Many of us have been disappointed by people who didn't help us as we tried to cope with this dreadful disease. It's taken the three years since Eric's death for me to come to the conclusion that most people have a difficult time taking care of their own problems and shy away from taking on anyone else’s. It was my expectation that they would offer more than courtesy gestures that were the problem, not them. We can treasure those who do offer help, even if it is less than we’d like, and not be concerned about those who don’t. Otherwise, we add to our burden of anger, whose primary cause is the dementia of our spouse.
My hubby has 7 brothers and sister...they live on the other side of the country. Only one of them ever did token calls to see how he was doing. Now 2 of the BIL's have died from cancer and there is a part of me that thinks why should I do anything, they never did. Then my smart brain kicks in and tells me that.....You be the bigger person and if you don't do something you will always remember how small and petty you acted....so I will go and buy cards and write something lovely in them and send them.
I think that in this age of electronic devices that people are becoming disconnected from each other and are losing their social skills and good manners. It's all about "me" and my feelings and needs.
I am learning to let it all go....less baggage that I don't need.
The first thing is I'm nuts. I'm not one of the wingnuts around me who can't even deal with normal life. I look at the woman pulling her hair out, the woman pacing so often early in the morning the husband tells me with that voice that screams out that he doesn't want to deal with that, the lifelong friend who twists every single story so it sounds like he did the thing even when he's telling the story to people who know that's not true. And nobody in the group deals with that either. And so on everywhere frankly.
The second thing is I'm not happy. Let's assume we all understand why.
But it's the third thing that's the difference between nothing and something. I have a problem with that. I have such a big problem with seeing that I'm unhappy and that I feel strange in my life - that I stop the car, put the parking brake on, get out of the car, and we're not going anywhere until I have answers.
Two and a half years from suicidal to no weirder than anyone else and I still haven't gone anywhere and I'm not getting in the car yet either.
Getting in the car is thinking you're normal. And that means we dealt with the garbage using the magic that maybe it will go away with time. I wouldn't bank on that.
You got hurt bad. Somewhere inside is a wounded Wolverine. It feels like a powerful landscape which we wander around in because it's the hurt and the anger and the disappearance of the protagonist, and more.
You use your power. You write the story of the heroine/girl/woman who was in that landscape and found her way to a better place. Perhaps that place came from things she believed to the core and how that opened up a path.
Mary, I think you are right. We tend to think about our own problems and how they affect us. We may never know what is going on in our friends lives and what they have to deal with. My motto has been expect nothing out of family and friends and when they do something nice let it be a delightful surprise. Seriously, my brother-in-law's wife had alzs and I didn't realize what he was going through and we were helpful but there was so much more we could have done. I think that we have to have this happen to us to really understand the disease. Now, a niece's husband has been diagnosed and I call her often and we talk. We were discussing this last night and she said she really hadn't understood my DH and her uncle Ben's situation. Sometimes people just don't understand.
Mary75*, there was a time a ways back, where I thought there was NOBODY who cared in the slightest, except for you all here. However time has brought out a few treasures, and treasure them I will. It is just draining to try to figure people out, to try to make them what they are not. But I will not be considering many of them anything but fairweather friends anymore.
I know too, that in so many ways I was not near as understanding before all this, though, I at least made the effort to call people and check up. It is only this thing, so far, that shows that some good can come out of it. Well, and maybe also besides becoming a more caring person, the skills and knowledge that have come with it.
I have made the choice to be an absolute cup half full person, instead of half empty. For me this means believing there is more good in the world than bad. This is my sea change. Focusing on the horrors just feels like dying already.
Mary - I think you are right on. Folks just have their concerns maybe not like dementia concerns but still concerns in their own life. We had only one couple who never changed toward Frank through all the time of his strange actions. This was his fishing partner who continued to take him with him until it was too evident that it was not safe for him to be in boat. They still are very good to me and very helpful. But other couples just didn't know how to deal I guess and just not being around was their way. Now I find being a widow is just about the same. Old friends still a couple are not the same. Coco, you are a very gracious person. I'm hoping to get to that point. maybe time with heal these hurts.
This whole experience has made me much less tolerant of fair weather friends…who are not friends at all, in my opinion. When this is all over and I can build relationships again, I know I will be wary and selective--will hold most people at arm's length. At the same time, I will make good and sure that I am truly there for my (few if any) true friends who need me--that I am being truly supportive over the long-term, and not just making courtesy gestures. I don't mean to be a "rescuer" of course, but just to be to others the way I needed people to be towards me during this Alzheimers ordeal.
Mary - I was waving at you yesterday!!! I was sitting on the other side of the harbour in West Van looking over to where you live. Wishing I had more time so we could of got together....I plan to be back over the summer and will get in touch with you to see if we can have lunch....I forgot how the sea air smelled and beautiful a city could be.
Amber, I look forward to that! And yesterday was overcast and dull, so imagine what it will be like when the sun is shining. I should be walking by summer, too, and that will be great.