I had a weird experience yesterday - I invite you to read today's blog - "Meeting a New Non-Alzheimer Friend", and post comments here. I am very curious to find out how other's would have handled the situation.
Joan, I would have started laughing out loud! Then I would have said that the reason for my laughter is that my husband has Alzheimer's, but he is in the early stages yet, and although I know what is ahead for us, I won't be able to quit at that point like she did! For her it was a job, and for me it has become a way of life. Plus it's different when it is your spouse. If she laughs with me, then maybe we can be friends. If she doesn't, it could be that she was embarassed from finding out after what she had said. No one wants to fight with another adult about bathing and dressing, even us!
Then again, I laugh at the wrong times as well as the right ones! <grin>
My experience with new acquaintances has been that I find little reaction. Sometimes, I feel like I am telling them that DH has a cold or headache; there is no reaction or almost none. With old friends, I find those who have had family members with Alzheimer's are most understanding and helpful. Others who have lost husbands to cancer or other diseases are very good with Bob and accepting of us. Others, good friends who are couples are good, but seem to be at a loss with us. My brothers and sisters and their families are great with Bob. Unfortunately, they are 500 miles away. Maryd
I think for me it would have been an awkward moment that I would have let slip by. To not embarrass her, and give me time to not be offended I would wait until later in the conversation, to bring up Lynn's own plight with Alzheimer's.
Then, where Lynn IS in the later stages, does refuse to bathe etc I think I would have HAD to have laughed and said something like Well, I guess I can count you OUT to help on that end....
I have a dark sense of humor with Alzheimer's as well... when the visiting nurse said she would come once a month to start then more often when Lynn got use to her... I couldn't help it.. I burst out laughing... saying Hello!! You do know he has Alzheimer’s? He wont recall you the second your foot leaves the door! Just cracked me up!
Nikki, you are right. He won't remember her or that she was there within minutes.
But she is also right. He really will get used to the idea that someone comes into the house as it happens more frequently. And I bet she has experienced that as well.
It sounds weird, but we went from total isolation to my husband getting used to the idea that every once in a while I get a visitor. I don't think he would be able to tell you that if you asked him, but wen my neighbor shows up, he fully "gets it".
joan, this is how people feel about alzheimer's. they run or stay away. unless people have had to deal with this horrible disease themselves,i mean closely,as a loved one,they just do not understand,there we go with the education of the public about this disease, again,but my goodness, joan,this woman was a person who should have been educated on this subject,but i have talked to people that work in nursing homes and they do not understand ad. my aunt died of ad in a nh,a good one,and they tube fed her to the very end. they should have understood ad and explained to her children,that was not the right thing to do,or at least explain to them that her body no longer knew how to process nutrients so her family would have had the knowledge they actually needed to let her go. i am sure this happens all over the place and it really upsets me. as for your neighbor,i'm sure she had no idea your dh had ad or she surely would not have said what she said. lots of people don't stop and think before they speak,but that kind of job,i think,takes a special person that can deal with all illnesses. ad is not the only illness that you have to change and bath a patient. i think she needed to get out of that line of work,it has to be stressful.and lots of people can't take it. if they don't love their job and really care for the patients,and i mean care for them like they are still a human being,then they do need to quit the job of helping sick and disabled people. but i would have told her my dh had ad,after she got through talking about how discusting it was. i would have put my hand on top of her's and patted it briefly and told her to not worry about it, [after she picked up her chin off the table from surprise] it is very tough and you understand it can be stressful,but we never know what we will be faced with in our lives, then i would have gone on with my lunch and talked of other things. i can make a bet she will stop and think before she says things like that to someone again,and i would go out of my way to speak to her when i saw her and who knows,she may turn out to be a great friend and neighbor. my grandmother always said that " you can catch more flies with honey". i try to remember that. sometimes we can get our point across better if we are dripping with sugar and but sometimes it is impossible no matter what or how we approach things. sad to say,but some people just don't care,but then,sometimes you are surprised at the ones that really do. i've got to go,i've got to clean up all this sugar!!! grin jav
As I said in the blog - I just said that my husband has AD, but is in the early stages. I did also say that I fully understand how difficult AD patients can be, and I let it go at that. With or without the AD statement, we just didn't "click", so I tend do doubt we'll see each other much.
Jav,
I learned the "sugar" routine a long time ago. Spending 25 years in Special Education and having to deal with difficult parents, kids, and administrators, teaches you fast. I pull it out and use it when I need it. :)
I have a nurse friend who works in a nh where patients considered difficult ie won't bath, change clothes and/or are physically abusive are all put in the same locked unit. It is considered by the staff the worst place to work and often staff are transferrd to that unit as "punishment". I do think that if there is an insensitive administration of a nh the new neighbor might have had a bad experience. Imagine having to deal with say 15 patients like that in an 8 hour shift. It's difficult enough dealing with one. But because of that experience I think it would also be difficult for her to be your friend.
