I had an email from a friend a little while ago and in it she wrote that we all need to say prayers that AD leaves my DH. I have emailed her back and told her once you have AD you are stuck with it and that it is a fatal disease. Do these people ever read anything in the papers or what you have written to them? Do they listen when you tell them something? I guess not as long as they are not involved.
I think that people are careless and unless they have been in our shoes, don't realize we've been riding on the rim for years taking care of an A-D person and need support, not thoughtlessness. I have a friend (?0 who says, "I don't like to visit your husband - he smells like an old man." Well, he is an old man. And yes, he is bathed regularly.
i have neighbors who always ask how is dh doing, never ask can i do anything for you, i don`t think they understand how this illness works, they never come over to see how he is and we have know them for well over 20 years, isn`t it funny if it don`t affect them it isn`t that bad of an illness, so he forgets sometimes, so come over and you will see what he can`t do.
I think most of us, when we stop and think about it, would fall into a similar catagory about neighbors and relatives. I know I do. I have now neighbors and relatives with serious illnesses, shut ins, that I never call or go see. I am sure many of their caregivers would be delighted if I would call or stop in and visit for a few minutes and offer to run an errand for them or something. Right now I can think of several and I am unable to lend much support, however I could call them. I am going to try and better that when I am no longer a caregiver. Right not I am going to call a elderly distant cousin who lives by herself and is wheelchair bound. She doesn't have AD but she does get so lonely.
Maybe we should start a thread about "My good deed for today" and post about lighting up someone else's life with a few minutes phone call. Maybe it will be contageous.
Jean, I get so frustrated by the lack of understanding, But have to say, that we are all to blame! (ok, not me! But, LOL) What I am trying to say and actually have said in a couple of post is that due to the information provided about the disease, and the fact that a lot of people don't tell others that they or their loved one has it only adds to the misinformation about it. Just as the denial that our loved one isn't that bad can lead to them or a innocent person getting hurt. Until the whole story is screamed from the roof tops, the people (public) isn't going to get it. I agree that unless someone is involved that they don't get it, but can we blame them? I don't think so until we as caregivers, the affected ones, speak out. I know it sounds brutal, but it is what it is, and people need to get it. It's not going away anytime soon. I all so have to say that AD is not the only disease that the public is misinformed about, there are so many others. But AD is one that has been swept under the rug for far to long unlike others that may not be understood but because they are rare we don't know much about it. Just like us, (caregivers, and AD LO's) think that the pills they give them are going to save us all from the journey, Yes, maybe someday they will find the answer, and yes you have to try to find the answer, But at this point they have none. So be honest about it. If only the pharmaceutical company's would be honest that they don't have answers but lets try rather than "OH this works" (bull!) then maybe more people would get it.
Imohr, I so agree with you, I have always tried to be a kind and helpful person. But know I have dropped the ball on more than one occasion.
Rk, this was the second time this week I have told someone about AD. The other was a lady at church and the "memory bit". I told her it was a lot more than that and explained a few things about AD. My DH isn't that far along but I know eventually he and I will go through what so many in this group are going through. He can still do a lot for himself and I can leave him alone to go shopping or to my doctor appointments. I am kind of waiting for the other shoe to drop. When it does I hope it is a light drop and not a heavy thud. LOL
Hang in there Jean, I pray that someday everyone will understand. I guess a lot of it is, that you really do need to witness it first hand to completely get it, but some of the dumb questions we get make us wonder who has it? I have even had some dumb comments from Dr's as well as the misinformed public.
Jean 21, Tell your friend that before diagnoses in July 2008, I prayed for 2 years that my husband didn't have Alzheimer's, well that prayer was answered he does not have Alzheimer's, has Frontal Temporal Dementia (FTD) Don't take me wrong I do believe in the power of prayer, however, God makes no mistakes.
Rk and Kadee, I am waiting to hear what the new neurologist has to say when we go see him April 23. I am hoping he'll have at least a bit more info on where my DH is on this journey. He was dx'd in September of 2007 and I was expecting him to be further along by now. Not that I'm complaining (except when he can't remember what I just told him). The first neuro put him on Aricept this one added Namenda the first visit we had with him. It's only been a week so I don't see anything different.
The local neighbors group that moved my neighbor with dementia into an ALS and who take my husband out for lunch periodically so I can have some respite got someone from one of the local hospitals to do a lecture on dementia at our clubhouse. They discovered that the local hospital had 2 people doing a lecture at their facility and asked if they would come and talk to us too.
Well, I did it. I looked up phone numbers for my 4 elderly or homebound friends and wrote them in my current number book. Got hold of two. One, dh died last year of Parkenson with Dementia and the other is presently doing well and both were overjoyed that I called. A third was in the hospital with pneumonia and I talked with her daughter. Her Mom is doing poorly and she is going to tell her I called. The fourth I still haven't found the phone number. I felt good after I made those calls.
Imohr-I have started doing the same thing. Found those easy phone calls mean so much to shut ins. We have several recent widows who do not drive living in our community. I don't really want to-but I will reach out to them for transportation. As the village nurse (or idiot) it seems I am always on call for someone. I actually keep home-made dinners in my freezer to take to the ill. I have to be carefull, though. When the wife is ill I often find her very protective of husband and try to call when he is not at home.