Social Stigma Still Evident for Alzheimer’s, Dementia and Mental Illness

There were few visitors for my dad, who was much beloved by those who worked for him and those who were his friends. People hated "seeing him like that."

It is hard - very hard. In a way I understand. But I think, too, people are afraid. They see their own vulnerability. And they don't know what to say. So they don't go. It's so sad.

Carol

Exactly, Nina. That's why I put them together. People shouldn't be ashamed of any disease that affects the brain. It's illness, as are diseases that affect the rest of the body. This old attitude came from not understanding brain malfunctions.

Most depression has physical and psychological components. Are people with depression "crazy."? No. They have an illness that affects their brain chemistry. People with dementia also have an illness that affects how they process information, react to stimuli, and respond emotionally. They are not crazy. They have a disease that is affecting their brain.

Society has much to learn. Things have improved as people have become more willing to discuss these illnesses. It's a snowball affect and needs to keep growing. We need to bring dementia, depression and all illnesses of the brain out of the dark ages.

Carol

Thank you Nina

I to am fighting the battle to keep my husband going. In the beginning he forbid me to tell even our kids he had this disease. They knew it, it was just unspoken, now he is telling everyone and saying he is carzy too or thats how he thinks people view him. It is getting harder each day he is getting angrier and is taking it out on me verbally. Our granddaughter finally got post housing and moved out, Thank God but unfortunately not before she had to witiness one of her poppys tirades. She cried I cried and we talked about it, she hurts because this is happening to him to me and tries to stay strong and says she can take it but she can't and shouldn't have to. I want her memories of him to be the loving happy man that gave her rides on his wheel chair, even then he was happy and loving. This horrible disease is robbing all of us of a great man. I try to face each day positive but fear the day of getting him to ever leave the house is near and that he will soon be more then I can control, the anger is really coming out, for the past two days he has yelled at me and nothing I do for him is right. He blames me for this disease and I know its not him but it is getting harder each day. Pray for me. Connie

Connie, you are welcome! I just learn from my personal experience dealing with my FIL. Even he himself would not want to go to a cafe because he has trouble sitting down or getting up from a chair. He has ego and he does not want strangers to see that he has something wrong. It is his pride also. Not necessarily the shame. Nancy Reagan didn't let Reagan's friends come to see her husband when he was very sick. Her reason was that she knew that her husband would not want to be seen like that as a guy with dementia. In a way, we need to protect them from the peers and the hurt from the outside. On the other hand, I think it is not fair for the friends not to come. It is up to the friends to figure out if they can cope or not. If not, just don't come. It is hard. But we have to admit that at some point, the patients with dementia really can no longer socialize or go among people anymore for their own sake.

Perhaps we need to draw a line betwee shame and pride so we can reverse their privacy as well.

Nina

I meant to say reserve his privacy or his being. For example, if my FIL would do this thing like that as if he were normal, then I would try to do that for him unless he really protests and forgets about it. He certainly has changed and his old habits are gone. But we still try to do what he would have done as a normal being. One example is about his chasing women. He was very proper when it came to ladies, so we make sure the women/caregivers treat him properly also and no game for him in this matter. But he does not eat properly on the table anymore, and we let him because this is the change that cannot be reversed. He now uses his fingers to eat if it is hard to use a fork. He used to be so proper in his table manner.

Nina

All wise decisions, Nina. Preserving dignity when possible, and allowing changes where as they come. Thanks for commenting.

Carol

Nina I hear you it has been so long since I have been able to get my husband at the table. He eats all his meals by him self in his room, He does everything in his room, I can barely get him to come out, If the ocassional friend stops by he insists his door be shut and no one allowed in. He is pack rating, at night after I go to sleep he get ups and gets food and hides it in his room. I try to make sure he eats healthy but it gets harder each day. If I give him a sandwich and chips it takes him three hours just to eat it, When I make roast or something else he works at eating it way into the night, he is gaining a tremendous amount of weight. I worry because I know it is bad for his heart, all he wants is DR Pepper, he drinks two and a half 1 liter bottles a day. I talked to the doctor and they said to let him have what he wants. I know this can't be good for him and I feel awful for buying it for him but if I refuse he gets extremely angry. I will never understand or get use to this disease. I know each patient is different but that is one of the things that make it so hard. If they could just say this and this is what is going to happen but they can't. When I read a share post I think wow I am living such a similiar problem but with a different twist. I laid the cigarettes down so far so good. Pray for me I am doing it cold turkey the medicine was making me to sick. Thank you and take care of your self. Connie

Connie, the doctor told us the same thing - let him eat anything. Just make sure he eats. In the future or in the end, he won't eat well anymore. So now let him eat....

Well we still try to buy healthy food, but we just let the caregivers cook whatever they want to. He liked to be on good diet for his heart or blood flow, but it is hard to be picky given his situation. He does not drink coke anyway.... Lucky his habit was healthy so we don't have to buy junk food... I can feel for you.

If your husband wants to eat something bad, there is nothing you can do. I guess this is time to let go or something. It is not easy. At least we make sure he drink enougn water.

I am sorry you got so sick yourself.... Have you tried to ask someone to help? Maybe the hospice is a good idea for you and him.

Take care,

Nina

Hi Nina you are so right,it's a shame that we have to learn about this disease by caring for a lived one. I lived for so long knowing about this but at that time it was something that hadn't touched me. I live it everyday now and as each day passes I learn more. There has got to be a way we can get it out there for more people to know about before it strikes their loved one. Knowledge helps and so many people probably live under the same aumption  as I did that it won't happen to me or my loved one. I found the site by accident but we need to get more people involved and educated about alzheimers. They advertise and encourage older people to have test for colon cancer they need to find a way to get the public more aware of this disease and better ways to check it and be aware of it, I am writing a letter to the editor of our news paper to see if they will do  a story about it. We have to get more people involved. In some ways this is worse then a cancer. How all is going as well as can be with you FIL your friend. Connie

Thanks for the kind words, Connie. After two decades with seven elders, I've been through a version of what most caregivers have gone ( or are going) through. Add to that a son with multiple health issues...

I do try to be a voice for those who are caring and those who are cared for. You made my day.

Carol

Truly Carol thank you from the bottom of my heart. You take time out of your busy life and touch so many people, you help give us all the words and the courage to get up each day and keep on going. Everyone on this site I feel like has been a true blessing in my life. Thank you all. Connie

Fabulous, Leah! You are such an inspiration. And yes, people need to experience interacting with people with dementia, so they can stopped being "embarrassed" or whatever. You are a perfect example and a great teacher. It's going to be one person at a time, but we can try to make progress. If people hide dementia, that makes it seem shameful, which is - well, shameful! Dementia is a disease. Mental illnesses are diseases. Education is the answer here.

Best,

Carol

Thanks for the reference! Yes, it's so sad that people were hidden away, supposedly for their own benefit. Much was shame on the part of the family, which is equally sad. I do hope we are getting into a more enlightened stage.

Carol