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Reply by KathCull_admin
09 May 2014, 2:53 PM

Hi Lindsaymarie
I was just wondering how the last week has been for you. Were you able to talk with someone about counseling?

Katherine 
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Reply by Mary M.
24 May 2014, 11:58 PM

Hi Lindsaymarie,
I am new to this group, but I am not new to what you are going through. I am caring for my husband who has COPD.


When I was 28 I was widowed. I not only lost my husband, but I lost a lot of people who we counted as friends. Suddenly, I just didn't exist.

I think a lot of it is how uncomfortable they feel. Mortality is a great thing to talk about- we are so sophisticated, you know. It is an entirely different thing to confront one of our friends, our age dealing with death. This is one of the big reasons, I think they have been absent. There could be a lot more, like not knowing what to say to either of you.  Most reasons have to do with thier comfort level. Not a good excuse, but fear is probably at the heart of it.


When I was a teenager, my friends were everything- my dad was dumb. There is a reason for all the old adages like blood is thicker than water. Family really will have your back when things don't go well. My 1st husband's death made a believer out of me.  I also know the feeling of needing to cry or share bad news, but trying not to because you want to protect the person you are with. No one is strong enough to carry all this alone. If you try to protect her, she will find out anyway. Just be as gentle as possible when you share things with her. Remember, above all, she really wants to help you. Be open, don't find out later that she already knew and the time you could have been comforting each other- you both we being stoic to "save" the other's feelings. That would be a waste and a shame. Hold on tight to your mom and brother, allow them to comfort you. This is something they need as much as you do. They need to feel that they are helping you.

 There may be people that you may not have thought were very close who will step up and surprise the hell out of you. I really wish you the best. I know what it is like to go through this at a young age. Keep coming here, keep talking. I found angels here. People who really care. Talk to us, you are not alone.
Mary
      
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Reply by jorola
30 May 2014, 5:54 AM

Hi Lindsaymarie,

I truly understand how you feel about those friends that just seem to go missing. My first husband had a stroke and there was a mass exodus of friends. We were in our early 20's. No one could handle how he changed - personality and physically plus cognitively. It hurt really hurt. it was easier getting new friends because they never knew my husband from before. we divorced 8 years later because it changed both of us that we could not make the marriage work anymore. Now my fiance has lung cancer (just diagnosed). Not sure this will happen again with firends. I am older now and the friends I have are much closer knit. I just really some people can deal with it and some can't. Friends are people we can share with, identify with through all that happens in our lives. Our lives change so logically our friends will too. Hang in there.

Jodie
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30 May 2014, 12:30 PM

Hi Jodie,

Welcome to Virtual Hospice. I'm so glad that you found us during this difficult time.

Tracie, LyndsayMarie, Mary, Katherine, Kim, Brayen, Jenn and everyone else sharing on this thread, please come meet Jodie on the thread that she started and learn more about her and her partner and why she came to share with us.

so scared but somehow i need to find a way to be strong 

Colleen 
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Reply by Bubu
12 Feb 2015, 3:56 PM

LindseyMai, my heart goes out to you for the isolation & loneliness that our journey entails. Losing friendships and being disappointed with some of the closest friends has been the most surprising thing in this journey. I love the stage 1 and stage 4 analogy given above. My view is that I had three circles of friends: circle 1 was the closest and most intimate friendships; circle 2 was that of friends who are more distant or whom I see less frequently; and circle 3 was the acquaintances. I decided that I want to save my energy for my terminally ill husband and me. So I shrunk the circles from 3 to 1, and shrunk circle 1 to those who have been there for us. It is amazing how many strangers and new people have come into our lives. So for every friendship we have lost, another one has sprung up. I was very upset and angry the first year or two. And whenever I spoke to others about it, it would make me even more angry if they tried to "explain" it away. But for all the reasons given above, and hopefully with time, you will realize that some of the people you are letting go of are not meant to be around you. What has really, really helped me enormously is that I have two acquaintances-turned-friends with whom I meet once a week. It started as a group for eating disorder support, but we now talk about EVERYTHING. Every emotion I go through, all the difficulties and the challenges, related or unrelated to cancer, grieving or eating disorders, we discuss. I find from them unconditional love. It has helped enormously, especially since, as you mentioned, you don't always want to talk to your mom about cancer, knowing that she has wounds of her own. 
With my husband's family (he has brothers who don't ask much about him even though they live a few minutes away), I concluded that they are too scared to see him vulnerable, and as others have noted, his condition reminds them of their mortality. It used to anger me a lot. I now realize it is their loss, and that we each have our own journey. I also found that when I myself accepted uncertainty and the ups and downs of terminal illness, I was less angry. I can't change others, but I can change how I am with my husband's brain cancer. 
You have come to the right place for support. We are here for you. I give you a virtual hug and send you lots of warmth from Jordan. Hang in there. One day at a time. 
 
