i notice that there is family dynamics
topic but i was also wondering about
friends.

so i want to throw this one out there
for us possibly to discuss.

how supportive or nonsupportive have
your friends been in cargiving part of
our lives?

Suzanne,
If there is one thing I understand it's the need to hibernate after the death of a parent. How long has it been since your dad died? I'm glad you feel like reconnecting with some friends. i'm sure you have a lot of valuable advise for new caregivers. We learn so much in this process.

It's very kind of you to let us know that everyone on the forum helped you get through the last three years. Please keep in touch with us.

Vicki

CC-I'm glad you're getting some help-I most definitely hope it works out-liked your 5-minute relaxation techniques by the way.
Suzanne and M.-I have always been a very quiet,private person though it's hard to tell that here sometimes. Losing almost all my private time to being a CG was very difficult for me. Didn't help that between my family's problems and Debbie's health problems Debbie and I argues a lot for the first few years of our relationship. Too much stress. Credit-on my end-to my parents' 50+ year marriage for teaching me to hang in there during the tough times. We have a much stronger relationship now. Though my friends did disappear out of my life for the most part, I have to admit, I didn't exactly have much time to give them, either so what did I expect? My oldest and best friends understood and were there for me at least to talk to-they knew spending time together might have to be put on hold for an indefinite period of time and were still there. My way of trying to feel normal involved a local coffee bar. I made time to go there just about every day at least for a while. I made good "acquaintances" I did not expect to act as dear friends, but they also listened to me when I needed it but left me alone when that's what I needed. Having that daily glimpse of the "real world" helped me maintain a sense of normalcy when so much of my life was being turned upside down.
Now I'm at a point of trying to tie up loose ends of my CG life(though I may not be done Debbie is still at least stable enough I still have more freedom than I did before), and then I want to rest and decide which direction to take my life in.I've considered doing some volunteer work-for animals whom I love, and possibly for Hospice-though I'm not sure yet if I'm ready for that. Hopefully volunteer work and maybe at least a part-time job in the antiques world will give me a fairly gentle push back to the real world. Like you said, Suzanne, for now I want to hibernate awhile -the way's been long. Good luck to you on your reentry! Melissa

Hi Suzanne,
It is good that you are coming out of hibernation. It is good to be by yourself for a while to think and get yourself together, but there does come a time that we need others.

I am glad that the forum has been able to help you, it certainly has helped me. These are friends that you don't have to get dressed up to visit with. And, you can talk to them at any time of the day or night.

It sounds like you are ready now to go out into the world. I too, have always been bashful and have never found it easy to meet strangers. But, I think that caregiving has given us all a different perspective. I believe you will be able to go out there and make a difference now. Good luck with your future. Remember the saying, "Tomorrow is the first day of the rest of your life".

I want to thank all the friends on this board who helped me get through the last three years. I'm not a particularly sociable or outgoing person so many of you may not even know how invaluable you have been to me as friends.

About my friends on the ground (as opposed to the online friends)...I have to thank them all too. It is true that there was only really one dear freind who was able to see it all the way through with me to the end. Maybe because she had already dealt with her parents and so understood so much. But so many people helped me with understanding and kindness...sometimes in small bits of time...as much as they could.

If you expect too much of friends they will disappoint you. I knew that listening to what was going on with my Dad, problems, the family hassles, financial and care hurdles etc. must have been exhausting for my friends. I tried not to expect them always to be able to help or to have the emotional reserves to help. Tried to remember that they had some things going on in their lives too. Anyway, I was lucky to have a lot of kindness.

Goodness knows I needed it. Funny that friends helped when family was absent.

What also surprised me was that sometimes when I was near to breaking, I'd spill everything out to a stranger. (Now that is when you truly know your near the end of your rope.) But those strangers where always kind. Humanity is perhaps what that is all about.

Since Dad died, I've sort of hibernated. I think about getting in touch with friends but seem to need some isolation. Think I am about through with that process and need to start reconnecting. It is my turn to be a good friend to others again.

Suz

May,

I am with you as a sole caregiver to my mom, I feel like I have lost so much by moving here to take care of mom.

I was very active in my community back home, and busy running my own business too. I could do anything I wanted, when I wanted. Now i just want to be alone sometimes.

Mom's constant demand for 24/7 attention is draining sometimes.

My friends still call if not quite as much. Miss my friends most of all. We always did lunch, dinners, holidays, and lots of phone calls.

I am getting involved in my new community. I got a respite caregiver who starts on Wednesday. She was a volunteer at the local hospitality program that is reorganizing, so she is experienced and only lives a couple blocks away. So say a prayer it works out.

Maybe I will get a little bit of my own life again with someone who can talk a full sentance.

Shelly,
This is a great subject. The lucky few that have had friends stick by them are nice to hear about for those of us that were not so lucky. May and Margaret have both made good points. To preserve the dignity of the person it might be good there are not a lot of people coming and going.

