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

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.

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.

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.

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.

Life Lessons Learned.

Luz went thru the abandoned by what she thought were friends. Only two people visited her. One from out of state. The other would visit when she wanted more pomegranates. Her I understood. Her DW was doing too well and she was taking care of him. The others were no where to be found, except at bingo talking about where she was.
Luz died alone and lonely except for me and one friend. I have actually mailed some of the little program cards the funeral home prints, so people can follow the services, to a few of them. Guess what! One has actually called, twice wanting to talk to me. HA! Not likely. Personally I want them to feel like jerks. I won't answer any of them should they try and contact me. I will just sit here and cry for my Baby.
Now that I am alone maybe I will look for a support group other than the wonderful people on here.

OldSailor

"Personally I want them to feel like jerks." Love it!

My Mom lived in this town for 68 yrs. She went to the same Church for over 50 of those years. Made sure her children attended Sunday School. Was on Committees, President of the woman's group , ran the yearly Turkey dinner. When she moved in with me, I tried to make people feel they could drop in any time. Left Mom to visit by going to my room.  Little by little the visiting stopped. When she was in rehab, I saw the Church ladies taking the time to visit Members who were there but they never visited the AL Mom was in. A couple of woman told me that they saw Mom while visiting a man who was a member and a miserable person. Not even the minister visited. I stopped attending Church. Ya think he called to find out why, no.

Its really not fair that we are expected to turn the other cheek. That even though these people did nothing for your wife, that we are expected to let that go and show compassion towards them if they end up in the same situation. Really! Do people really see what they did to you when u turn the other cheek.

Still waiting for an apology from a friend I have helped in the past who left me a nasty message about not including her in something she "assumed" I knew about. Pretty sure she knows the truth by now, I did not know what she was talking about. Oh, I'll be nice if I see her, but I may not be willing to help her again.

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.

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.....

They might feel uncomfortable. Like they don't know what to say? But then again, if they r ur real friends they should feel comfortable enough to talk to u about their fears. I hope everything works out for u:))

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 -

Then these people are clearly not your friends. Leave them be and do what you need to do for your husband as well as yourself then make it clear that when your "friends" can come by, tell them to talk a nice long walk off a short cliff. With friends like that, who needs enemies?

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.

Needhelpwithmom
There is actually an old country song about giving flowers while I am alive. I don't remember much more about that song. But it makes sense. flowers should be more for the living than the dead.

I am in the same situation; however, it is family! They seem to care sooooo much about their aunt and put on a huge show when something happens where she needs to be hospitalized, or when others are around; however, when we are just home and I and my 88year old father are the only caregivers around, they come for maybe 30 minutes a week, won't answer texts or calls about staying with her for just a bit, etc.
You are better off without them! I know it hurts...it stinks to know they are talking about you behind your back...but just let it go! Focus on your husband and caring for him. They will one day be faced with some type of situation where they too are in need of a 'friend' and no one will be there. My husband just says they will die lonely. It's tough at the moment....but as the Christ tells us in His Word, Sorrow and weeping may come for the night, but joy comes in the morning!

I am going to play devils advocate here....
Have you called them to ask if you can all get together for dinner?
Have you called and asked if you could all go to a dance?
Have you called and invited them all over to the house for cards or a game night?
It might be possible that since your husband was in the hospital for sepsis they might think that he would be more susceptible to getting the flu or other easily transmitted virus or bacteria and they do not want that to happen.

I found when my Husband was diagnosed and the long years until his death there was 1 family that stayed close. Now I will have to say that was because my husband did not have many friends we did not go out a lot with friends. I had a few friends that stayed close. At the funeral there were LOTS of people and my first thought was...Where the H311 were all of you the past 4 years! But I realize life goes on and I also did not reach out to them as I was busy with my "job" as a caregiver.

If after several attempts to reach out to your friends if they continue to decline invitations then you know that they are not the friends you thought they were.

I can suggest finding a GOOD support group. And there are support groups for people WITH dementia as well. If he is currently aware of what is happening a support group might be helpful to him. (My Husband never would have joined a group!) The people in your support group will be a port in a storm, an anchor for you and they will remain your lifeline.
If your Husband is a veteran the VA can help in many ways. I would not have been able to do what I did without the VA and later JourneyCare Hospice.

