Today I received an acknowledgement of a Memorial contribution to Alz. Association in honor of my husband Paul. It said it was a generous donation from the G M Retirees Group. Paul had a tight association with so many of those guys....and gals too, as many of them came out west at the same time. In the mid sixties. Paul worked for them from 1955, til he retired in 1992, and up to the end of 2000 he still went back numerous times under contract (through temp agencies because he was officially retired) to work on big projects for them. He was a real negotiator. Did contract proposals, and travelled to close deals. After we moved out of the area lots of his old buddies would call just to keep in touch. In the first couple years after our move whenever we went back for a visit Paul stayed busy meeting up with the guys for lunches, etc. But ya know, once some of them started noticing the changes coming on from AD, even well before diagnosis, they quit calling. One old friend (best man in our wedding) was visiting a son who lives about 60 miles from us. He and his wife made it a point to drive up to see us. When the obituary was in the News Press the wife immediately gave me a call. Her husband had died of cancer exactly two months before Paul. And we hadn't heard about it until she called me. I hear from my stepdaughter that her Mom tells her the word was getting around amongst the old network, but not one of them individually called me or sent a card or flowers. I was really hurt about that. Getting this little acknowledgement of the memorial contribution was bittersweet.
I think alot of people do not know how to deal with it. If fact it has taken my wife and I a year to come to grip with it. I think most people would rather ignore it and look the other way.
Something I learned years ago, whe DH was first diagnosed with SchizoAffective Disorder (mental illness), long before VaD was anywhere on the horizon (that we knew of), is that when someone gets these kinds of illnesses a lot of family and friends pull away. A lot of it is fear. They are afraid because it could happen to them (family especially). They don't know how to deal with it. These diseases aren't just physical and there is no quick fix, nor even a slow one. They are only treatable, to a point. Cancer is scary, but treatable, but if not recoverable it at least goes relatively quickly. Many handicaps require treatment but the person still has the potential for a good life.
Mental diseases are less easily comprehended, may be treatable but prognosis is often less definite, in the case of the Dementias, they do not improve--there is no recovery, nor even longt term arrest of progression.
IMHO the best we as caregivers can do, is educate when we can and let the rest go. We can't spend great gobs of time on these outsiders. Our focus has to be on the care of our LO.
carosi, you are so right. Because mental illness, therefore AD/dementia is hard to understand and very hard to deal with, people just naturally stay away because they are afraid. They are afraid of saying the wrong thing, getting too involved, because they don't want to get consumed. Face it, to normal folks, this looks like crazy people.... Not only that, gee whiz, they die from it.....hard for them to handle. Hard for us to handle, too....Yes you educate when you can, but nobody really wants to hear about it, it scares the hell out of them so they shut down....I for one do not have much time to go around and educate. I have some acquaintences who are dealing with Parkensens and dementia. I take the time to visit for a short time and ask how things are going. Offer my help and love....that is all I can do now.......M
moorsb and carosi are right. People don't know how to handle it. You want to do the right thing. You want to find the words, but it's hard and they don't come. You think about it for awhile and before long, time just goes on. Soon, a lot of time has gone by and you feel guilty about all that time and now you really don't do anything because of embarrassment. It's sad, but unfortunately, that's exactly what happens sometimes.
I agree, except that if I call one of those who have abandoned us (and it has been about everybody), they will help if they can schedule it. I think people want to help, but need to be asked for something specific, like sitting with the LO while you do grocery shopping.
Teas Joe--You maybe correct about some of the ones you might call. However, there are relatives and friends who would agree to help in a specific instance, but who have their own take on your LO's situation and will do what they think instead of what you need them, to do. Example: My Dh's sister agreed to stay with him while I went to an appointment. While I was gone, she and her sister brought Dh the road capable scooter, I'd told them he copuld not have, and coached him to keep it a secret from me. BIG HELP.
We have other relatives and friends who have helped when asked and are reliable.
Diana, I know what you mean. As I have many times before, once my DH was diagnosed with AD, our friends seem to have scattered like cockroaches. These are the same friends that I helped nurse when they were having chemotherapy, or had been injured in car accidents, or just held their hand because they needed me to. The difference is, my hubby has Alzheimer's Disease and it's "scary". Most days I feel so isolated and alone (even though I am still workingfull time), and I can't seem to find it in my heart to forgive them. Oh well, maybe they don't deserve my forgivenss. Sigh...
the folks I was referring to are those who we knew for years and years. I didn't want anything from them in the form of help, and we live out of state anyway. I suppose all I'm getting at is this. If they found it difficult to converse with DH in the last year or so I understand that. Now that he is gone, I am simply expressing that I longed to have phone calls, a card, flowers or other sign of acknowledgement that they cared for DH and are expressing concern for his family.
Oh Diana....I hear ya. Alz is scary to people who don't live with it. Paul was, by all accounts, an extremely proficient and well respected man. Once Alz enters the picture, people don't know what to do with it. It doesn't discount who he was as a man, it just changes the picture. Just know that his former co-workers cared enough about him to donate to the cause, because that's all they knew how to do. You have us for the rest. We support you in every way we know how. God bless, and you and your family continue to be in my thoughts and prayers! ~DI