We attend a small Sunday School class (about 50 on roll) and we were told today that another member was diagnosed with Alz disease. This makes four (my hb included but with Vascular Dementia) and I was shocked that so many in such a small group. The newest to "join" this group is probably in his 60's. This man has attended and contributed to the discussion until recently and I had no hint he was having problems. They said he was diagnosed and he has not returned to class since. He sure kept any problems hidden and I just wonder if he would still come if he didn't feel a stigma from his diagnosis. I have not tried to keep FD's diagnosis from anyone but I haven't announced it either. Most probably don't know about it and I think it makes for more normal interaction with those who aren't close friends but just acquaintances from church. He still is doing his job (taking offering) at church and attends regularly with me. I intend to try to lead as normal a life as possible for as long as he can manage it. Just my wandering thoughts on this rainy afternoon.
My experience at church is after letting the information out, they at first seemed to be concerned as soon as the disease showed more signs, then people dropped her like the plague.
I think there is less stigma with vascular dementia -at least in the early stages - than with Alzheimer's. If you feel led, I would approach the couple outside class - at least let them know you are there for support and information. I would think at the younger age there is the process of accepting the diagnosis.
I know I was sitting at the chiropractors last week along with older people (70s,maybe 80s) and they were talking about different people and their diagnosis of AD as something as common and expected as cancer. This is a small town and the senior citizens tend to know each other. I am sure if it was someone in their 50s, even 60s there would not be the same casual attitude. I wanted to ask them why they are so casual about it cause it it not normal, but I do know after 70s loosing memory is accepted as aging. No one thinks anything of it. But it is more than memory loss and I honestly do not think they think beyond memory loss. If I tell people my husband has AD they look at me. I know they think I am too young (of course most do not believe I am almost 59) or married to someone much older than me. I keep quiet unless the conversation leads that way.
Our SS class has been more than accepting of DH since they've learned of the dx. They are always asking what they can do and talking with him. If I have something to do during SS they will watch him or direct him to where I am at. It helps that most of our friends are from church.
I don't feel there is a stigma associated with Alzheimer's. Maybe I am taking the term to literal? But a stigma means "the shame or disgrace attached to something regarded as socially unacceptable" I have never experienced anything remotely close to that with Lynn's diagnoses. I have no shame, Lynn had no shame. It is a disease he did not ask for or have any control over. Do people leave your life, hell yes, but most do that with any long term illness. I have always been open with everyone about Lynn's Alzheimer's.
We (mom, dad, wife and myself) are all vocal about it at the senior center my parents and wife attend. It helps in those situations where she messes up. The Senior Center staff help look after her. Our openness has brought out a few others. Most have just told mom and then she discusses things with them.
In the spirit of openness (and because it is my coping mechanism) I gave an hour long presentation about dementia to them and another senior group. It was well received. I am also very open at my work (I am 53) where many folks knew and worked with my wife before the symptoms. (she is 61)
It hurt a little at first to say it, but now it does not seem strange. Like I say I use the opportunity to teach people what AD is REALLY like. (there is so much misunderstanding) I dont tell every clerk in the market whats wrong when she starts talking non-sense in public, but that is probably just because I dont want to take the time to explain things.
No, not generally any stigma from the outside, but I wouldn't be surprised if the individual who was newly diagnosed would be reluctant to share that for a while. In the early days, when he was capable of thinking like this, Jeff did express concern that people would look at him or think about him pathetically and he didn't want to feel that.
It’s a little different when the person would not accept the dementia diagnosis in the beginning & ever after. I tried to discuss it with him a few times, but he would get angry & say that there was nothing wrong with his memory. After a while I just gave up. I never told him that he has Alzheimer’s. It took our children having a mini intervention with him to get him to even go to the neurologist. Now he is far enough along that he wouldn’t even understand what AZ means. He knows something is wrong, but he has never said, ‘What is wrong with me?”
maybe stigma is the wrong word. Fear of the unknown may be better. As a child I stayed away from then called retarded people. It was because a girlfriend had a retarded brother who choked me. I had a neighbor who had an adult son who was retarded, strong as an ox who helped my dad during hay season. But because he was different I tried to avoid him. It is only as you are around others that are 'different' that you become comfortable. Some people never will. My youngest brother and sister were never comfortable around our mom as she slipped away or our dad after his stroke where for 3 years he was basically a vegetable and would have seizures that were very scary. If I had not been around other elderly people growing up, I probably would have reacted the same way - they were 8 and 10 years behind me so missed out on seeing elderly relatives.
If people do not have the courage to confront their fears, they will stay away. They have to want to confront them and do it.
