I would like to talk about what other's are experiencing with friends that were couples.
We had/have what I thought of as a lot (that may just mean I don't get out much). Because the university basketball team kept getting together and playing and then all got married plus a few picked up in other places like work - we had eleven couples that my wife and I were close to for over 35 years. We also never had children. So for us our friends (who were all couples) were quite important.
There was a thread started by Mimi related to this and friends have been one of the hardest parts about becoming a full time caregiver to my spouse (we were once a couple before I became a nurse).
Our couple relationships are disintegrating. Part because my DW is disintegrating. Part because we are in such a different place. Part because my life is changing so much. And part because we are no longer a normal couple.
Of all eleven lifelong couples - three people (no pairs) have stepped inside and are close. I can literally feel all the rest disintegrating and that 'couples' are not going to be part of my life anymore. Some of that is probably me, some that is them, and some the situation.
My question is - what is your relationship with previously close couples and how has that changed because your spouse has or had AD? And how did your feelings about that change?
I'm invited to a december annual brunch with the basketball group and a new year's annual three couple stayover. I feel annoyed about it because I'm not interested in pretending things are normal or going through taking care of my DW while everyone else acts normal the way we used to.
I'm getting a strong sense that this is a one way street. Is it all me?
Unfortunately that is the case in most instances. It definitely happened to us. G has ONE friend that takes him to lunch weekly, and I have four that I lunch with, but nothing with our old best friend couples..nada, nothing, zilch!Do I resent this? You bet! It is a very lonely life.
How true! I was always the one to plan things, invite couples to our home, etc. After DX, I tried to continue it as long as I could. Slowly, the couples vanished, except for two. Then the wife of one died and the husbands of both died this year, one just a week ago. The remaining widows and several earlier widowed ladies asked me (at the funeral) if I was having my Christmas open house! I told them no, I couldn't do it anymore - but I would try to come to theirs if they had one! Not holding my breath on that one. LOL
Funny thing. We have one couple who visits us and we go out to dinner with them. Otherwise, we go out after church with a group of friends, all widows, one widower. DH has one old friend from childhood who lives out of town who call periodically to see how he is doing. Since DH is an only child, both parents diseased, one cousin who doesn't keep in touch, it is only our kids, their families, and my siblings who keep in touch. I try to keep in touch with several good friends and see one regularly.
i agree with you wolf, its a one - way street. more like 'get the hell out of dodge' feeling. its rare that socializing still includes couples once AD hits the level that our spouses cant relate and its obvious to the others. like you i find it disturbing to act like everything is normal and the way it used to be. definately not and they know it as well and are only usually trying to be courteous out of respect and love for what 'was'. personally its very painful for me to see other couples hold hands hug or interact with each other around me knowing that part of my life is gone for me and my spouse. i prefer the AD or widowed groups at this point as there seems a common bond. while i do have two old friends of DH who call or emal occasionlly to ask about him, i do not participate in couples friendships anylonger outside of family. i feel like a fifth wheel =. but i know family does understand and accepts and yes, pities our situation. so much lost on top of all the stress of continual caregiving. like that isnt enough we also have to lose our friendships along the way. while i can empathize with their reactions to not wanting to be around us or AD, i can remind them that they should only hope nothing devastating happens in their lives, as they will see for themselves how lonely it can get. that usually is enough to get the idea across. divvi
No couples have stayed in touch here either. Wolf, our profile is similar to yours - similar ages, no children and always very active socially, but very few people, not just couples have chosen to remain in our lives. R. has a college friend who when I told him about R.'s illness, he said he didn't think he couldn't stay in touch. DH's family has totally abandoned him. It's just us now. Yes, I am angry about it but all attempts to try to change it on my part have not worked. I believe even close friends and family cannot deal with someone who has a brain disease such as AD and has difficulty having conversations and memory problems.
One of the first blogs I wrote was about socialization - http://www.thealzheimerspouse.com/socialization.htm
If you don't have an Alzheimer support group from which to make new friends who understand your situation, as I am lucky enough to have, it makes for a very lonely existence. As others mentioned, you gravitate towards new "single" friends with whom you soicalize without your spouse. Sad but true.
None of our "couples" friends remain. Once when I asked for a ride from a couple we had been friends with I was relegated to the back seat even though my fractured leg was in a splint I mentioned it would be easier for me in the front seat. I really wasn't after her husband <VBG>
I have three couples that my husband and I were close to, that still are there for ME. Since my husband hasn't been able to communicate in over a year, not even to say "yes" any more, two of those couples don't visit us socially right now, nor do I expect them to. If I need anything, I call and they will do it. And the moment my husband dies, I'll call them and I know that within minutes the Church membership and neighbors will know, meals will be arranged, someone will be here with me until my kids arrive and through the funeral, and after the funeral, they will have me in the homes, and invite me to go out with them. I am very fortunate.
