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We have a group of friends who did everything together. He can be disruptive and say things out of line, etc. They have been good til now, but as things progress, I doubt they want it to interfere with their "fun".

This has a lot of similarities with the situation of divorced women, particularly like my own mother in the 1950s. Couples feel uncomfortable, they don’t like the feeling that it could happen to them, they don’t know what to say, women feel that you would be looking for support from their husband, men feel that you would take their wife’s attention away from them. In some cases (like my own), couples have mostly socialised with people the husband likes, and the women aren’t that close when the men’s links diminish. You could try to see if you could go out with the group and leave your husband at home. Or try to make links with a social group that is a bit more varied, not all couples. Asking for involvement in small manageable chunks is a good idea. Waiting until a few more of them are in the same boat is another (bitter) answer. But try not to be too bitter. We have all lost friends as our life circumstances changed. The reason why your group of friends worked so well is not there any more – they aren’t necessarily false friends or bad people.
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Reply to MargaretMcKen
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Over the last 15+ years I have had stages of emotions on this question. When my husbands brain injury first occurred we had support from all of our friends. As time went on and his cognitive impairment, mood swings, and anti-social behavior continued they began to drift away. There were tearful discussions, a few angry conversations, unanswered calls, missing invitations that "got lost in the mail" and forthright confessions that they just "can't handle seeing him like this" or that "I have become selfish" and they "don't need friends in their lives who are not there for them". At first I was terribly hurt by it. Yet, I also realized that in many of our friendships we had been the ones who were the constant givers. We realized that by changing who we were it was only natural for friendships to change.

From another perspective, Pops really didn't do well in large crowds and now, the gatherings are smaller. He was angered and flustered by those who challenged him or asked him to remember things he couldn't remember. Now only the ones who "get it" and can play along are left as our friends. In general, as the years passed by, I found that this "friendship sieve" that seemed to be depriving me of my friends, was actually leaving me with only the best. Since my time is short, having less obligations is actually a good thing. I can spend what little free time I have with people worthy of that time and I can know that the friends I have left will be loving, patient and kind toward Pops. Those who drifted away, couldn't handle the situation, I don't hold that against them. People are who they are and not everyone can deal with what we live with right now.
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jacobsonbob Nov 16, 2018
"Friendship sieve"--I love it! This describes the situation precisely.
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This happens in many situations . I remember my parents losing dear friends they had for years when my father was dying of cancer . I have always thought that subconsciously people did not want to see what could perhaps happen to them .Also my husband worked very long hours when my children were growing up and the friends I played mahjong with would make weekend plans as couples and never include me . My sister was part of that group and even all these years later I still feel that hurt . They’d even talk about the great time they had the next time we played. I learned from that tho and tried always to be inclusive and taught my kids the same . When my sister got divorced and hubby and I included her in everything , she apologized and said she finally realized how lonely I must have been . I see now , with husbands Alzheimer’s , that people who I thought were just neighbors are really coming through for me while once again “friends “
disappear. Part of life and learning no matter how old we get and adjusting to a new reality . You basically lose your husband who’s been your very best friend of over 50 years plus others who you thought you could count on . You do gain new friends tho and additional insight !
Goodness I’m sorry that my response kind of turned into a bit of a rant .
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Have you thought about talking to your friends? It also sounds like you're blaming them for something that hasn't even occurred yet. Maybe they might have some input, but don't know how to approach you.

This must be a difficult transition, and it's hard to re-think "normal" when things like this happen. But I would encourage you to not limit your thoughts as to how to keep up the "status quo" as long as possible. Keep your mind open to new opportunities that can be a benefit to both of you.

For a specific example - when my Aunt's hubby was diagnosed with dementia, she tried to pretend it wasn't happening, and tried to make them both fit into all the things they previously did to, in my opinion, very little success and very little joy to either of them through his death. As contrasted with about 5 years later, same Aunt got diagnosed with Parkinson's. She gradually had to stop doing a lot of thing she had done previously. But she also started doing new things - like joining Parkinson specific singing group (singing helps keep the vocal cords open). She was 80 when she did this. She had never sang, been in a choir, or joined a social group before this. So it was 100% new territory, and not something that she would have considered before her diagnosis. But it was something that gave her joy and purpose. Personal opinion - if she had considered trying new thing and new ways to live when hubby had dementia, instead of trying to force them both into the pre-diagnosis mold, they both would have enjoyed the time they had left together more.

But then again, this is a really tough idea to embrace - especially if you had a clear picture of what your Golden Years were supposed to look like before this devastating diagnosis. Be gentle with yourself - you're doing a great job and it's clear you love your husband and want what's best for him. You're a really good wife.
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I think most people want to be kind and inclusive, but only up to a certain point. I know of a group of ladies who met to play bridge for many years, at first they just let F play along but as that became impossible she was allowed to attend but asked to sit out - not uncommon because there were sometimes an odd number of players. Eventually though even that accommodation became impossible.
I think if you wish to maintain a friendship with this group you are tho one who needs to be flexible and creative - instead of dinners out perhaps coffee in the afternoon or maybe splitting the cost of a catered meal at your place. And as you've already mentioned, being willing to hire a sitter and go out on your own too.
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jacobsonbob Nov 16, 2018
Yes, I was thinking along the lines of your second paragraph. Joyce could invite her friends, and when her husband has "had enough", he could go to another room or to bed, and the friends could either stay longer or leave but at least she wouldn't have to leave if the others were willing to stay longer.
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I am sorry that this is happening to you.