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Reply by Wingman
16 Feb 2015, 2:15 AM

I am finding these days that I feel anger towards some friends. Hardly anyone ever asks how things are going...and no one asks me how I am doing. I guess this is a bit unfair as I do not want anyone to know I am struggling at times...but things have changed-my life has changed, my focus has changed and it has been tough. It seems like no one has noticed. I have one steady peace and sanctuary...and that is when I ride my precious pony. I understand that no one understands what this quiet time means to me-how when I put my headphones on and work with her that my mind can for a moment be quiet- that I desperately need this time to keep a sense of balance. When someone interferes with that I am not sure my reactions and resentment are appropriate...but at the same time..how can no one know. Just a mixed bag of feelings I guess.
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Reply by KathCull_admin
16 Feb 2015, 5:13 AM

Hi Wingman
I think you say it well - a mixed bag of feelings.  It can be lonely too I am sure, when you find your life is changing but those who have been close to you seem to be continuing on in life as usual.

How is your good friend?  

Can you tell me more abou your pony?  It's good you have been able to find that place of balance and quiet. 

Katherine 
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Reply by NatR
22 Feb 2015, 9:18 PM

Hi wingman,

i understand and what you mean...it's a lonely road for caregivers.
so many people will keep up the how are you questions and say take care...but after a time they don't know what to say,

i dont think it's really their fault.... They just don't have the personal perspective you do.
does that make sense.. .?  Plus they are fearful and don't want to say the wrong thing or perhaps hear that things are difficult - it really is a chasm - too big to jump across.

thank goodness you have a pony and can feel the unconditional love and acceptance from your four legged friend.

i think that's why a lot of people have pets, and in some cases like PTSD - pets become a trusted lifeline, no back talk or "get over it" or any kind of negatives...just acceptance love and support.

if I didnt have severe allergies I would definitely want a pet...just for that relationship.

sending you a hug from my keyboard to your screen...
best wishes,
NatR 
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Reply by oldbat
22 Feb 2015, 10:52 PM

Hi Wingman,

And Lindsay Marie , please let us know how you are doing.  Yes, we are your cyber friends, but we do care and would love to hear from you.

I could write a thesis on the topic of lost friends, but will spare you all that!  Isn't it amazing how, when the initial blow strikes, everyone rallies round and you are deluged with e-mails and voice messages which you are too tired and shocked to really answer.  But you do answer and wonder why they slowly, slowly taper off, until they're down to a few, very few,  stalwarts who not only call and visit your love one but actually show care for you.

Cherish those few, their ranks also diminish as time goes by.  I am currently left with two or three current friends who care for both me and Karl.  That's enough.  It has to be.  But I dread further erosion.

What keeps me going and, on some days, actuallysaves what little sanity I have left, is everyone on CVH.  Without you my life would be so much bleaker.

Thank you, all of you.

oldbat
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Reply by marstin
22 Feb 2015, 11:41 PM

Hi all,

I rarely find time these days to respond to posted messages but I do read them and what I have found is that again and again the same issues seem to arise from grief. Having lost my husband and my Mom back to back over 2 years ago I can say that you do get through it but are never the same person you were before it happened. Sadly, having friends and family members disappear when you need them the most seems to happen far too often. For some, I know that they are frightened by death, some expect you to get over it quickly, some are awkward and don't know what to say. Whatever their reasons for deserting you, it causes even more pain to deal with. In my story, I found that I had to remove some people from my life that were insensitive to the pain I was in. One person that I relied on and trusted whole heartedly, dropped out of my life after 6 months and it crushed me. I felt like I had to claw my way out of the devastation time and time again. What I did find was that a few old friends and a reconnection with my half sister helped me keep my sanity. None of them live close to me but the support from them will always be so appreciated.

My daughters and I have gradually rebuilt our lives but it is not an easy process. I have managed to find new friends who are supportive of me and accept me for who I am. Maybe it's because they didn't know the person that I was before my world came crashing down. It's all about taking it day by day. You almost feel like you're out on the ocean and sometimes it's calm and other times it's very turbulent. Sometime's there's a bit of sun and other times it pours rain. Whatever you are feeling, it's okay! No one can tell you how you 'should' feel, they don't live inside of your mind. They haven't dealt with the illness of your loved one or the pain of loss.

Wingman, I can understand how healing it is for you to get on your pony and ride. For me it was working in the garden. Never being the gardening type, I found it very soothing and calming. It helps you believe that there is still beauty in the world. I made a comment to some friends yesterday about selling my home of 16 years and how my new place won't have a garden to work in. One of the people sitting with me told me to 'suck it up'. I have to admit that I was very offended. My garden has been my sanctuary and helped me retain my sanity when I thought that I couldn't take another step. When the world deserted me, my garden's were always there for me. It is not just a garden I'm letting go of but the releasing of another part of my life as I transition into my new life. Ride Wingman, ride.

As you say oldbat, this site keeps people going. It is a lifeline for many of us. When I thought that I couldn't face another day alone, I found this wonderful place to turn to.

Hugs to all,
Tracie
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