We have our ultimate best friends who live in another state, but visit on weekends when they can come down, and they are here for both of us. They are also planning on taking me on trips with them AFTER, and have spoken of it to me and told me that they won't take no for an answer.
Strangely, I had thought one of my business groups had fallen by the wayside, until I got a beautiful card that they all signed, with phone numbers under their names and saying that anything that I needed, to call them, and that they loved me and wanted me to know that they are there for me. I am truly blessed by those who have stood by me.
Those that haven't, we both will just move on. I've discovered that life is too short, and this experience has changed me in many ways. And will continue to do so. I am determined to keep optimistic, and to have happy moments even during this last stage. I knew it would be rough, and honestly, socializing with others right now is not something that I want. I'm glad to know that my friends are standing by for me, and I have called and they have been here. I'm very lucky in that regard.
Of course, I must say that I have developed extremely close friendships with several here at Joan's place, and I'm keeping them until the day I die!
The same thing happened to us. I think it is because we don't have as much in common anymore and they don't know what to say to us and it is uncomfortable for them.
I think I am in that place now of finding new and more supportive friends..it is a slow process. In the meanwhile, it is just me, the two cats, Ebonie and Cookie and DH. I have my good friend Karen who owns the jewelry store. She is busy but when she knows you need something to cheer you there is an unannounced visit with a little pot of flowers or an email or something. Last Christmas she gave me a necklace that I actually designed and it is made of scrap gold..a woman sold her ring that she never wore that had a circle of diamonds and Karen didn't know quite what to do. I gave her an idea and she tried it out..put a bale on it of scrap gold..it was in the showcase...then for Christmas she gave it to me..the diamonds are pretty clean and the total wt is nearly a kt..and I keep it on all the time..it is a reminder that others have busy lives but that some really do care...it helps close off those pity parties...
But all that said, there are those lonely moments that hit when driving past the beach area or at church when I see families or just a couple...those moments just creep in no matter how we try to lock them out.
In general, people enjoy partaking of *fun* socializing with others who are in a similar life-phase. That way they can make goofy jokes about (pick one) [mean teachers/diaper duty/little league soccer/aggravating bosses/wedding dresses/vacations] with someone who's right on that page at the moment and will most "get it."
Furthermore, I would guess that most couples-socializing develops as something that fits into the fun/recreational compartment of life relationships, and may or may not get any deeper than that. So, when the commonality is lost, due to something like AD, the intact couple doesn't know how/where to fit the broken couple into that compartment anymore. They might feel bad, or wish they could, but they don't know how.
This makes me think of a great friend of mine with whom I shared an apartment in college. Following graduation our lives took different trajectories. I had kids young, she worked and traveled and didn't settle with the right guy and start a family until mine were teens. Now, mine are grown and hers are in the thick of middle grade schooling. As a consequence, sometimes her "fun" (or maybe light?) socializing tended to include people, not me, who mesh with her life stage better. As did mine.
However, she and I still managed--and still do--get together for coffee and talk a few times a year, and it's always a really good and meaningful time together, because we care about each others' lives, we just don't match up in such a way as to have more easy opportunities to get together. But this is because we developed a special rapport and closeness that I don't think always happens in light couples socializing.
And, as we all know, some people are so uncomfortable with Alzheimer's that it's like talking about Lord Voldemort with them. They just don't want to go there. So, while they may feel bad and wish you well, they don't have the skills or chops or maturity to deal with it. Others are, undoubtedly, simply hedonistic.
I think that's what happens with most couple-friends. Except for individuals with whom you have a deeper connection, or people who are just unusually wise, good, and attuned, you'll lose them once you've fallen out of their groove.
the one time I thought we had 'friends' when the going got tough they all turned on us. Hurt the kids a lot cause they lost their friends. Since then there have really not been any. We have had a lot of acquaintances over the years. We do have two couples we connected with this last summer and I was glad of that but they have their own lives, their own circle of friends. It seems people we did get to know and with family it has always been: you are welcome to come see us but don't expect us to come see you. Since then, if I got to know a woman he didn't like the husband or she was single. If he like a man I didn't like his wife or he was single.
So there is no one really. If we make it to Yuma this winter it will be to visit a couple we got to know while managing the RV park in Nevada. He husband has AD. She is older but we have always seemed to migrate towards people older than us. Even before we were old enough we hung out with the seniors group at church - they were more fun and less judgmental.
I have a different take on this subject. People for the most part are self centered pricks. Why would anyone want to be around us and our situation. Family should but even they fail you. Prior to AD do you hang out in nursing homes and visit people at home who had AD. They have the option not to deal with this crap and they can delude themself into thinking that they have charmed life and this would never happen to them. I do not blame them, given the option I would rather be doing a lot of other things than sitting at home watching TV with my DW to make sure she does not burn the house down whlie she is alone.
