Husband with dementia and now I dont know how to handle "friends"...Up until now they were understanding.

True friends would be there for you. Family members act just like this too. There is no acceptable excuse.

Every caretaker has gone through this experience. Friends abound during the “good times.” They disperse when things get tough. Maybe they even say that you aren’t “as fun” since your husband became ill. Maybe you don’t feel as fun. Maybe you don’t want to be fun. Maybe they aren’t as fun for you either—-insensitively chit-chatting about trivial matters when your situation has grown serious.

You never thought they would treat you this way. You thought you could rely on them. Many of us have been there.

As time moves forward, more people will fall away. Not all of them. There will be some precious friends (and family members) who will stay around or emerge as supporters. These are your true friends. You may be sad that there aren’t more of them, but try to maintain focus on who you have, instead of who you don’t.

The silver lining is that you can be the friend you wish for—to others. These harsh experiences help us to learn how to be more empathetic.

When I found myself in a similar situation, a good friend told me that doing random acts of kindness (for strangers) would make me feel better. This works for me. I filled the void of helping friends/family by helping others. The good thing about doing nice things for strangers is they don’t let you down (since you aren’t around them).

Remember to be kind —to yourself. Take occasional breaks. Go somewhere that brings you joy. Get refreshed and rested so you can face your challenges.

These people are not friends. If they were, they would be supporting you. Dementia makes people feel uncomfortable. Never know what to expect.
So sorry, its now you really need them.

I would be curious to see how the others feel. This could be just one person out of the group. It would be interesting to find out. Do you have the gumption. I would also try to think up a good comeback.

So sorry.

Thanks for replies. I just think they are party people. That is all they want. I saw that with husband in hospital, he almost died. He does have dementia, and he really is no trouble when we go out. I pay the bill for food, he sits quietly and really isnt bad. He does tire easily so I drive now instead of going with friends. What am I suppose to do, put him in a closet. I think there is one gal that has this "couples only thing going on" and she was kinda telling me he isnt going to makeit, so best you move on. But to make them uncomfortable a little while longer, I will go to a couple of events that wee already planned. Its the talking behind my back that I resent . . And when they see me, you know by looking at them, they feel guilty...I think they want me to say I need to step back. But I wont , not now. Not yet. We are all in our late 70's and 80's. They are facing this at some point, how foolish to do this to me now while I struggle to keep it together. They plan dinners at restaurants far away knowing we cant make it. But this is a small community so I have to ease out on my terms and keep a friendly hello position with them. I miss my husband everyday...of the man he was...he is here...but not really...I get lonely and now these people abandon me. You never stop learning, I guess. I only knew of a trip they all planned becuse my cousin is part of the group, she was mad they didnt tell me. She said we know they just want to party so accept it for what it is. Gee, I thought I had friends...so disappointing...I would never do this to anyone, ever. When parties were at my house, they used to say...Joycee's house, joycee's rules, because I invited divorced friends, widows, widowers...They would never do that. When will the sadness which is my life be over...No one can understand dementia unless they are living it everyday.....

I’m so sorry you have been dumped by your “friends”. 6 years ago, my husband was dumped by his family. I understand how hurtful this is, how unfair and how angry it makes you. Unfortunately I can say these feelings don’t go away, at least not for me. I still get angry about it now and I hurt for my bed bound husband. Saw my niece last weekend and she never even asked how her uncle was. Haven’t heard from his family in years. I told my son, who wants to have “the family” at his house for a get-together that if he does, I will not attend. I will forgo seeing my grandson to not have to breathe the same air as these people.

Make your own good time. Go to movies, dances and to dinner just the two of you. Find some new interests that don’t require being part of a group to be fun. Your good time doesn’t need to depend on a bunch of fickle jerks. Who knows. If you do venture out, maybe you’ll meet new people who can share new experiences with you.

I'm sorry this has happened. Even though, it's not right, I might explore a little to see exactly what is the culprit. I wouldn't automatically write them off as being horrible people. What I discovered when my LO was diagnosed, is that all of her friends and family on one side of the family dropped off the face of the earth, no card, no calls, no letter, no visit, not anything, since they got word of the dementia. That was five years ago. So, to me, they just aren't interested and fear they may be asked to help out, spend time, visit etc. and they aren't inclined. So, to me, that's okay. I have made it this far and I really don't care if they ever try to reach me about her.

However, with your friends, it might be that the social gatherings that you had made them feel uncomfortable with your DH, who has dementia, around. Did you notice anything that DH said or did that embarrassed them? Did he repeat things a lot? Did he make inappropriate comments? I'd try to be as objective as possible in order to determine if that is the case. Many people who aren't familiar with dementia are confused and uncomfortable with someone who is no longer acting like themselves. I would try to move past it if that is the case. To me, there is no excuse for not sending cards and well wishes though. They may just not know how to express their sentiments.

I actually consider myself fortunate that I was given the opportunity to learn so much about dementia, since my caregiving began. It causes you to reach deep down inside and summon strength, compassion and understanding that you never thought you had. So, if they stay away, it's their loss really.

