how do you get to that point of telling family and friends of your LO's condition. It has been a year since diagnosis and I still don't know how to share this with people I know. By telling his family about it they have not been so supportive and I am afraid other people will act the same and just back off away from us like it is contagious.
Why is it we avoid talking about the obvious like the elephant in the center of the room. Anyone close to us could tell something was not quite "right" with my husband. My guess is you don't have to tell them: They already know.
Most people do not want to believe their lo is suffering from such a horriffic disease. I think they are in denial and because they don't live with us, they don't see what you experience. My dh's family didn't believe me either but they also don't see him often. When he became combative and landed in a psych facility for 12 days, it finally hit home. You will find that family and friends (especially couples) will eventually stop asking you and your dh to events. They are not comfortable being around him. Personally, I think it is a big cop out. This is when you will find out who your friends really are.
First you need to realize that there are two important people that need support and understanding, yourself, and your lo. You must realize that embarrassement cannot matter any longer to you, since you will be confronted with many embarrassing moments. Once you accept this, what people think and do will no longer matter, and you will not have the additional burden of feeling guilty for someone else's responses to your condition. You will find that some will be very supportive, and others will want to distance themselves from your problem. Let them deal with that issue, and you can concentrate on coping with your very difficult task..caring for your lo. It sometimes becomes easier to tell people and to share your diagnosis when you accept the situation as it is. To be in denial is very easy, and there is some comfort there, but in the end, you have to accept the diagnosis, and accept it. Telling others will become easier as you share your feelings and overcome your embarrassment. You will discover that some people will become highly supportive, while others will back off quickly. Do not dwell on that, but concentrate on your mission to care for your loved one.
I hid my husband's illness from most of the people we know. It was really difficult. Then he went to our friend's apartment and asked him to come and get a strange woman our of his apartment. Of course, the strange woman was me. That really let the cat out of the bag. I found out that most people knew there was something wrong.
We have been very lucky. We have not lost any of our friends and we have even gained some. I have found that most people are very kind and supportive.
I decided to go public at the point where I knew that the people around me needed to know. The neighbors across the street spend a lot of time with him. They already knew something was wrong. Everyone else treated me with a lot of love when I went public.
I did it right at the point where I couldn't always leave him home alone, not because he couldn't be left alone but because he didn't like me going anywhere without him. If I had known then what I know now, I'd have gone anyway.
Most people who came in contact with my DH could tell something was wrong. A friend in his retirees group asked me if he had been diagnosed. It hit home with my oldest son when a sudden ice storm hit and DH had to spend the night there. Last year we gave an interview to a local TV station. That helped make it public.Friends at church were very supportive. We have found lots of support from our local Alzheimer's Association. My husband looks forward to the support group we attend there.
Others' response to being informed that there is something wrong and what it is--is their problem, not yours.
Better to tell people what's going on, than to leave them in the dark. Keeping it a big secret can imply that there is something negative (shameful?) about the situation or can leave them creating their own ideas of what's wrong. They can be way off base with that.
Telling, getting it out in the open, removes a lot of pressure from your plate. No more pretending everythings okay. No more being embarressed when unusual things happen. And when someone offers help you can be specific on what needs doing without explaining why. Same thing when you need to call someone for help--no explanation needed.
Sometimes we assume what other people are thinking by our our own perceptions. I've learned to give others the benefit of the doubt because, just maybe, they will be understanding.
Please go ahead and let people know that your spouse has Alzheimer's. You'll be surprised at the support you will find. I have never considered Alzheimer's disease to be something that should be hidden or kept secret. This disease is not something that they "caught" or that they could have prevented in any way. There is nothing for any of our spouses or us to be ashamed of. My husband came home after getting the diagnosis from the doctor (and us stopping to buy cell phones with chaperone) and he sent e-mails to our best friends and to all of our children telling them that he had Alzheimer's. We have told all of our friends and neighbors, and everyone has been very supportive. Most people have a loved one (grandparent, parent, aunt, uncle, etc.) who has Alzheimer's and they understand.
Maria Shriver said on Good Morning, America that in 2003 when she mentioned her father's AD, one or two people would ask her about it when she was in public. Now, she says, 10 or 12 will stop her and ask her about the latest medicines, treatment, where they should go for this or that. She said word has gotten out, and hopefully the HBO special will spread the word even more.
