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Lkaibel

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I am crabby tonight. My husband is in pretty decent shape. A year out from diagnosis, he still walks with a can and can drive. I think that a walker and no more driving are coming up, I am encouraging these things now gently. Still we are I know fortunate. At a time when some PALS have already passed on or are much much more disabled, mine can still handle most ADL's.

My gripe tonight is friends who try to make it seem as if they want to get together, but really don't. A long term friend tonight had made plans with me, but when I texted her that I was looking forward to tonight, I found out she was going through squeeze me in before she saw someone else. Her excuse was that she "totally forgot" she was suppose to be cooking for her for some gathering. Then she tells me this person is getting divorced and having back surgery. My friend gets together with this person all the time, she does not work and is on disability. I am leaving town Wednesday and am off work until next Tuesday. Truth to me is she did not "forget" anything- she doesn't honestly want to see me particularly one on one but she wants to play off like she wants to see me. It makes her feel better about herself as a friend.

I think kind of the same goes for another friend who texted me that she was thinking of us and wanted to get together- then again found no time whatsoever during my vacation or even in the next few weeks to do so.

Dang it anyway, it's not as if I sit with my head in my hands announcing that my husband is terminal and sobbing. People literally fear the reality of what I face, what we face even as we throw it on the back burner for their benefit and just to get away a little fro. Our own stuff.

I also understand that getting divorced and having back surgery sucks, but did I really just hear a woman I have known for over a decade tell me how much this other friend is suffering and needs her? I am going to go ahead and be an incredibly selfish fill in the blank and say yes that does all stink, but at least no one is going to die behind it. At least she will be single by choice.

I am doing all this stuff I did not have to do before as Brian gets weaker, I work 50 hours a week, and sometimes I get to feeling so alone. We have a couple friends who have not been afraid of us, and wouldn't you know they were not the ones we would have described before as close. The close ones, with few exceptions have been the avoiders.

I know, I need to quit with the self pity and the anger. Tonight is just hard.
 

Jrzygrl

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Gripe away!

It stinks when "friends" are not there when you need them. People really do show their true colors when things get rough. I DO think that some are afraid - afraid to say the wrong thing, afraid that they really don't know what is going on, afraid to see and hear the hard truth etc. And I agree, we have some friends, who were not the ones we had not considered particularly close, come through with flying colors!

I had to push my husband to go out when he first was in his wheelchair. But as we have, people see that he is the same person. And I think it has put them more at ease with the both of us.

We are lucky. We have had friends rally round. I hope you find these friends and they lift you up!

Hugs on this rough day!
 

pdcraig

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Hi Lenore,

Crabby is just fine. The reality is that this can be very isolating or at least it has been for me. Our friends are great with my PALS but will only come if I organize the visit. They're quite supportive of me but again if I'm the one who comes to them. I don't think people realise how much this takes over unless they experience it themselves.

I agree with Jrzygrl, people are just plain afraid. They don't know how to deal with someone who is dying. What I hear all the time is they don't want to intrude, they want to respect our privacy. I think in some cases people feel flustered when they can't do anything to "fix" the situation. You can let a friend going through a divorce cry on your shoulder and tell them everything will be okay. You can nurse a friend through illness or injury and tell them everything will be okay. Being there for someone who is dying or the people closest to them, you can't really say that is going to be okay.

I find it funny there is so much support in grieving but no one tells you how to live with a situation like ours. We all figure it out day by day. There is no shame in the occasional pity party, we've earned it. Anger is okay too, sometimes people suck. Try not to let it get you down too much.

Big virtual shoulder for you to lean on, and a hug. You're not alone.

Paul
 

affected

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It was the same for me.

Acquaintances stepped up and did beautiful things, but friends vanished in the mists.

Everyone wanted to race around soon as he died!

I worked to put some friendships back together in the first year after he died and then realised it was too much effort and most of those people are completely gone from my life.

It SUCKS. We hear ya!
 

Lkaibel

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I think it's a good "weeder" inside ways of the people who are friendships worth maintaining. In the instance that set me off last night, I think I looked bCk over the past decade or so and realized I should have cut that off some time ago. She is a Prima Donna type who builds her social life on getting others subtly to take a number and stand in line. Good riddance. I hear you about "too much effort" Tillie. Some of those folks you were likely better off without.

Paul I think you are right too about people's frustrations that they can't DO something. I hope they never have occasion to find out how silly that is.

Teo long term friends has been pure gold, and as I said some casual ones have really shined. We are thankful for that.
 