No-one else in the group has experienced this, with a husband and probably not with a parent either. They don’t know what to do, what to say, it’s all very uncomfortable. One last try you could make would be to write a letter to them all, saying how you miss them and how much you would appreciate their company. Tell them how you could all cope if you came to the dance with your husband – he would be happy to sit there and watch, him being there wouldn’t impose on the others, you would enjoy the occasional dance with another husband – you don’t ever get a chance to dance now.

Perhaps you won’t get any reply, and that settles everything. But if they really don’t know how to act in what is a new and difficult situation, it might help them and you.

Joyee,

Can I say this is just crappy. However, I have notice when I got sick a few yrs back and money became tight our friends drop like flys. We don't see or talk to them anymore even as things have gotten better for us.

I think some people back off out of fear that they are reminded about just how fragile life it or can change at a drop of a hat. Some may just simply don't know what to do or say. The thing is I bet one of them will have a similar situation come into their lives and they will remember what they did. We all pick some people to become friends with that perhaps we should have let them go by instead of making friends with them. But that is just how it goes. My BF and I have just found new things to do.

I am sorry that just when you needed them the most they choose to leave. But like JoAnn stated they really weren't true friends and like others stated they just may not know what to do. As Ahmijoy stated just find new things to do. These freinds have no idea what it is like.

I am sure that things will work out for you and DH it just may not be what you were thinking.

I wish you and DH all the best in the wishes in the world.

We have a similar situation - what I've come up with is people know what to do with a short hospital stay (go visit, take flowers) or a death (bring food, go to funeral, send flowers).

But with a long term illness, I think it's a combo of not knowing what to do, not asking what would help (a restaurant closer to home, a golf course with level terrain), not wanting to change the way they've always done it (we always do X on this day), self absorbed natures, fear of aging, the uncomfortableness of being with someone in public who may misspeak or put ranch dressing on his pasta (my kids saw this and promptly did what their grandpa did).

These people haven't experienced what you have, and as we all know, you can't understand caregiving till you've done it. My dad said some crazy funny things when he had AD, and he had a wicked funny sense of humor pre-AD. I know my mom was often mortified at what people thought of his non-sequiturs and random comments. DH went to breakfast with the guys with his hair sort of duck feathery in the back from sleeping on wet hair - his friend was dismayed and made a comment. He had no idea what it took to get the morning ritual of meds, bp readings, bp adjusting, waking from a sound sleep too early, hoping the Sinemet kicked in to get everything rolling in time.

I think it's just that there are different kinds of friends - my BFF would've been here doing laundry and mopping floors to help, the in town socializing friends were kind of absent when we couldn't do the physical stuff like sightseeing. You just have to figure out which they are, accept and go from there. I think we're meant to rearrange the people in our lives, as our lives change.

I've found a wonderful group of ladies whose husbands are in DH's PD exercise classes. We've bonded, we laugh, we exercise and burn stress, we swap anecdotes. For a few ladies, this is the only social life they have now. We still see the first group from time to time, and I'm perky and chatty. But I also don't hesitate to refuse to discuss things I don't think they need to know. I've been working on letting go my negative feelings toward them - disappointed is fine but pissed off only hurts me.

Only go to the dances if you two enjoy it and you don't feel uncomfortable - don't go if you're trying to bring them around. The friends aren't likely to come around (until they're in similar shoes). Hugs -

It sounds like this is a social group not deep friendships. Change your expectations Personally I would not go out with them anymore if this is the collective rule. Why put yourself in that position? Suggest instead you invite your widows and now singles that you included in parties to visit. Reach out to those who have been in tough situations in life already. They may be more authentic and kind. They may appreciate the friendship. Also I agree with another to not call your husband sick. Makes him sound weak or contagious.

I'm so sorry you are going through the loss of what you thought were friendships. I believe we tend to reflect ourselves into others; so being a loyal friend, you reflected/assumed these friends were like you. The fault is in them and not in you. You just need to find a few people that are more like you.

Rather than working to retain old disappointing relationships, I would encourage you to develop new or deepen relationships you have with others. Those divorced and widowed people you invited to your parties are a good start. So are others married to an ill spouse. When some family members engaged in disappointing behaviors, I started inviting neighbors, friends, and members of the extended family that time and circumstances had left behind. My distant cousin that is now a widow and not physically or financially able to travel to visit her distant children has a place at my Easter/July 4/Thanksgiving/Christmas table. The older cousin that fell and managed to break both her arm and leg and isn't traveling this year, the neighbor that lives alone and gets summer visits from his kids, my cousin's widower who after his own parents died and his only child moved across the country suddenly doesn't have a dependable "go-to" family dinner anymore, etc. As for the immediate family that let me down, I still invite/let them know about my gatherings and interestingly enough, they seem to make more of an effort to attend now than when they were the primary guests and I tried to accommodate their schedules.

I realized a couple of years ago that my high school girl friends that are still around all have something difficult in their lives; one lost a child, two have been care givers to parents with declining health, and one has a disabled husband. We get together once a month Jan-Oct and they were