When my DH was diagnosed, quite early inthe process, we were scheduled to have a potluck in our home with friends and family that weekend. That is when we went public. I had lots of brochures and pamphlets and we spent close to two hours discussing and learning about it. That made it so much easier for us, and in the process educated our friends. A couple of them said they were beginning to worry about themselves or their spouses and decided to talk to their doctors. One did actually have the early stages and has since gone into a care facility. I think that being open about it has been good in our case. Yes, some of our friends have drifted, but most of them have been supportive and helpful.
My husband didnt' accept that he has Azheimer's and still doesn't. What I did was write a e-mail to all our family and friends and told them of the diagnosis. I also explained some situation to give them an indication of how he is progressing. I did that last July when he was diagnosed and I've been sending notes out about every 3 months. I don't hear from everyone but a few every once in awhile. They are grateful that I am keeping them up to speed. For the others I don't hear from, including his 2 boys, I am assuming the best - that they just don't know what to do or say.
Diane, one other thing - his sons may just not know what to say, or not realize how bad it is or they may be in denial. They may be living in fear of his type of AD is hereditary and afraid that they might have it when they get older. Two of my children are concerned that they might get it, even though my husband doesn't have the hereditary kind of AD!
I, like you, sent updates by e-mail, and I've sent some of the papers that some of our group have shared here, so that they know what has happened and what will happen. I've also sent out the word of the HBO special.
Your husband is one of several here who deny that they have AD, and I can understand that and even empathize with them. Letting others know the way you have is the best avenue for you under your circumstances. None of us can handle these situations the same way, because as they always say "if you have seen one Alzheimer's patient, you have seen one Alzheimer's patient" -
My husband also did not accept his diagnosis either when it was first given, and still doesn't--mostly due to anosognosia. I sent out an e-mail to his father, and tried to explain to his sister, but she is in her own world of denial. I find it interesting that distant relatives and friends we haven't seen in a while pick up on it right away, and will ask me about what's wrong; but those family members closer to him have a problem. And it is their problem. I have enough to do to care for myself and my husband..they will have to work this out on their own.
I couldn't come out and say the word "Alzheimer's" to anyone for along time. I didn't think I was in denial - I knew he had a dementia problem but I just felt embarassed for him and for me. I was great at coming up with excuses for him - he had a bad day or just old age etc. Most people knew he had a problem and were probably embarassed for me in trying to cover up his problem.
Most of our 'friends' drifted away - some felt Alzheimer's is contagious and made no bones about it. Others quit asking us out as it became more and more difficult for him to interact. A couple of our "true" friends stayed with us to the end.
Sorry Mary for the attitude you get from couples now. It is so unfair. When you need your friends the most they turn on you due to illogical fears. Last summer we worked in a park of retirees. One lady had become very bitter due to this. When her husband was alive they were active with some of the couples there playing cards, out to dinner, walks, etc. plus she was into crafts and such. When her husband died she was flat out told she was no longer welcome in the 'group' because they feared she would steal their husbands. They told her if she wanted to play cards she had to with the single women. How insecure and childish thinking. She was a very nice woman and had no interest in another man in her life. She just wanted her friends. I know the pain cause when my hb had an affair 24 years ago all our friends turned away (even though one hb in the group had an affair years earlier).
Too often when a spouse dies, you loose more than your spouse - you loose your social circle too. You really do have to start your life over - all aspects of it.
In my early visits to thealzheimerspouce.com, joan told me that it was easy to start your own blog. The more I thought about it the more interestng the idea became. I logged into blogger.com and found that I could start a Blog without any coslt and "with the greatest of ease". I use it to keep my family up to date on how Carol and I were doing. But I have also found it to be a platform where I can tell the "unknowing" public a little about this dreaded disease. I think I am up to 6 posts and about 9 comments from friends. Address is:
http://howiscaroldoing.blogspot.com/
Please visit and let me know what you thnk. I really appreciate even more now what Joan is doing for us. I am not a very good writer but like trying.