May, your point about needing to be by yourself for a time. When I was a caregiver that is all I ever wanted. To be able to have some time just for me. Without anyone needing my time or attention. Being cut off from the outside world is the most difficult thing to deal with. Without my online friends I would have gone insane. Especially the last couple of years.

Vicki

MWhite, I understand what you are saying, You reall cannot relax wih company with so much to do caring for hubby.It it time consuming and when there may be someone around you become some what anxious.To be able to find a happy medium would be nice.

Shelly, I know the feeling.I love people some time but there are times when I just want to be by myself.With 3 people in the house that need me I hav o find a place to escape.I will come to the forum, go out into the yard, Or pick up a craft.Ilove getting in the car and just going shopping buy my self.It is the best feeling when I leave the driveway and I do not have to hear or think of every ones problems.I do have a great friend that has helped me with my aunt.She has dealt with the problems of the sick and nothing frightens her away.We have laughed together, sometimes like children, we have cried together, we really are friends in the truest sense.we have been friends for 25 years.Friends that share their weakness and not use them against each other.We have always been very supportive of one another.We should not be surprised when friends seem to abandon us when some family members do the same.

I believe the fact that we cannot do what we wat and how we want is the tougher of the two.We have no control over our days .These diseases have taken over .tHE WORST THING TO DO AND HAVE HAPPEN IS FOR ONE TO BE CUT OFF FROM THE OUT SIDE WORLD.We need to have the contact to act as a stimilant.A person that you are compfortable with just being you.

Hi Shellyd,
I am one of the ones whose "friends" disappeared. My husband has had a couple who still check on him and one who brings us fresh garden vegetables and fresh eggs. That's 2 or 3 out of what he thought were dozens of friends. My friends disappeared quickly because I could not get out to meet for lunch etc.

Actually, now that my husband is bedridden, I am not sorry that I don't have a lot of people coming over. I would feel uncomfortable having to care for him, feeding him, changing diapers, bed baths etc with other people in the house. Having to put up with home health nurses and aides in my house is bad enough. I guess I am just a more private person.

was curious. so some folks have had their
friends be present during the caregiving
experience and some have not.

those who have had their friends stick by
them have been blessed.

like it was said that's how you tell the
difference between friends and acquaintances.

may-yes when your time is limited especially
when you're paying for respite and even when
it's free, you dont have patience for that
"always late" friend.
or your friend is calling telling what a wonderful time they had doing this or that, you do feel left out. all the more reason to REALLY enjoy yourself when you do get out so you can have a balance.otherwise resentment sets in.

then sometimes you dont feel like dealing w/others. so when you get respite you want to go it alone. you're surrounded by people all the time; lo's,aides. do any of you feel
like that?

my friends have listened but only one
has been in the trenches and not
frightened off by the behaviors. her mom
had ad so she felt a connection.

but i havent been there for them either
as i've cut myself off in many ways.
so it seems we must reconnect and discover
new friends.

As I was thnking about Shellys' post, I see another side of being the sole care giver.If you have been a very active person, involved in your community,went shopping , did all the things that gave you pleasure.You could go at a moments notice.No making sure of his and that.Then all of a sudden this is taken away.Your life is not your own.You have lost the freedoms you enjoyed.If you do go out you have to find someone to come and sit, you have to make all kinds of preparations before you go out.You have limited time and when you are out your mind is at home, wondering. Your friends and family continue to do all the things that you were once part of.You will talk with them and they will share what a good time was had, etc.You yell them how wonderful to hear but you feel so left out.You get the sense that you are now on the inside looking out.You yearn for the wonderful times you once had.You begin to feel so isolated.In many ways you are.It is like the world continues but your world stands still.Like out of site out of mind.It is very difficult to be in this situation.If you feel this is happening you reach out to someone .Find something to keep your mind stimulated.Call in favors.Your life is as important as the person you care for.I think many times we spend more time on the patient and no time on our selves.When you think about it that is really mind boggling.Then we lose the loved one and we have to try to get ourselves back on track.I believe we owe a part of ourselves but not all of ourselves.

These past 41/2 years,all our friends have treated us with respect,& acceptance.They even call to see if i am ok,or need anything.........God Is Good!!

Hate to say it shelly, but most of my friends disappeared in the first year. Like May said, my true friends I do not need a census taken to count-about 2(maybe 11/2). The impression I got frm people was that I depressed them and they didn't want to be around someone who wasn't fun. Some had too many problems of their own. Hurt at the time, but now I figure it's taught me how to differentiate better between real friends and acquaintances...

Shelly, it sounds like your friends have not been there for you.First I am not making excuses, but sadly, people are running a rat race.They seem to have more and more put upon them.I hae 2 ladies, friends, that have come to my rescue more than once.These 2 also have alot going on in their lives.I do know that I need them all I have t do is call.You know the song"iF YOU NEED ME CALL MY NAME,I"LL COME A RUNNING LIKE A CHOO CHOO TRAIN".Iknow the limits of what they are able to give.For others , the friends seem to have abandon.That is why I say you can count your true friends on one finger, the others were just acquaintances.It is hard to understand, but they say you never know who your friends are until the shit hits the fan