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By carman96 On 2013.08.01 21:22
I ran into an old friend of ours that we haven't seen in a couple years. I told him about my husbands decline. He said he would come by soon, maybe take him fishing.
I have heard this many times from friends and relatives. But they hardly ever come to visit. Who knows if they mean it or if they are just telling me what they think I want to hear. I just wish they would show up once in awhile. Should I be persistent and call them and ask them when they will visit or just let it go?

By Threadhead On 2013.08.02 15:16
[deleted]

By LOHENGR1N On 2013.08.02 16:40
carman, I think you have your answer in your first sentence unfortunately. You say you ran into an old friend you haven't seen in a couple of years. If it's been a couple of years then it looks like while the I'll stop in might have been a space or "dead air" filler (just something to say). Then again I could be way off and completely wrong and they will show up. Hope I'm wrong.

By carman96 On 2013.08.02 18:36
Thanks for the replies. Yes most of our old friends have fallen away. Al I guess you are right. If they were still friends they would show up once in awhile. I know it is difficult to see him this way. Skiing, waterskiing, motorcycling-- those are all things he used to do with this circle of friends and can't anymore. So I kind of understand about the friends. But that doesn't excuse family! His brothers don't live close but could make the effort to see him. But they don't.
They think we should come to see them or meet somewhere that is a two or three hour drive. They don't see him that often so don't understand how difficult that is for us.
Thanks for letting me vent!

By parkinit On 2013.08.03 12:25
I don't find this such an unusual statement. Yes, empty, but not unusual, unfortunately. I probably have been guilty in my "past life" as well.

I believe when we visit those who are ill, it makes us all face our fragile mortality. It makes us sad to see those in decline, it makes us glad to be alive and get out there to live and breath and enjoy as long as we can.

I used to visit a nursing home to visit a family member. There would be people at the door grabbing at my hands and wanting to detain me. They were desperate for attention and love. It made me sad, but wanting to escape as well. People evade what they don't want to face or what makes them uncomfortable. Seeing an old friend decline is uncomfortable. Some of us MUST face this due to the one declining being a loved one, etc.

I guess what I'm saying is I understand both sides of the fence now.

To answer your question, I do believe, too, that it was probably an empty statement to "fill the air."

By carman96 On 2013.08.03 19:04
Thanks parkinit, you are probably right. I know I have been guilty of it in the past also.

By lurkingforacure On 2013.08.04 00:25
Ditto here. I went to the facility every day, sometimes a couple of times a day, to see my mom before she passed away. It was so sad, not just to see my own dear mom there, but the desperate faces of the other patients there. I remember wishing that I could stay and talk to each of them, one-on-one, to hear about the life they had lived, the stories they had to tell, the children they had raised (where were they? why weren't they coming to visit?)....without regard to time, so that they knew they mattered, and that someone cared. It was hard going there, but actually harder to leave. I was always in tears when I left and had to drive around for awhile so I could pull myself together for my PD husband who was waiting at home. He didn't need to see me like that for sure.

At the same time, I get how people don't like to have to see the harsh side of life: the side we all inevitably face, that side where we get old, frail, slow, and for many, sick. Visiting a friend or family member with PD forces them to confront that reality. It is much easier to pull Scarlet O'Hara and defer facing that reality. People who are at peace with their lives don't seem to have this problem, but those folks are rare.

This is morbid, but I just thought: if you lose your loved one, will you let those "friends" who could not be bothered to visit come to the funeral?

By Freespirit On 2013.08.05 14:56
My PWP's own kids don't even come to see him and he's still at home.
But I'm sure they will show up at his funeral when he passes away. . .

Everybody has to deal with life on their own terms, I guess.

By lilflower On 2013.08.06 23:15
I know what you mean , my husbands kids come once or twice a year and they call about the same .Other family members don't call because it makes them sad how do they think it makes us feel. I just hope that none of them ever have to go through what we all do every day.

By mydear On 2013.08.17 02:31 [Edit]
On the question on why people stop coming, people often pull away from disability or impending death because they are uncomfortable and don't know what to do. Sometimes people need to hear how their visits are important and ways they can engage, ways to make it more meaningful for everyone. Sometimes it is the lack of discussion that creates more isolation. Discussion can bridge understanding and intension, and add meaning. The is a scene in the movie, The Intouchables, where the main character with paraplegia describes the annual "visit" with family. Everyone stoically sits rigidly in place. No real interaction. When the caretaker starts dancing and cutting up with the pleasure of dancing, his enjoyment becomes infectious and everyone joins in. The spell is broken. Fear and dread fall away and real human interaction breaks through.

By ysracer On 2013.08.19 14:40
I have found it's not only visits at home. We used to get invited to parties and events. But now we don't get invitations anymore. We used to get an occasional invitation. But most of the time we ended up not going anyway.
My wife would typically, at the last minute, no longer want to go. I think allot of it was she did not want to go and have people show pity, or stare, or feel uncomfortable not knowing what to say. It's hard for me, as I feel we are loosing friends and the longer we don't see them, the more out of touch we become. It's harder for my wife. She not only misses going to the parties, but now feels guilty for me missing them. Just another consequence of the disease, robbing both the patient and caregiver of their life as they knew it.
I just wish a cure could be found sooner than later. As I am sure everyone here feels as well.

By stillunsure On 2013.08.19 16:11
Reply to all the above. My husband is very early in his diagnosis and only exhibits tremor, but his anxiety level is high and he won't travel too far to meet with people.

However, on the other side of the coin (and this is hard to believe) the husband of one of our closest friends is in his 4th yr of dx and pretty far advanced. Since he was the most outgoing and intelligent of the two, I find that since he can hardly communicate anymore, we now end up staying away more and more. My husband finds it very difficult trying to make conversation with someone who can no longer communicate clearly, can hardly hold his head up straight, nor stay awake .. so we end up leaving after an hour or so. I believe my husband is terrified he will end up like his friend.

Having said all the above, I believe these are some of the reasons people stay away. It is a shame, but something I can almost understand.

By BCS46 On 2014.01.29 18:52
I am glad you posted on this topic. I have definitely noted change in our social life.

Not much anymore.


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