However, when my aunt died, my uncle at 76, was indundated with home cooked "dishes" brought by his house by the sweet little ole widow ladies from their church, wanting to help him over the rough patches. He would call my widowed mother and ask her to let him take her to a cafeteria in order for him to get away from them sometimes! One of them finally caught him a year later though! <grin>
That sounds like what happened to hb's uncle in Florida. After his wife died, all the single women in the park would bring him food. This is a man that loves to cook and he said 'honestly, some of them are horrible cooks.' He lives in Vero Beach, FL - the state the retirees go to. When we were working at a nearby park in the fall of 2006, we witnessed this when visiting him. Poor guy!
My DH was also one of the 'fortunate' ones that had no idea he had or has AD.(anosognosia here as well) Its the only thing i am grateful for with his diagnosis. not knowing his fate or future was a blessing for him. i went into denial for yrs - like others say after a few minutes speaking to him everyone thought he was fine. so we let it at that. even today he doesnt realize he has AD or that its fatal. i wouldnt want it any other way. divvi
It wasn't that I cared what others thought--it was just too hard for me to talk about it. For years I was Cleopatra, Queen of DeNile, and I was quite comfortable with that. Didn't hurt him, me or anyone else. He never heard the word 'Alzheimer's' that I know of--and I'm w/divvi. I've never had a moment's regret about any of that. Our children knew, of course, but even after I did mention it, people still didn't see it, offered suggestions, things, info--trying to help me help him. It wasn't easy for them to accept it either, they had their own denial.
My sister, who was already widowed, told me, 'from now on your life will be with other widows.' It made my blood run cold, not that I have anything against widows, I am one, but it felt like something vital was being sapped out of me. She is very active w/widows, movies, meetings, card tournaments, theatre, lunch, always on the go. She's the extrovent, I'm the introvert (another thread) and fortunately, I am comfortable most of the time being alone. But it's a bummer, Mary. If they only knew how little I wanted their 'prize' anyway! But no one ever brought me any pies! And since I, literally, cannot cook, I didn't deliver any to any men either--even store-bought ones.
When my DH was diagnosed it was almost a relief (not so much anymore). It explained why he "never listened to me" and why I was always "keeping secrets". It was the AD, and not our marriage falling apart. When he started asking what was wrong withhim and why he always did strange things I could tell him it was the AD and not anything he could control. When they added Lewy Body dementia to the mix after he started having hallucinations the things he saw became "his lewy bodies" and he didn't feel so bad that he could see them and I couldn't. Now he doesn't remember he had AD/LB but it helped through the earlier stages.
I told my closest friends that I suspected Alz months before his dx of FTD. I had no problem sharing the info. It felt like a burden being lifted to share the dx. At first I got tons of support. But, of course we all know how long that lasts.
FTD--It all depends on how comfortable you are with talking about it. At first, I couldn't talk about the dx without crying. Obviously, that made it really hard to tell people. But in time, I was able to tell people we are really close with. The bottom line to me is, you need to tell people in order for the "angels" among them to help you--emotionally or in a practical sense. I got quite a varied reaction--some compassionate, some denial. No one dropped us, but I didn't get as much in the way of support that I would have expected. People just don't understand the difficulty of living with dementia and the toll it takes on the caregiver's life.
The PDF on this site "Understanding the Dementia Experience" is what I sent to my DH's siblings and all our kids once we got a diagnosis. They already were aware of the 'journey' to the diagnosis, as we a 'sharing' kind of family. We initially got the DENIAL from his sibs. My psychologist tells me 99% are ostriches, which helped me be more patient with them. Two of my DH sibs live in the area, so after about a year, even with their limited one-on-one contact (daytime, a couple hr), they could tell we WERE correct about my DH's loss.
Discussing DW's condition and Dx has never been an issue with me, I have always answered almost every question I have been asked with honesty. More people lives have been touched by AD than we realize. Many have had a parent, grandparent, uncle or aunt who have had the disease. Most have never been involved as a caregiver and do not realize how difficult our lives can be. There are some people out there who really get it, most of these have had some experience with the loss of a spouse, not necessarily to AD but to other diseases. We don't have the social life we once had, but I do work to keep myself active in social affairs and involved with our friends.
You are right Marilyn there are some real angels out there, it does help to know who they are.