Joan - Being the "analytical" goof that I am, I guess I would not have let on that my husb had ad & I would have started quizzing her about WHY she felt the way she felt. Not in a 'challenging' way, but just 'wondering'...based on her response, perhaps more questions...I am not sure this is the right approach, but it might lend an ear to WHY people "run" like they do...and I guess if I was not in the position I am in, i.e. my husband with the Alz (or mom or dad or sister or other family member), I might "run" too...altho now, after dealing with it for 4+ years, I hopefully would draw close & encouarage both the afflicted, and esp the care-giver, in the journey. My husb said just today "why do we have to go through such hard times"...a complete sentence, no doubt...all I could offer him was the words from the bible "In this world, you will have trouble", but as a follow up, Jesus said "But I have overcome the world"...we hugged for a long time after that & of course, tears on my part...then "I'm so sorry" on his part...i try not to cry because he thinks he's done 'something'....of course I reassure him he's not & it's okay. Joan, you are doing so good with Sid & all that you are dealing with...as I read your blogs, I feel for you each & every time & THANK YOU for your insight, thoughts, and encouragement to each of us...you are our hero in so many ways!! And to quote a 't-shirt' @ the Apple store just today "Hero's don't always wear capes"...Love you!! xoxo
Interesting how hard it can be to "read" people. A year or so ago when G was showing symptoms to others, a couple of our very closest friends were over for dinner (35+ years of friendship). I quietly told her what was happening in case G said something off, and her only comment was that she hoped he didn't repeat himself over and over as it was so irritating (her FIL did this). I was so flabergasted, I didn't even answer her! Last time we have been together...big surprise?
I can understand the person I was with relating her story about working with an AD patient, because she didn't know my husband has it. But for a life-long friend to make a comment like the one Kathi37 mentioned is inexcusable.
Maybe I should be more tolerant, and give Kathi's friend the benefit of the doubt by saying she didn't realize how insensitive she was being, but I just think she should have known better. joang
This has been the most upsetting reaction of all our friends. She is a "white gloves" person...known for her ability to smooth and smooze to cover for her sometime's boorish husband's remarks. She wouldn't purposely be hurtful, but so unconscious? She keeps saying "we"ll get together for lunch"...I asked once about them coming for dinner, and the subject was changed immediately..husband has a lot to do with this, but he considered G his best friend ! I think it is because this nasty disease must be contagious ):-I
I agree, Joan, inexcusable! When I told my husb's best friend's wife about it, she got a look of HORROR on her face and just said "oh no"!! Very concerned; very sad; very upset for us & for them to be losing their friend. Like Kathi37's friend who had a FIL with the disease, this friend too had an experience with it as her bosses mom had it (she recently passed away), so our friend knew first hand what a tragic road lay ahead for us...i think some people just have the gift of encouragement and compassion...sadly, alot do not.
What stage is your husband (the 1-7 Alz. Assoc. staging)? My wife is 5+ (6-). Relationships were easier to keep at stage 3 - not so easy now. It's really too much work for people to engage her for any length of time (and I can't blame them).
I don't pay much attention to those stages at this point, because he has lost a LOT in some areas - short term memory; abstract thinking; processing speed; complex comprehension - but almost NOTHING in other areas - visual perception, sense of direction, visual memory.
He does very well in one on one or one on two social situations. No one would ever know there was anything wrong. But he feels much more comfortable with our group of Alzheimer friends - he doesn't have to worry about goofing up or forgetting something or repeating something, because he knows they understand. We are both very happy with this group.
Count your blessings!! Two words out of my wife's mouth and people are giving me the "What's up?" look.
I'll have to print some cards to forewarn people when we're out in public. The other day I had to corral the saleslady in the "intimates" department when we went bra shopping to let her know of my wife's condition. The saleslady treated her like royalty - she was a gift from heaven
I'm at a point where I wouldn't be offended by any non-malicious comment.
some people can be so sensative and caring and some people don't seem to have a sensative bone in their bodies,just don't have it in them. most of the time they are what i call a me person,just think about themselves,but you know the old saying,what goes around comes around and sometimes people have to "eat alot of crow" for the things they say,they better watch out. it could be them or their lo next. it never ceases to amaze me about the things that come out of peoples mouths,but it really hurts when it is a longtime friend or family member that is so crude and selfish. jav
kathi, you said that her FIL asked the same questions over and over again. It is very possible that she is particularly sensitive to that particular symptom because it is the one she is personally dealing with on a regular basis. It is possible that she totally understands the problems with dementia, while not understanding the problems with being a caregiving spouse. The children of dementia patients (including in-laws) hurt too, but they don't always "get" the differences between being a spouse and being a child.
In the case of her husband, he really might thing the disease is contagious and that he is getting it from his father. I think, if they are dealing with dementia too, you might want to cut them a little slack. They, on the other hand, ought to be a bit more understanding of where you are.
Neither is the case here..it is a step father in law, and they don't have to deal with it except on an occasional visit. I was being faceitious about being contagious, in any case.They have little or nothing to do with him. It is just the way it is! Still hurts, however.
kathi37, we've been so lucky...our best friends of 40+ years who live in another state five hours from us come down for the weekend every chance they get just to be with us (him, to spend time with him for as long as he's here and me for support and friendship - they have become more like sister and brother) and just watch his movies with him and visit with me...we go out to eat and they talk to him and phrase their questions so he can answer yes or no...and if he starts to put salt in his coffee, she will exchange it for the sugar packets while talking to him about something else!
I'm sorry your friends are not as caring for you and your husband. They should be ashamed of themselves for being such superficial friends....
Mary, you are very fortunate, and so are we for the most part. We have always had a tight group of friends since college days (gals were all sorority sisters), and they have all been great, I should not let it bother me so much. For your friends to drive that distance frequently to share time is remarkable. I love it when the sun truly shines.