KimT

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Lenore,

When I was first diagnosed (and fully functional) I had dozens of people who said they'd be with me. Well, they aren't! I can count on one hand the people who will help me.

I was always the one who helped, who put on huge feasts for these people, who gave them money when they were down and out, and who they came to when they needed advice or anything else.

This disease is very revealing in who your true friends are.

I actually had a friend of 35 years come over last week and all she talked about was her medical conditions! Very dramatic. I said nothing about ALS. She came empty handed and it was the longest three hours I've ever spent. This is the same person I moved three times to get out of abusive relationships, gave her $300 for a cat deposit, and another $2,000 to move.

Sorry to steal your thread but just know you aren't alone.
 

Lkaibel

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Wow Kim that just sucks. It's a cautionary tale about friendships for sure. nope, no threadjack in my book because it is interesting and beneficial to us all to share experiences on this topic.

One thing I encounter too is people who sort of don't knows what ALS is. My husband was like that before he got it. In the 21st century though, if a friend is Dx'd and you don't know, it's because you chose not to learn about it.
 

littlered

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it's because you chose not to learn about it.
Exactly! That is why I have read this forum since my PALs diagnosis. If I want to support my friends, then I need to know what they are dealing with on a daily basis. I don't need to know the nitty gritty, but I do need to understand what they are up against. How else can I support them?

It saddens me to see all of their friends disappear, just as all of you have commented. Thank you for reminding me how important it is for my husband and I to continue to show support.

(I'm not looking for a pat on the back, as I know they would do for us what we do for them)
 

Manhattanite

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I completely understand your position - friends and family have also been split into camps since the diagnosis, ranging from super helpful and involved to complete denial or lack of awareness.

In all honesty, I set out not expecting anything out of people because in the past I had not been the most supportive person when friends or family had had health issues. But now that I have lived through this, I find that I am much more supportive of others.
 
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Cattaztrophy

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You do get to know who your true friends are. We have friends who do their best to help us in lots of ways and yet, my PALS has family who drives right by and never stops to see him. Then they send and occasional cards that says sorry we can't do anything to help. They've never even tried. Shame on them.
 

KimT

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If people say they wish they could do something to help, hand them this attachment along with a list of things they can do to help.
 

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vltsra

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Lenore, when my PALS was first diagnosed, I was in a state of shock and depression and really needed some support. There were 2 couples who I considered close friends who told me that I was overreacting and told me he probably did not have ALS - after 2 neurologists told us that he did. One of the women was someone I thought I could count on especially. She lost her husband years ago and went through a very difficult time, so I thought she would understand. She was probably the least supportive. The other woman kept talking about my duty, and how hard it was that her mother had breast cancer. They haven't asked how he is doing in months. As those of us who are here know, months can be an eternity in ALS terms.

The wonderful thing has been the people who have stepped up and been there, people with whom I wasn't that close before. It's just as you said. And one of my oldest friends, my college roommate, flew out here to stay with me last summer when she knew I needed someone to be with. My husband, too, has had people really come around and be there for him. So I'm really grateful to have these precious people in our lives.

I don't know how many of these people will be around when things get more difficult. Right now with a slow progression my PALS is doing OK. I'm feeling really overwhelmed as I'm taking on more of the household and marriage responsibilities that he can't deal with. The road ahead will be hard. I hope of few of these friends will still be there.

V
 

Ceelea

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Another voice in the chorus - I certainly am sharing all these experiences. My friends have virtually disappeared - not one lunch invitation from a colleague, not one friend has come by to chat with me and have a coffee or a glass of wine with me since I started staying with mom. I don't think it's whining to say that these are also people that I, too, went out of my way to give time and attention when they needed support. Sort of feels like without me being able to make the effort, their interest and ability to do the same is just gone. Maybe people who organize friendship events just end up in relationships with those who don't have the ability to do so. And, perhaps, they believe I'm "too busy for them to bother me." FWIW, do ask them to let me know when they're free for lunch, or if they'd like to stop by. The reality is that, outside of working hours when the aide is here, I have to be with Mom.

On the other hand, mom's colleagues and friends have been amazing. Someone comes by daily to visit, family members who have been distant are making real efforts and several folks have adopted regular "duties" that are helpful and fun and supportive - all on their own. All this makes supporting her so much better.

What's interesting is that I'm a little wistful about this, but not sad or angry - actually, I'm grateful that my PALS has support and distraction when she needs it most.
- cee
 
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