We have attended the same church for over 15 years (Robert actually has attended there since he was a teenager). I don't know how to deal with the questions every Sunday about Robert's condition. We get stuff like "Robert's doing better isn't he?" And hey Robert, are you retired now? What the old lady won't let you go back to work?
I am assuming that most of the people there don't know that Robert has AD. They know that he has had issues with depression and the like in the past and are probably assuming that is what is going on. I also have the other dynamic of the fact that his parents also attend there. His dad is a deacon. His dad (not sure about his mom) doesn't think that Robert does have AD.
I feel like getting up in front of the church next Sunday and announcing that Robert has EOAD - please don't ask him about retirement or driving or anything that will make him feel like less of a man. I have to listen to Robert rage about it when we get home for hours.
What do you guys do? Unfortunately, this is one time when the gossip mill is not doing it's job of spreading the word around.
Leighanne, I have no experience in this area but my thought would be to ask the minister to include in his sermon of the day the issue of dementia. There must be several people in the congregation with this affliction and it would therefore hit home with many families. He should be able to speak in general terms about how people are affected when others make insensitive comments or ask ridiculous questions. I don't know if this helps but it might we worth a try. Inge
Bill belonged to the choir at church and he stalked out of practice one night. Shortly after he was diagnosed and when one of the choir members (a good friend) ask how Bill was I told him about the diagnosis , without Bill being there. Word quickly spread through the choir and after that the only questions we get are "How you doing?" They have all shown concern without being abnoxious. The gossip mill worked in our case.
I have wondered, since the Dx (January '07) just how much info I SHOULD feed into the gossip mill. My initial instinct was to keep it a little private--just family and close friends--because I didn't want Jeff to have to face being treated weirdly or overly-solicitously by people.
But I think that most people have the basic common sense to be reasonably respectful of the AD person's capabilities, so I probably need not have worried about that. And--as Leighanne has found--it can be worse when people don't know the truth.
At this point though, it would seem a bit strange for me to go around saying "just so you know--Jeff has AD..." So, if it comes up in conversation, I may introduce it casually, but neither of us feels like dealing with the shocked, I-don't-know-what-to-say, reaction that many people would inevitably have.
We told our Sunday School class about DH EOAD a few months ago. They have been a tremendous support. My husband's heart stopped right after church service Memorial day weekend. Several members in our church helped us and a stranger followed me when I drove him to the ER. She came back after he was admitted to the hospital and told me her father died recently from AD. Our SS class made dinners for us that week. .
Your church members hopefully will be able be there for you. Can you go to talk to your minister? We did this recently and discovered that our minister's father has AD so he truelly understands what we are going through. I find that I need God more now than ever
May I offer a suggestion....perhaps you can have some cards printed with information re: Robert has Alzheimers disease, has great difficulty with short term and long term memory, we welcome light conversation with social greetings, do not become offended if he repeats thoughts, or doesn't know your name. these cards can be used with strangers in stores, etc. also. Can be modified as disease progresses.
There actually is a card exactly like that. They were given to us in our Support Group. The front says Alzheimer Association - it has the 24 hour helpline on it, as well as the 800 number for our area chapter. The back of the card says, "My companion has Alzheimer's Disease. This is a brain disorder that makes communication difficult. Your patience and understanding is appreciated. Thank you."
Carewife's suggestion is even better. You could use the front of the card I mentioned, and as Carewife said, modify the message on the back as is appropriate to your situation.
The "who do you tell?" and "how much do you tell?" issue has plagued us this past year. When we lived up North, our best friends knew everything we were going through trying to figure out what was wrong with Sid and our attempts to get a proper diagnosis. Then we moved to Florida in July 06, and got the diagnosis in Oct. Of course, we told those friends, and they have been completely supportive.
