We had a close knit group of 5 or 6 couples. We did everything together, trips, cruises, every dance we sat together, you get the picture. My husband got sick and landing in hospital with sepsis, I wrote about it here. Since he got home, one person brought food over. No cards, no phone calls. Of course, he didn't get too upset because of his condition. I said nothing. Then one day a very good friend of mine said."Sometimes curcumstances change and when that happens people should go to another group with the same interests." I assume she feels they do not want us around anymore. I am distraught because my husband is sick, now friends -and I use that term loosely are uncomfortable with us. He can still go to dances and dinners, but I think they want me to drop out. What would you do? I like my community here but so disappointed with who I chose as "friends."
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.
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.
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.
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.
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.
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.
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 -
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
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