Thanks to all who took the time to reply. I'm interested in what is happening with others. FD will not discuss his diagnosis at all. I've tried to talk with him about what the doctor said but he didn't hear it that way and choses not to. He thinks because the procedure to put a stint in the blockage in the side of his head was not successful that the blood will make it's way around it. This happened in a blood clot in his arm many years ago and I know that does happen. In this case though the blockage has done its damage and is not reversible. I guess stigma is not the correct word and I don't feel ashamed at all but I think FD does. He does know he cannot remember what he did yesterday or even this morning. But most things such as dressing and working in the yard, etc he does just as he always has. Although he has lost several tools because he can't remember where he was working with them. (Not a large yard and we'll run across them eventually) We will be going to his army reunion this week and I'll be interested to see how his old friends react. I'm counting on them to treat him with kindness and love. I don't think I'll be disappointed.
I just tell people right off what Paul has-if they don't want to be around us for that reason that is there loss. He is and has always been there for other people no matter what was wrong with them.I do get angry when people sort of talk over him instead of to him.He is not deaf and he does still understand some things.And he is still aperson that deserves respect....
It may surprise you if they talk army days - that is the longer term memory. I remember my FIL could almost tell you minute by minute details of WW2 but could not remember what he just did. We would play along asking questions and acting like we knew what he was talking about.
Hmm, I've seen "FD" or "SS" used quite a bit here lately and I have tried to figure out what it means - can anyone help me out? Thanks.
My feeling about people who avoid you after this disease gets more progressed is that they basically don't know what to do or say or how to act, especially when the victim gets further along and displays, well, some of their colorful behavior - people just don't know how to respond. They feel bad, mostly for we caregivers and they are terribly uncomfortable with the AD victim - just like I don't ever know what to say to somebody who has just lost someone special - I am uncomfortable dealing with death.
My neighbors all know about my husband's dx and they all ask me regularly how he is doing and how I am doing. Mostly, lots of sympathy for me, they all seem to understand what a difficult job this is for me. And, they all look out for dh now because they are aware of his disease. I don't think anybody avoids him, but, they do address me when we're together out on the street, not too much dh - people we hire do that, too. Our children don't talk too much to their father when they are here because he doesn't talk to them. However, when they leave, he complains to me that they only talked to me when they were here - he doesn't seem to think he needs to respond to them or leave his television.
I agree with Nikki about it not being a stigma, per se, for most people. However, I was just talking tonight with a neighbor woman who is 73 and in the early stages of AD. She is terribly concerned that people will think less of her and doesn't want anybody to know. Of course, she's the one who tells everyone and she doesn't realize that she has done that. So, I think maybe people her age and older may consider this disease to be embarrassing. I know my dh would be mortified if he thought I had told the whole neighborhood, which I have.
Mothert - don't know about other initials but FD is my husband's initials. I haven't looked up all the short cuts used here so I'm not always sure either what it means but I get enough to know what they mean.
To me, there is definitely a stigma associated with AD. All along, people haven't known how to interact with my husband; there was a hesitancy on the part of some to be around him. Some people just dropped off the map. We have had friends with a terminal cancer dx, and since they have been lucid until the end, there was much less awkwardness. Also, because EOAD is more rare, people just don't know what to make of someone in the 50/60's range who is losing cognition.
i agree with marilyn definately a stigma associated with a diagnosis. they may not want to acknowledge it as one but even so there is alot of pity looks and failure to understand how to interact with them on an early level. there does seem to be more awareness of late about the disease due to commercials and drugs produced, but we have a very long road ahead to get to where other terminal diseases rank.
I think we all just have different ideas about what the word stigma means, but I think we all agree that we are dropped like hotcakes by our so called friends and loved ones. I see this with many diseases, not just Alzheimer's or EOAD.
A few months ago my cousin lost all 4 of her limbs to a very rare disease called Necrotizing fasciitis or more commonly known as "flesh eating virus". She is 38 with 3 children. At first when she was fighting for her life, people rallied and surrounded her family with prayer and well wishes. After the amputations to save her life, people started dropping off. She is home now, but few go to visit. It is just too horrifying for most and no one knows what to say.
Several years ago my dh was very uncomfortable about admitting he had AD. As he progressed he got more comfortable about it and even told people himself. He has EOAD. He really doesn't understand or seem to want to know how this condition progresses so I don't explain it to him. He just keeps saying "I don't think I'm that bad" and I always agree with him even though he gets a little worse every month. I always say to him we have to be thankful you have no pain and this seems to make him comfortable and helps him accept his condition as it progresses.
Charlotte I was glad to see your comment about your FIL remembering Army days. My DH can't remember one of his favorite nieces but remembers all about his army time in ww2 although not having any way to verify I don't know how much actually happened and how much he's just filled in the blank spaces with interesting tidbits.
I don't know if it's a stigma or people just not knowing how to react. Hospice has a problem getting volunteers because they are afraid of being with dementia patients. My next project will be to do some more educating to hospice.