But then there was the dilemma - what to do about new friends we met down here. We didn't want to meet someone new and say, "Hi, we're Joan and Sid. Sid has Alzheimer's.", especially since it's not immediately noticeable to outsiders. Just because of the way things turned out, most of our social friends are now those in the AD group, but we do see another couple socially, and I finally told her last month. What a sweetheart - she does home jewelry shows - the company has a fundraising component, and she wants to use it to raise money for Alzheimer's.
Sid made friends with a divorced man, and he finally told him about his AD. Twice. (He had forgotten he told him). Anyway, so far, his friend seems okay with it.
The gossip mill worked well for us too. We are in an apartment. I thought I had been hiding Gord's memory loss from people but when he went to the superintendant who is also our friend and asked him to remove a strange woman ( me) from our apartment, that really let the cat out of the bag. The word spread although a lot of people already had surmised that there was something wrong with Gord. Everybody has been kind and helpful. I also know that if I am in trouble, I have a lot of people to help.
At least you're just a strange woman. I've been a stranger, that person and that guy. He just doesn't like "those guys".
Most strangers do seem to be understanding when they know. I only wish relatives were as understanding. I believe this disease is so common that most people know someone who is affected by it so they are more considerate.
In our situation I found out when I finally broke down and stop trying to make things appear normal, I was under much less stress and people did not expect as much out of Jim. It is better to get it out in the open somewhat like you would any other disease, cancer, heart, etc. It is nothing to be ashamed of and most people have had it in their immediate family. We are not alone.
I know that it has been helpful for me most of the time. That is being honest..We have a neighbor who told another neighbor since Larry puttering in his shop that he must be faking..Oh I was so angry..BUT the neighbor who told me this said he told the neighbor who was rude well gees you must not have had colon cancer cause we saw you out puttering in the garage..When you were suppose to have been sick..I find most people are very protective of my husband.. As I said if the one neighbor wants to be stupid it is on him between him and God...
I've found that with the neighbors knowing about Bill that I feel safer for him. The ones who know all keep an eye on him and watch out for him. One neighbor knocked on my door one morning to let me know that Bill was out walking, this was when Bill could still find his way around the block, I told the neighbor I was very glad I knew he was helping me watch out for Bill. Just recently another one saw Bill turn the wrong way and brought him back home. I'm glad I have neighbors I can count on for help and assistance.
I wish I could inform every neighbor in the subdivision so they could all help me. AD is so prevelent that there is not the stigma that there use to be. I read somewhere that an AD patient said, "We are not crazy, we just can't remember".
I feel the same way as all of you. As well as looking out for Gord, people are making a point of stopping and chatting for a few minutes and that is just wonderful. We live in an apartment and there are people in 2 buildings who know about him and would stop him from going too far.
I try to get the word out, but Robert is always right there beside me when we are at church. It seems that the fact that he has AD is one of those things that he can not retain. Everytime he hears it, it's like he's hearing it for the first time. I don't want to say something in front of him and have him go through that realization in public.
Right now, we (I) teach the kindergarten Sunday school class (I've taught it for 7 years now). I've asked the lady over Sunday school to look for another teacher. Robert is ok most of the time, I'm just afraid that he will decide one day that he doesn't like one of the kids and he will be like he is with the little boy across the street. So, maybe when we get in an adult class, I can find a way to get the message across. Maybe if I can get everyone's e-mail address, I can send a discreet message out.
Leighanne, email is exactly the way I told our friends and church family about Chuck. For one thing, I couldn't tell anyone without crying so I cried to myself as I composed my email message. It was the perfect way to let people know. I treasure the wonderful messages that were sent back to me. What would we do without our friends?
I too sent an email to all extended family members before our Christmas gettogether last year. I took my time composing it, deciding what to tell and how to say it. As a result everyone was kind and helpful during our three-day stay at Lakeside. I'm sure most of them knew or suspected before, but nobody had dared say anything to me. Some of my SIL had asked my DIL the year before if there was something going on with Siem, but not knowing how much I wanted to tell them, she had kept her answers vague. It was a big relief to get it all out in the open. I had talked to my mother a couple months before when we were staying with her and I thought sure she would have noticed. But she hadn't. I had delayed telling her because I didn't want her to worry, but being 88 and having dealt with lots of friends and family with AD she is remarkably calm about it all. Maybe I was even a little hurt that she was not more concerned about ME. But on the whole I'm relieved that she is dealing well with it.
