  I know I sound like a whinny baby and I sure hope I get over these feelings someday but for now I just want to not be around lots of  people other than close family.
Posted: Sunday, August 25, 2019 6:18 PM
Joined: 4/2/2018
Posts: 2266

I know it's not easy to be around people when they ask how he's doing, even though they are trying to be kind. The reason it's so hard is because they have no idea what it's like. That's why this board is so helpful. Hang in there.
Posted: Sunday, August 25, 2019 6:25 PM
Joined: 6/27/2019
Posts: 20

God bless them, they ask how you're doing as a matter of form, and would prefer you not answer honestly. On the other hand, there are a few people I know who have Been There, and I don't hesitate to tell them exactly how we're doing.
Posted: Sunday, August 25, 2019 7:12 PM
Joined: 5/8/2018
Posts: 50

Hi annie789, I totally understand. After DH was diagnosed we shared it with several very close friends. Only one couple has come along side us and helped us.  We’ve never had to ask them for help they just seem to know.  It sure would be nice to have someone call and say put the coffee on I baked a cake. Lol
Posted: Monday, August 26, 2019 9:28 AM
Joined: 3/1/2013
Posts: 34

Good morning Annie.  
I struggled with the same feelings for quite a while until I realized that I was isolating myself from those who could help me come to grips with the loneliness we can't help but feel. 
I'd go to a Meetup group (look it up) or some other event and feel all alone even to the point of getting up and leaving.  
Yes, I was asked the same questions and I simply answered them by saying "She's doing the best she can."    

Once I got over the feeling of being so alone, even in a crowd, I realized that I needed to be around normal active people because I had built myself a jail cell from which there was no escape. 
Don't give up on yourself.   

Posted: Monday, August 26, 2019 10:01 AM
Joined: 8/10/2016
Posts: 1957

Hi Annie,  Sorry you are feeling lonely.  Know that is tough because I have felt that way before.  I deal with a mother not a spouse.  Lived with her 15 years and pretty much isolated myself to protect myself and make it from day to day. Spent a lot of my time sitting in a parking lot in my car.  When I see people doing that now I wonder what they are running from.'

They use to say on here quite a bit, when you’ve  seen one dementia patient, you’ve seen one dementia patient.  Other words they are all different.  My experience is I hate when people visit, call, talk to my mom.  Exacerbates aggressiveness and behaviors that are troublesome for me.  She can really offend people.  She has no boundaries, treats unfamiliar as familiar etc.. You never know what others have experienced which may make them uncomfortable.

If you have had a close friend or sibling  in the past maybe you could set up something where your husband stays at home (caregiver if he cannot be alone) and you and her do something.  Do it on a regular basis so it’s something you look forward to. Keep conversation about husband to minimal.  Ask her a lot about her life.  My sisters were very good about doing this with me.  I learned quickly they did not want the whole conversation to be about that.  That made me feel more isolated in a way but it still helped me a lot to survive.  You need to talk believe me I get it.  The forum here is my venting place.  Found a place on here where sometimes I say I have to talk.  Also have an uncle from my dads side that I can talk to.  Think one of the hardest parts, at least for me, is I’m looking for answers but in reality seems none exist.  There is no book to read.   I feel sorry for her, yet very hard to be around as it makes me so nervous.

Just a thought. Hope maybe it helps.

Take care

Posted: Monday, August 26, 2019 4:41 PM
Joined: 11/19/2015
Posts: 1004

Thanks so much for your words of wisdom Bruce, Sayra, Mimi, Ed, tcrosse.  It does help.  I do get out because I have a caregiver coming in 3 afternoons a week but I sure don't like to be in a crowd and would rather just meet up with a friend.  I have passed up 3 family weddings this summer and hoping I can make myself go to the next one.  This forum is a lifesaver even if I don't post much and just read.