Oh by the way don't use the term..My Husband is sick....It may make your friends think he is SICK. We say we are sick when we have a cold, the flu and things like that that are contagious. He is not contagious. His brain just does not work right any longer.
And another thought...People are afraid. Dementia is like Cancer was back when I was a kid...no one talked about it. It was one thing you did not want to be diagnosed with cuz there was nothing that could be done about it. Like AIDS in the 80's..you did not talk about it, did not want to be near anyone with it cuz you might "catch" it and there was no cure (still isn't but life spans are amazing now)
WE need to be the Educators the ones that can let people know that someone with dementia can still enjoy a good meal, go for a walk, play a card game...the more the person is active I think the better their life. As they decline you can adjust your games, walks and dinners can be adjusted to make things easy for all. (If there was one thing my Husband loved to do was eat and since I had no conversation with him I would have people over for dinner at least 1 X a month and it was great for me and I think he loved it as well. There were challenges but it was never a big deal.)

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.

Find new friends and sounds like both of you are social, you'll have no problems. If your old "friends" drop you both due to illness they were never your friends. If one of your old "friends" or spouse gets ill you should offer your help to them and this will show them how human beings are supposed to act. Don't do it for God or any other reason, do it because your soul will be full and others will know you as someone who truly cares about people.

I have been in situation also. I wrote off the non callers as they cant handle it. Keep friendship with the one who brought food.

Agree that this sounds like a couples-based social group. "Couples-based" is risky because you may be perceived as a burden or threat if you become single, and "group" is risky because if anything goes wrong you can lose the whole tribe and be left with no "friends". If you branch out to a new activities you'll eventually meet a refreshing array of people. Maybe this will be a silver lining and breath of fresh air.

So sad. I guess sometimes it is a crisis point that makes us realize who our friends really are. Or if in fact they ever really were friends, and nothing more than acquaintances. These are shallow people...maybe frightened people. But they certainly aren't compassionate or patient. I bet if one of them encounters a similar situation in their future they will remember you and be calling. From what you said they want both of you to drop out. I would personally not want anything to do with THEM. And if I had the energy and ambition I might write them a note to let them know how hurtful and small-minded they are. Maybe not. Just know you can do better. And not that they are right, but you might make friends and find more compassion through some programs affiliated with the local Alzheimer's Assn chapter. Check in with them and see.

Eventually you will lose your friends because caregiving will become a full time job. Just remember to take xare of yourself first. Without you there won't be a caregiver.

There are caregivers and then there are those who don't/won't participate in a caregiver role. Once a person assumes the role of caregiver, those who didn't want the job give little thought (on a daily basis) as to what each day entails. Yes, you will hear the 'atta-boys' of what a wonderful job you're doing or how nice you are for 'putting your life on hold' and perhaps those kind words falling out of their mouths are supposed to suffice as their appreciation. However, those words fail to come close to what you really need. Just as I am about to do, perhaps it is time to remind family members that, although, they don't participate in day to day care, they probably spend at least 5 minutes per day talking nicely to total strangers. Tell them, don't ask, they need to be calling several times a week to talk to your husband. Yes, he may ask the same questions or fail to reply as quickly as he once did, but 5 minutes 2-3-4 times a week is not to much to expect and anyone has 5 minutes in a day to give.
When you have been an active member of the church and it is no longer possible at the previous level, inclusion by way of home visits may dwindle. I have sent emails, on more than one occasion, to the pastor to remind him my mother did her part when she could and that I expected communion/visits for her now. It produces results, but continued emails have been required. Of course, my mother has no idea of my behind the scenes prompts.
You had one 'friend' in your social group suggest that you find another group. She's not your friend and probably never was. She is someone you know. That is all. Her comments may not be reflective of everyone in the group. You have to understand that you have some anger/angst about your situation and may be assuming everyone feels this way because you are not as socially active due to your caregiving role. As long as your husband wants to attend these functions and you are feeling good about socialization, continue to go. It's not necessary for you to sit next to the person who made the comment. In fact, if she says anything further, just reply (through smiling lips) relationships change. Leave it at that.
When you are out of sight, you are out of mind to many people. Those people continue life as they know it only because they are not in your position YET. All things come full circle, however. In the end, you will know who you can count on and who hung in there with you. Those are true friends. Take care of those friendships. A man told me one time, if you can count real friends on one hand, consider yourself very lucky. All the rest are just people you know.