Once we got my DW's diagnosis of probable AD six years ago, we never tried to hide it, and I'm sure that was the right course for us. We both understood that it's nothing to be ashamed of -- no more than diabetes or arthritis or cancer or whatever is something to be ashamed of. Leighanne, I believe that if you'd just let the pastor know, straight out, that your husband has AD, he'd get the word out and you'd find loving support and understanding from your church family, and an end to inappropriate questions.
There was the point when I decided to go public with all of it. I've never been sorry. There were a couple of groups I told as a group and told them to pass it on, which they did. I also did a group email for my tiny extended family. And once I'd given myself permission to tell people I found it much easier to tell anyone I needed to tell, like the podiatrist who were have only seen twice now and her staff.
I believe it is much kinder to my DH if people who interact with him know that he has Alzheimer's Disease. I have whispered the words and simply mouthed the words - and received the "Ohhhh, OK" look back. From then on, it's much easier. When workmen come to the home, I quickly mention that my husband has AD and say with a smile... 'don't be surprised if he tries to throw you out of the house.'. They will usually smile back and say, NO PROBLEM...and actually go out of their way to interact with him, introduce them, saying, for example, "Hello Mr C., I'm Bob and I'm here to fix your air conditioner, (etc etc). I have found that people are very kind when they are brought inside the loop of knowledge.
Leighanne - how is it going? I would imagine being in a church where his parents are and they are in denial, would make it even harder for people to accept his diagnosis. As for the comments they are making about working, etc., sounds like it is their way of treating him like nothing is different. Wrong and hurtful, but their way.
Would it be inappropriate to ask permission to post a note in your church newsletter that might be brief and to the point, ie,
"We appreciate your prayers and understanding as __________ begins his journey down the ever-darkening Alzheimer's path. As difficult as this is for him and his family, it will be made much easier knowing that all of you will be there to assist us as we strive to maintain his pride, dignity and self esteem."
I have been known to go to the biggest gossip, tell them the news that I want distributed, and ask the gossiper to be sure to get the word out. Works like a charm.
<grin> As a matter of fact one of the groups I went to with my "news" when I went public included the biggest gossipers. Like you said, it worked like a charm, especially because I told them to spread the word.
We live in a retirement home. My husband goes to 'daycare' 4 hours a day 4 days a week (that is all that is provided here). There is an 'in house' TV station. Last month the TV station was publicizing the 'daycare'. Guess whose photo was on it. Fortunately it does not bother me to let all 1900+ residents know. Now when I lose him in the dining room they bring him to me.
I made a carefully worded e-mail to our extended family. And, I told a select few people at church. I'm sure everyone knows by now. That's ok. I'm finding like the reset of you that he gets very kind treatment and people do make a point of interacting with him. I'm very happy about that.
I've also let our neighbors know just in case he should wander. He never has, but you never know.
I'm finding this journey is getting easier as we travel it. So far we have been able to handle most everything that comes up. There is so much he cannot do, but he does try. He can't remember anything for a full minute. The biggest problem I have is having to repeat myself so much.
Oh, and one other thing, he's started muttering and it sounds as if he's waiting for a response from me. I can't hear him and if I could hear him, I wouldn't know what he's talking about. Does any or your dear ones mutter?
My husband does this and if I'm within earshot, often I'll say, "i'll be there in a minute..OK????????????" and not wait for an answer .. It's babytalk, in my mind. Odd thing is one day he will talk, one day he is silent for the most part and/or mutters. It's as if he goes back and forth with this stage. I talk to him so much, either commenting on a news program on the TV or what I'm doing..he's probably just 'testing his voice'..to get in a word.