The first thing that comes to mind is thr old saying, "you know who your true friends are when things get rough" is true. They may not mean to leave you out of the loop, but they may just not know what to do or say.
I have read so many post on this forum about how families & friends back off when someone falls ill for a long period of time or is dying. Why? There are many different theories/opions.

Some my suggest that you call your friends and ask for a small favor, this giving the opportunity to open the communication door. However, if they are not taking your calls and not calling you back than there isn't much you can do.

People become weird or different when it comes to long illness, death, or money. This is coming from my own experience.

So what do you do now? Nothing! In my opinion if they were truly friends than they would still be with you or at least one of them would reach out to you.

If any of your so call friends had anyone in their life with dementia they would have compassion for you, and if none of them had any experience with it have no clue just how hard it is--therefore not able to relate to you. That is just how it is!
Join a support group in your city. If you have family members ask them for help. There are hotlines you can call if you just need someone to talk to, and now you have us on this forum. I have found this place as a safe haven. Take one day at a time.

I am sorry that I may come off harsh. But people will be people! I hope at least one of your friends come around in time.

I am truly sorry that your husband has dementia, and that your friends have left you.

May God be with you in this trying time in your life and give you strength to get through it in Jesus' name. Amen
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joycee1 Nov 13, 2018
thanks so much. I can really understand t. He can be disruptive and say things out of line, etc. They have been good til now, but as thingsprogress, I doubt they want it to interfere with their "fun". I take him to the clubhouse activities, and when he gets cranky I take him home. But for going out to the beautiful dinners we used to do, I cant, he can be just cranky and want to leave. And they dont want to leave. So not mad at them, where I live we have the "widows" table at every function. I used to look over and say I didnt want to be in that group. But there I may end up. no complaints, had a good run. Thanks for understanding.
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Agree with Margaret. Widows and divorced people go thru the same thing. Me, it may be because my husband is very hard of hearing. Doesn't do groups well. I also went thru a divorce before second marriage. It was hard for me dealing with my Moms dementia. She couldn't hold a regular conversation. And like you said, they get overwhelmed when out in public too long. Mom lasted about an hour. Its hard for people who have not gone thru this to know how to deal with it. Me, I wouldn't want to be the 3rd or 5th wheel.

I have breakfast with a single friend when husband golfing. Until lately, a childhood friend and I went shopping and lunch together. Maybe you could try this.
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I can see both sides of the issue on this one- on the one hand, it is difficult to deal with certain aspects of dementia. People affected by the disease tend to lose that social filter and may make other people uncomfortable with socially unacceptable behaviors. One of our neighbors stopped coming around because my grandparents always fought. So I understand it- why subject yourself to that negativity if you don't have to? In reality, who would do that?

But on the flip side of the coin, real friends don't abandon you, either. If they were really your friends, they would be there to lend an ear to listen, or a shoulder to cry on. They would offer to take you somewhere for respite from caregiving duties, etc. Real friends are there for you when you need them most. Unfortunately, it doesn't sound like those people are in that category.

Friendship sieve is so accurate. Time to make new (better?) friends! I recommend joining a club, a hobby, or even a caregiver support group that way you can make friends that will understand you and better support you (or if there's none near you, create one!) I recommend Meetup.com. There's so many great social groups on there where you can meet people, make new friends and have wonderful conversation. And it's free- I'm going to one tonight at a BBQ joint. Sooo looking forward to that! Anyway, I hope this helps, and I understand what you're going through.
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shad250 Nov 16, 2018
LOL They're looking for an out .
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Try to remember you are the tip of the iceberg - as we age so do our friends - it gets harder to do things & slowly some thing are abandoned as too hard, takes too long & too much of a struggle to do - what percentage of skiers at 30 are still skiing at 75?

Some also may try to shield you from their issues because you already have a lot to deal with

Rather than the whole group just have 1 or 2 over at a time because people with dementia have harder times in larger groups - afternoon tea or lunch is better as those with dementia are better behaved early in day even a brunch would be better than a dinner & less work for you too
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Friends become friends because they share things in common. When you no longer have that bond, friends drift apart- it happens at all phases of life and this one is no different.

Are there any dementia support groups in your area? If so, attend a few gatherings, you'll have that instant bond and can swap stories, cry, and laugh with people who won't have to feign interest or understanding. What's the old saying? 'Make new friends but keep the old, one is silver, the other is gold.' Both are precious, but in different ways now.
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