Boy does this hit home, but in a slightly different way. When my mom became bedridden in my home my so called "friends" disappeared. Not even a peep or even to send a bag of Mcdonald's when I had a retinal detachment during this rough time, and my husband was working 6 days a week and caring for his mom on day 7. The line was "call me when you are ready to do something"...meaning going to movies etc. If this would have happened to one of them I would have stopped by at their convenience briefly with some food, or at least offered to run an errand. I was housebound. To make things more laughable, one of these "friends" I never heard from emailed me asking for money after my mom passed away and I sold mom's home. I never responded. People are mostly a huge disappointment. It is their loss of a good friend...me.

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

So sorry to hear! You both need the social aspect. Our family and friends have changed in the eight years after my husband's stroke. My husband can no longer be our friends fix it man! No one comes around unless I invite them over for a meal. We are working on making some new friends!
DL

Joycee, after reading your post in answer to Grandma1954 in which you gave more details about your group, I wonder if being relieved of your leadership of and event planning duties for this group is bothering you as much as your group turning it’s back on you. Your life has changed and it’s not easy to accept. I understand completely.

Have you considered volunteering? You will find a new group of people with the same interests. If you volunteer for an organization that supports Senior Citizens your husband could come with you. Many of these groups are looking for people with leadership qualities. They have boards and committees and would consider themselves lucky to ha e you.

joycee: Your most recent post 5 hours ago really says a lot about this group that you and your husband belong to - they have zero integrity. Your husband gets sick and they treat you like this?! Ouch! That stings. Perhaps you should be the better person and remain silent - as difficult as that is.

Just one added note the gal who I thought was my best friend who is not best friends with another in the group..Her father died of alzheimers and her mother is in a nursing home with it. And recently she and her husband went to the doctor and they both failed the little test for memory the doctor gave them. He suggested they start taking aricipet and go get an mri...No one in group knows this but me. They did not go and get tested because husband was afraid it might effect his getting drivers license and other issues. So you see, she knows what I am going thru. But becuse she was thrown out of a group previously she decided to stick with a sure bet of having the other couples to go out with. She did not defend me while they were planning the trip. In fact while the trip planning was going on...she called me everyday...never mentioning it. and how foolish. I would have graciously declined. I had no intention of spoiling their trip. I still speak to them occassionally, have to I have tickets to a couple of events and 2 house parties to attend, but if it gets too uncomofrtable for me I will do what they really want...they want me out of the group. Solves lots of problems, even sitting at a dance only 8 seats and we were 10. so we would have to bring chairs over or sit at other table. My best friend and I always sat together. last dance, she was across the table...I noticed. I do lots of volunteer work always have, my life was not like theirs empty drinking parties. I always had purpose. My husband used to be wonderful big and strong, not he is thin and frail, I think they dont like facing mortality and he reminds them of it. I need time to accept that I have a husband that is really not at a good place physically and friends who walked away (really not yet, waiting for me to go).. they are hoping I take that burden off their shoulders so they can say to others, she walked away. Gets them off the hook. I am sure God has a plan,I am not liking it right now, but I hope to see the light at some point. thanks

joycee, you mention that these people like to drink. Perhaps they are afraid you will not be able to join them in that. I also had a "friend" that cut us off, stopped inviting us over because we stopped drinking alcoholic drinks because of my husband's heart condition. Once I went to her home and chose to drink only soda water. She seemed hostile toward me. This is the sign of an alcoholic. When I have people over, I offer them various things to drink, some alcoholic and some not for the non drinkers. Real friends also don't care if one drinks a glass of wine or soda water...a real friendship transcends that. Just wondering if they are odd this way....