Last month I decided to contact two girlfriends who had dropped out of the picture after my husband's DX. One, I had been friends with for about 40 years. The other was the "new" wife of one of his pals, who actually came into the picture after dx and was very helpful and concerned for a period of time. Both ultimately just dropped off the map, never even picking up the phone to see what was going on. The only contact from both in the last several years was a sympathy card one year ago when my Dad passed away.
I decided, now that Steve is at the ALF and I have more time and energy, I would call each one to close out the relationship. They didn't know it, but in effect, the purpose was to say goodbye. It always seemed strange to me that women I had been close with would just disappear, this seemed to be a comforting thing for me to do. It was--both asked how we were doing, but neither alluded to the fact that they hadn't been in touch or haven't been of any support. I feel now as if I've closed the book, thanked them for sending the cards, and that's it.
I know we've discussed here how so many friends disappear in the face of a dementia dx--wondered if anyone had done what I did. I feel now more like I've ended the relationships on my terms, instead of being abandoned.
I live in a small gated community. For quite a while I harbored resentment to those who had deserted me. I don't think they even realized they had. I can't avoid them as we participate in many of the same activities. I am surprised to find I can now at least tolerate them and sit with them. Ironically one of the husbands is showing signs of AD. I will try to support her when the time comes. I am in the "after" so some of the hurt is leaving.
Old friendships are indeed hard to let go of but some people are in your life and then you just grow apart. Life does change people and that is just fact. My wife and I experienced that after she got sick and by the time of her passing all of the old friendships had disappeared. I am finding that the things I have learned from this AZ journey can be valuable to others and it helps me to heal by passing on some of the things I have learned along the way.
Marilyn, what I'm left wondering is whether--since they didn't realize your goal was closure--you left them with any hint that their abandonment was a disappointing thing. Not that this is necessarily a point you'd want to hammer in during a brief call.
There are just a lot of people who can't deal with dementia. It may be something like fear of heights, or spiders, or some version of sweeping ideas you can't handle under the rug, while you make yourself so busy with other aspects of your life that you don't think about what you've neglected.
Obviously, the people who distance themselves will probably never become our best allies again, but I tend to think they're exhibiting a symptom that is not uncommon in humans, and may be one sad characteristic in someone who otherwise makes pretty decent usage of his/her DNA.
When I used to take Jeff into the hardware store (his own former store, now run by his brother,) some of the guys with whom he'd had great rapport for decades would avoid him. But one day, when I was back in the workshop area by myself, one of them opened up to me about it. He just didn't have any clue what he could say, or how he could interact with Jeff, and that freaked him out enough that he was avoiding. I gave him some hints about how to have a basic chat with Jeff, but it was evident to me that he was hurt and disturbed and uncomfortable about his own inability to deal with the situation. It was impossible not to feel forgiving.
Of course, the people who DO remain in your camp throughout the long haul are our greatest treasures, and deserve recognition for being extraordinary.
Emily, for once I wasn't trying to advocate or educate. The calls were for me--somehow, it was satisfying just to act like it was a normal conversation, but to know that I will never contact them again. In truth, both have many of their own emotional issues to wrestle with and they may have even thought that I'm so different that I didn't need any support during Steve's illness. I suppose I was giving them an opportunity to apologize, but that didn't happen and I realize you can't change people's basic personalities and have moved on. I totally agree with your last statement, and thankfully, most of our friends/family fall into that category.
My experience is somewhat different. Some of my single women friends that know my my spouse and me and know she has been in a Memory Care facility for the past 18 mos have not been interested in any communication until my LO passes....it is, for them, about patience and leaving me to complete the journey alone...some have voiced concern about being seen by others as "waiting in the wings". My male friends and their spouses have continued to be supportive and offer unsolicited caring for us both. I have found the interaction of friends can be as varied and confusing as this disease and the journry we travel.
Tom, you are sure right about that! What I don't understand is how your single women friends feel holding back on communication for literally years while you are being subjected to a huge loss can be a good thing? I get the "waiting in the wings" comment, but they don't have to hover--I think an occasional phone call or email isn't overstepping. I have never heard the viewpoint of having patience and leaving a grieving spouse to complete the journey alone (unless the person has indicated that's what they want to do). Interesting.
I admire forgiveness and understanding that some of you exhibit. I am barely, (of course less than 2 years in AD world), barely coming to terms with it now. It makes ME feel better, as for THEM I still harbor resentment.
It is like you said MarilynMD, they don't have to hover. I mean, there they are AFTER the fact, it is like the little red hen that saved all the food for winter, and when the others had none, they wanted hers. (In know, odd analogy)
And what about his 4 sisters from a short flight to Maui, never call, never offer, don't care these so called born again holier than thous?