I think this is part of the acceptance phase. you just have to accpect that your life is changed forever, you have been stricken with AD syndrome and you can not escape it. Those who know you flee so that they do not get sucked in. They want the illusion of the perfect world and you and yours do not fit in.
Oh yeah, the couples thing. One of my pet peeves. For the most part, the women are still supportive of me, to varying degrees. However, the calls to set up dinner/movie plans, etc., have come to a schreeching halt although my husband can still enjoy those things. I have even mentioned to some of the wives that we have stopped dining out because when there's no one with us, there's no conversation and it's not much fun. I have called and tried to schedule plans, but it just doesn't happen. I have toyed with the idea of just coming out and saying "Are you all uncomfortable being around Steve?" and just getting it out in the open. Not sure if it is worth it, but it would be interesting to hear their response! It is clear that most of his friends have already written him off as if he is no longer alive.
We must be in the minority! We have at least 5 couples who are still there for us. We all go out every Friday night for supper and breakfast on Thursdays. They will stay with my DH if I need them. One couple even go on vacation with us. I've had people in our church who have offered to come and sit while I go out. I have found in the support group that we are the exception rather than the rule. What a shame!!!
I think you are on to something..putting it all out there. We sit and wonder and are hurt by not just the friends who now set us adrift but the family members as well. It would shock them if we did become so bold as to put the cards out on the table and in some way have them face up to the fact that we do realize that we are the group lepers now.
Yes, Mimi. It may cost us the last of our savings and who knows if we will make it back to the NW, but we have always wanted to go south for the winter and visit Quartzsite during the big RV event. Yuma will only be a couple hours drive if we don't want to take the RV up.
Emily, I think you have put it very well, I agree totally. We are lucky to have one couple that have remained true friends and see us every week. They ask me to tell them what kind of socializing would work best for us right now, and then they make it happen. Last winter we would go to a movie and then out for a meal, in the summer it was a bicycle ride for four with a snack at the far end. Now that that has become too much for dh it's just drinks at our house or theirs. Another couple that we only saw once a year has made a real effort to do things with us. Right now it is hard to find the time, with dh going to day care four days a week. His brothers live close by and are around at least once a week. So we are lucky. I am really more worried that the couples that we still socialize with may not be there for me when dh is gone. I'm increasingly aware that I need to cultivate friends that are for ME and not for us as a couple. Last week I went to a movie with a girl friend for the first time in years. I am in a book club of six women who like to do cultural things together and I can't participate much now (not being able to go out in the evenings) but I do feel that when the time comes they will be there for me.
Fortunately (or unfortunately) depending on how you look at it, nearly all of our couple friends were family. We just happen to live in a rural area where I am related to a lot of people either through my first husband or my own family. Charlie was not born and raised in this area. The couples are still in our lives, we just don't do "couple" things anymore. We used to go dancing, out to dinner or the movies. to someone's house to play cards, a cook out. We don't do that anymore because we CAN'T. I can not blame anyone for that. I do wish they came around more but they are busy with jobs, children and grandchildren. I know that anyone of them would be there in a minute if I need anything. Of course, that does not help the loneliness.
Mimi--I can tell from your posts that you would have the gumption to just put it all out there. However, it just isn't really my personality--I was raised to be tactful, not make people uncomfortable, not make waves, be nice to everyone, etc. But I have to tell you, the loss of some "couple" friends has become so irritating to me, I just might do an about face and lay the cards on the table.
Well as for us most all friends are gone. Oh now would I even call them past friends. Friends do not treat each other they way they have treated us. If I am left standing when this is all over don't want to see any of them.
We still have some couple friends but DH isn't as interested in socializing as he used to be. We've lost some couple friends but more because hubby hasn't wanted to keep in touch or accept invitations to do things with them. We've occasionally bumped into someone when we're out shopping and they are interested in "catching up" and hubby can't be bothered. Walks away or tells them we don't have time to chat . . . can be rather rude. Not at all like he used to be. There is one group of friends that he still enjoys getting together with but even when we are with them I never know how he will be-----one time he is fairly engaged and enjoys time with them and the next time, he is more withdrawn and wants to leave early.
I try to make time to get together with friends myself. At first, hubby wasn't too pleased if I went out with a friend for tea or a walk as if I was neglecting him. But we are home together a lot and from reading on here and elsewhere, I realized it was important that I keep in touch with friends. Find it refreshing so try to schedule in at least once every couple of weeks. Weekly is better though! Plus I used to run it past him if I was making plans with a friend (in the interest of good communication---ha!). Finally figured out that wasn't a good way to go-----he'd hem and haw about how it would work and what about this and what about that etc. Now I just make the plans, write it on the calendar and tell him about it close to when it's happening. He is okay being left on his own for two or three hours (especially if I'm sure to leave a snack ready for him). Guess I'll have to adapt plans for friend get togethers when leaving him isn't feasible. That will be time to get someone in so I can get out (and not just to do errands).