Sirry for your stroke and heartbreak, but I can relate as my stroke was in 1985 at age 39 :Tantrum: and since them, I see family and few loyal friends, but feel "some" people are afraid of disabled people, maybe afraid they'll be asked to do something for them -

Keep smiling and visit your friends as they'll come around in time

June

Sue,

Isolation is one of the biggest and hardest parts of dealing with someone with dementia. Having dealt with it myself for five years with my dad and nine years with Don's mother, I understand how you must feel. Unless you've 'been there, done that' people have no ideal what's it's like to be a caregiver for someone entering that stage of life.

Even the word 'dementia' scares many people off from wanting to include a person with it their party plans. (It does change the dynamtics of a group, so intelligectually I understand this but it still hurts your heart.) I remember when Don's mother was first having some problems in this area and other members in the family excluded her from being invited to a big family reunion. Don was incensed that the oldest person in the family was not welcome at a family reunion. I'm still shaking my head on that one.

Set a time limit on your sulking, Sue, and when it's over climb out of your cave. You can't change other people's attitudes. You can only change your own. One day when Ray is gone you'll look back on these years and realize how strong you've been and how you've done the best job you could and you'll be proud of what you accomplished.

Jean :friends:

Sue,

I have a lot of those days also where nobody calls or comes by and I feel totally isolated by the world. Maybe that's why I'm so determined to get Gary out and do things and go places, no matter how difficult it is. I refuse to let the world forget about us ----I'm just a stubborn ass when it comes to that sort of thing. How other people choose to treat us is their problem, not ours. I refuse to give in to ignorance and intolerance.

Sarah

You are going thru alot, but you should know people with dementia aren't acting right - Its also hard for those around them to want to include them but, don't give up

June

Oh Sue, I'm so sorry for the "hurts". The way I see it, those "friends" were really only acquaintances after all. It's said that if you can count your friends on the fingers of one hand, you're lucky. I truly believe that. My sister and I are not eye to eye on that one (well, other things too - we're complete opposites - same mother and father too) She calls people friends- everyone she knows- and I call them acquaintances.

Another thing. My mother used a foreign saying which translated is - "what you laugh at comes before your eyes", or simply "happens to you". It's true too. As a funny instance, my sister has always had multiple little sneezes rather than one hard one. And of course being taught to always say "God Bless You" with a person like that, you do it once or twice and then more or less laugh or say something funny. Lately, my dog has been sneezing this way (can't find a reason) and of course my sister reminded me that I always said something to her and now............So, to the point. People who hurt people (although they may not think of it that way) get it back. What goes around, comes around. Not nice to say- but they get theirs.

I'm sure you nor Ray have never been this way to others and I'm sure that you've even gone out of your way to help people, who for whatever reason, weren't as fortunate as yourselves. It's easy for me to say, but let it roll off your back, and, continue being who YOU are.

Many years ago, I had a gift shop. So often people would come in with children that would make me want to pull my hair out. A woman with an emtremely well-mannered son who was hydrocephalic used to come in to buy cards. I always tried to be especially nice to the boy and one day the mother mention how nice that was; it made me feel so good. I think of the boy and mother often but will never see them again and who knows what happened, but the warm feeling is always there.

Hey, you know you have friends here and a few good ones there (in person) so the heck with the odd acquaintances

Phyllis :hug:

FRIENDS -

Its hard to count the really good ones, but one should count their number of QUALITY FRIENDS & NOT jusy how many they have

I have a friend of 55+ years, she is what I call a quality friend - always there

June

Sue, what can I say what the others havn't...nothing..but my thoughts are with you...when Trev had his stroke, yes it's the true friends who stay with through thick & thin.

Like the people at my church who helped me move house without being asked (all OAP's by the way). Yet another "friend" who actually was our "best woman", has only been in touch a couple of times........

Yet in the village I live in so many people have been thoughtful, asking after Trev & being pleased with his progress.

You can always "rant" to us on here anyway.

chrisxx

Sue,

I am truely sorry your past few days have not been good. I hope you know how much I cherish the friendship we have developed. I know it is unlikely you will ever pop in for a cuppa, but know the invite is always standing.

There is no time like the present to think about the "have-to's" vs. the "I shoulds". You have enough "have-to's" right now. Start replacing the "I shoulds" with the "I want to". Now I know that doing all the "I wants" isn't possible, and lets be real, only the wealthy have that option. But... if you get rid of some of those "shoulds" like weeding the garden for instance, you will have a bit more time to squeeze in a few "wants".

I wish I could take you in a china shop with a baseball bat and let you go to town. It is very liberating. Exspensive, but liberating. If you need to scream, DO IT!!!! Beat your bed to death with a broom. Just make sure no one's in it at the time.

Talk to ya soon,

Kristen

My Dear Aussie Twin,

Don't we wish life could be just the way we want it directed? You know how we share so many of the same challenges with our husbands, so you know how I care.

One of the most challenging situations for me is that I've always been the party giver - love to entertain, love to have folks around....maybe I should make that "loved" - now it's just too much work. I can't do it all, I'm no longer Super Woman. It still gets lonely, still hurts though when our desire for socializing isn't being met the way we want and need. I guess it's a little bit of denial about our situation.

I think of all the challenges the dementia is the most challenging. And for me, it is the most frightening because the man I know is slipping away. Yes - we are still sorting life out.

Lord bless you, my friend.

Ann

Sue, I know exactly how you feel, I think we become more vulnerable after someone we love has had a stroke as I was the same after Baz had his stroke I expected that all the people Baz & I had helped before he had his stroke would be there for us & I am still waiting...

People just don't think, I can't imagine someone asking for help with a barbecue & not even asking you it goes against everything that is sensitive & kind that you think people have but they don't. I am constantly being hurt by people who you think should know better.

Friends who let you down don't deserve to have you as a friend. Thank goodness for this Stroke site it has been the best thing in the world for me since Baz had the stroke..

Keep Believing ,Anne.

JFK was quoted as saying - "KEEP YOUR FRIENDS CLOSE, BUT YOUR ENEMIES CLOSER!!!!!"

jUNE

Hi Sue,

I think you speak for a lot of us when you describe your feelings at times like this--for stroke survivors and caregivers both. On the other hand, if I were your neighbour who didn't know how to arrange a barbeque and was feeling stressed and inadequate, I'd invite as few people as possible and it wouldn't be because I didn't like them! What's she doing having a barbie in the middle of winter anyway??

But like all your other friends here, I'm sorry you were hurt and felt let down. It is only physical distance that stops this crew here crowding in to your house and demanding a hamburger while they raise a glass to you, so don't fell too alone! Be happy that we're not dragging mud into your house . . ..

Hang in :beer:

Trina