I want nothing to do with whining oh I don't know what to sayers, I can feel my blood rising just writing about it. And almost worse, are the ones who only want to get involved IF YOU DO WHAT THEY SAY<of course they know best. Like the one at my market who constantly jokes about it.
And yet, for me, the true gems are starting to shine. Two old friends I have not seen for years are calling long distance and LISTENING, and offering what can we do to help? One is coming for a couple of weeks this fall and insists on doing all the cooking and cleaning when she is here, (of course we have more time then for FUN)
I find it the second worse thing about this journey, the fair weather friends. I do NOT wish them bad, but, I don't want their fake love.
Marilyn, good for you! I understand the desire/need to end things on your own terms. Most of our friends have moved to other parts of the country in their retirement, so our circle of friends has evaporated mostly. DH's family does not stay in touch or even call and he has 1 brother who lives 1.5 hours away with whom he was quite close until his dx. I did something like you did with his brother and sil. They called one morning saying they would be at our home within a few hours. Although we were in the middle of a home emergency I did not tell them the could not come because I know they would have used that as an excuse never to visit him again. They came, stayed for 1.5 hours and we said goodbye. I have no doubt this would be their last visit to see DH until his funeral. What they don't know is that I have no intention of telling his family when he passes; they will not be allowed the opportunity to assuage their guilt at his funeral. Of course they don't know my plan, but it has given me closure and peace. I no longer actively despise them.
Coco, who knows why people do what they do? If I choose to be kind and understanding, I would think that it's too difficult for his brother to see his YOUNGER brother lose his memory and need supervision and care. What I really think is that the brother (and family) are embarassed and don't know how to deal with it AND don't want the physical, emotional and financial burden that comes with this disease. My sister believes it's fear-he's afraid he will get it or one of his children will get it and he can't deal with it. That seems possible since their oldest brother died in 2009 (a year after an AD dx). And I've been wicked too-when DH was dx'd with FTD I told his brother that if it's in the family 50% of the children, grandchildren, etc will get it too. So yes, I think he's afraid, for himself and his children, but that's irrational because it's not contagious.
Why don't your sils help you?
Trust me, I feel much better now that I am not actively despising him-it's a sense of freedom but it's because in the end I am getting even.
We had an interesting experience in church last Sunday. A friend, not a close friend but someone we've had interaction with for 50 years, stopped us. He proceeded to tell my husband, with tears in his eyes, of the positive influence my husband has been in his life. He knows my husband well enough to realize that he wouldn't remember the conversation, but I was grateful for the conversation. There are some good people out there.
I am sure that whatever you do it is with grace, composure and intelligence. I feel so fortunate to have you as my friend. To me what you did comes from such a place of truth and self-esteem in the best sense of that term.
Like Lori's experience, there is goodness out there.
One of the things that got me so angry was when I read here of Coco's sil's. If my memory is correct they not only negated everything about her and Dado but actually questioned her motives and behavior. Forgive me Coco, if I don't have this right, but I saw stars. To say nothing about market person. Your kindness and dedication should be revered, period.
H is one of four siblings. One cut away from the family years and the issues have nothing to do with H. One is quite concerned; calls and sends encouraging cards. Along with that sibs immediate family- a blessing.
But the remaining one. The back is turned on H, mostly because H can no longer afford gifts and material recognition of events such as "your new McMansion", "your new beach house", "a full time nanny for the progeny", "another new car", etc and etc. Total coldness. Not even a birthday card. Made a comment about H and religion that I should not repeat here. This hurt H deeply for a while but I think it no longer registers. Thank goodness for that.
thank you abby of your kind words. And you know what, those things are true that you said about me, and I do deserve more respect and love from them. Funny you mentioned religion, as you may remember one of the SIL's suggested he was "possessed" from us going to a Hawaiian gathering celebrating their incredible heritage.
and yes....oh God! I was so hopeless a few months ago, and now, through just the very few caring, I feel a renewal . of course I fear the next step, but we will make it.
On the subject of close, but uncaring, relatives--it didn't happen overnight, but I was told by a professional to just ignore her as much as I could. She will never change and was only providing stress, nothing positive. After 7 years I am now at the point where my feelings are neutral towards her. (I realize, though, that this was easier because she doesn't second-guess me or criticize my decisions regarding Steve--she doesn't care about him enough to do that.) Yes, it is brutal when you face this dx and the people who should be helping don't, but what worked for me--in both practical and emotional senses--was to back away and get help from other sources.