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."
I am wondering if they aren't feeling a bit the same, as in, I thought we were friends.
My sister chose to not tell anyone that she had breast cancer until she was admitted to the hospital because it had spread all through her body and there was no hope except for a miracle. I can't tell you how many people said to me, "why didn't she tell me, I thought we were friends?" They were hurt and angry that she didn't trust them or return the deep feelings of friendship or whatever motivated her, she would never say, but she alienated many people by her actions.
Have you spoken with them about what you see and feel, maybe they think you don't view them as worthy of helping, knowing or ??
Just a thought, lack of communication leaves imaginations to run wild. What's the worst thing that could happen? They tell you to go away? Or you could find that they took your actions to mean mind your own business and they are happy to be there for both of you and have been waiting for an invitation.
2. help them out when they need it and 3. request no help in return.
There are also neutral folks or middle of the roaders who take care of their own
and will not pitch in to help you in your time of need. But they also would also not burden you with needs of their own.
Then there are the "givers" of the world. They usually have a line of folks needing
their help whether family, friends or the "takers" who have sensed a soft touch.
I was raised by a taker, then married into a family of them (as was my former husband), and also made the mistake of befriending them. Several of these
human devourers of time, attention, and empathy, told me outright that they
are very aware of what they do, as well as how they know to target someone to take advantage of. They believe "givers" are foolish and deserve to be taken advantage of. They also truly believe they are so special, by even just spending time helping them take care of drudgeries that they are doing you, the "giver", an enormous favor merely gracing you with their presence!!! Yes, they really believe this.
When the tables turn and their tried and true friend is in need of help, "takers" instinctively know to start a chain of negative gossip or slander to free themselves of their obligation to return what is often years of arduous help on part of their "giver" friends. Usually they use the outrageous claim that they've been trying to help their "needy" or "difficult" friend but finally tired of their constant requests for aid, thereby neatly flipping the script on reality. The kicker is most people will accept this deception because the "takers" of the world, having drained help from so many others while eschewing their own responsibilities, are more "fun" and often are more wealthy due to their duplicitous and manipulative ways.
The middle of the road types, will consider any deviation from your previous "fun" behavior, as being in "poor taste" and callously move on to the next, resentful you've shown anything other than your cheerful, business as usual, face to them.
Make no mistake people know how to behave, know what they would prefer in health crisis or similar situations. So either you are dealing with "takers" or those who will only help a very small circle of family and a very few friends. They see
you now as a burden that should gracefully wait out on the sidelines or reinvent
yourself to continue to be a selfless "giver", constantly cheerful and giving, while requiring no further assistance from anyone.
Welcome to the human race. We would all do well to choose our friends more wisely. Very sorry you are going through this now, consider it a painful opportunity to find a way to meet more giving, kinder people that will grace the rest of your life. True friends, family and health. Is there anything greater than these gifts? Best of luck to your and your husband in this difficult time. I hope
you will find new friends who can be there for you both through thick and thin.
In my experience people who are capable of hanging with you have the gift of being spiritually grounded, which means they tend to face their own suffering and fear, which means they can hear yours. Our culture which favors abandoning the spiritual for legalizing drugs, abnegating personal responsibility to become victims, blaming others and seeking refuge from life will make it more difficult to find others who have the inner depth to maintain relationships in difficult times as well as the good times. Sometimes there are support groups that can meet a need.
Peace.
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.
DL
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
The other comment from siblings is: We all had a different relationship with her. Really? So my relationship was all about the butt wiping?? The difference really was that I didn't argue with her every time she opened her mouth back then and I'm certainly not going to argue with a 95 year old woman. What would be the point? I doubt if I can change her way of thinking this late in the game. -Bless you for taking care of her.
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.
The last words that my father told me were, Shari...if you have at least one or two good friends in your life, then you've done well."
I've always remembered that and taken comfort from it.
Thank you
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.)
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!
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.
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.
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 -
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.