I am already running into the "single female" syndrom. The funny part with that is all of our years together, whenever we had a party I was always inviting single friends (male and female and not to hook them up either). It never mattered to me, they were our friends and of course they were invited.
Well, I am finding out that not everyone feels that way. Some of the ones that have left have really surprised me and it hurt a lot. Others that have stayed have also surprised me.
I told people that he had AD. His golfing buddies had noticed something was wrong and they handled him pretty well until he could no longer golf. I also told our friends and most of them handled it pretty well when he could still mostly carry a conversation. When I was placing him, a friend had a party for him. I am very glad that she did that as I knew that would be the last time that most of them would see him and it was their chance to say "good-bye". A few have visited him in the facility but as he has drifted away, they don't come around much.
At work, I always answer questions and talk about various things that I have read. Maybe someday, someone else's journey will be a bit easier for me having described some of what I have done and seen. Work has been very supportive, my job was rearranged so I can spend time with him and do whatever I need to do to take care of him, my assignments are such that I can work on them at my own pace and different times. This really helps as there are bad moments in dealing with all of this here and there.
To help others, I usually present a positive attitude and often tell a short story of something fun that he has done. I have a friend who is a quadrapolegic (sp?). Watching his attitude over the years and how people respond to his positive attitude and accept him in the chair is part of what I use as my guide. My own acceptance helps others accept.
I didn't tell anyone in the beginning. I think I didn't because I wanted people to treat him the same as they always had, for as long as possible. After awhile it was obvious to everyone.
Like Nikki I too wanted people to treat him as an equal. I also knew no one would beleive me so I had to wait until he started saying things that gave him away and then I would explain what his problem was.
I've found if you tell one person you've told ten and so on and so on. If I run into someone who dosen't know and they ask about John I tell them he has alz. Most people don't know about ftd or the other forms of dementia. If that person asks questions I am more than happy to give them the details. If they take a step back I smile and say nice to see you gotta go. cs
Our lives were in turmoil when we found out. We pretty much had to tell because I cried all the time and DH had to take short term sick leave which turned into long term leave. We couldn't hide the changes in our lives. Once I got used to saying it, I found I had more courage. Then our angels found us. People we hardly knew had resources for us. The right doctors and the connections to get us in right away, the best attorney, a Sr. VP with a large company who knew all about HR issues and how to protect ourselves, local Alzheimers connections, you name it. That has continued ever since and I'm always so grateful for the help we get.
Liz, we lived in Newport News (Village Green) for two years while I worked for Noland Co. We loved to go up to Williamsburg. We were there in '73-74, until we wanted to get back to Dallas. We could use some angels. Sometimes I get the idea we might as well be lepers.
Today in church the woman who takes my wife one afternoon a month asked me about - ME. She was stressing that I need to take care of myself and not feel guilty. Obviously, SHE GETS IT!!!!! Her mother had AD and she watched her father try to take care of her and the stress he was under. It's nice to be able to talk with someone who understands what we are going through. She is the only one who kept asking me what she could do to help until I finally asked her to take DW while I went to a late afternoon board meeting. It really works out well.
Well it finally stopped raining and it's supposed to be sunny with low humidity all week. If the warden will let me out for some garden therapy, I am going to do battle with the weeds. Wish me luck!
I too, wanted people to continue to treat him as they always had. but that's not a forever problem, eventually, whether you tell them or not, they know. and honestly, it's easier when people actually know what the problem is. for the most part, people are OK, and many are kind and caring, so.... Just go with it. Remember, the truth is probably better than what they imagine. Poor rita Hayworth, the rumors were that she had become an alcoholic when in fact, she had alz.
I feel disloyal to my DH when I reveal that he has AD because he does not tell anyone. I watch him "preparing" for his weekly get- together with male friends for lunch. He clips articles from the paper, brings books along ( usually history), takes cryptic notes and never brings up his diagnosis of AD.
Brooke, My DH has had Alzheimers since the late 90s. To this day, he has not spoken the word "Alzheimer". I don't believe he is congnizant enough to understand the question..if asked, "What is your diagnosis". He has his old leather folder that contains a yellow tablet pad inside. He will pick it up daily and make a column of notes...which look nire like Hieroglyphics. Later, he'll go back to the notes and check off items. Somewhere in "his world", all of this makes sense. ...and, it's okay.