Today was on my hike...my GF and I were talking about AD..she was asking if my DH remembers that our middle girl is now in Iceland..I said no..that each time we talk to her either on the phone or skype he asks and she tells him..And my GF said well when he is told often enough he is sure to remember this...my mom does... I said your mom is 92 and does not have AD..maybe a memory slip a senior moment but not AD so she can recall somethings she has been told recently. A person with AD cannot. They forget recent and recall days of yor.. Why do you think they get to a point they don't remember who the spouse is or kids are when they are looking at them? She says Well keep working on it....he will get it and remember it...
That's why when he asked what we are having for dinner and I said ham, he asked in 5 minutes what we were going to have for dinner..or when we do go out and have ordered, he will ask when we are going to get to put our order in...yep...just some more practice and he will remember.. Good grief.
Yup, just had a friend email and said that if my DH kept active he would do a lot better - at some point I may have to apologize for the reply he got!!!! or not.
Well...what can you say? Those of us who live it, know the ins and outs intimately. I guess we can try to explain in cases like that...maybe being education-oriented is a good attitude to have.
Could be that our best approach would be to factually, plainly, and with as much dispassion as we can muster, provide our clueless friends with a short lesson in what Alzheimer's means.
Ok, but these are the same people that will be emptying the stores of lanterns and flashlights as we come towards christmas 2012. Want to make some money? Buy these things and bottled water and put them away. When the mob works up into a frenzy open a stand in front of your house and sell them for 10 times what you paid. Just take cash. Then go shopping after christmas.
My FIL was a master carpenter and he had two sayings. One was 'dumb as a bag of hammers'. The other was a bit more useful. Measure twice cut once.
It's tough being forced out of the normal world where the superficial cuts it on so many topics and into a very real world where dealing with so many serious issues washes superficial right out of our hair.
I describe these forums as "the most sincere bunch of people in a group you're going to come across". Yah, that's right we have to be. That's not my point. My point is we are. That's why 'normal' people look superficial. They're not. They're normal. Normal IS more superficial. It can afford to be.
You know how we have business cards to give to people that say "Please be patient, my husband has Alzheimer's?"
Maybe there should be a one page, pamphlet size hand out, that folds down to carry size, that we can keep in our pockets to hand to people when they say these things. It could have information to help put these common myths to rest. I'd be happy to design one. What do you all think it should say? We can start with: Alzheimer's patients have difficulty learning, and eventually simply can not learn new pieces of information - no matter how many times they hear them. Alheimer's is a degenerative brain disease - no amount of excercise is going to help an Alzheimer's brain get better - Alzheimer's brains do not get better. I know you forgot things, too, but you will eventually remember - Alzheimer's brains do not remember - because they can't.
Another for the list: Please don’t ask if my loved one is getting better – they are not, and they are never going to.
We could start with: I know you are trying to be helpful with your comments, but I would like to share the sad truth with you about Alzheimer’s disease:
We could end with: When I hear remarks that minimize the horror of this disease, it minimizes me. I need your support more than ever. Here are ways you can help: Tell me that you are thinking of me and praying for me. Pray for me. Take my loved one out for a long lunch, a long walk, on a field trip, or to a movie, so that I can have time to regroup. ...
Another: Don't talk like he isn't in the room. I will answer if he can't but don't say to me: "Does he always eat with a spoon and knife like that?" in front of him. He does not know why he eats like that but it is demeaning to him when you talk "above" him.
Mary22033, RIGHT ON! What a great idea. I love your beginning & end statements. Unfortunately when handed a pamphlet most people just glance at it & put it down. But I DO think it’s a great idea.
It would be great if we did have some place where we could order pamphets to place different places like at the dentist office, eye doctor, tax offices,auto repair shops, or any place where people wait for some type of service.
It's people like your girlfriend who make me SCREAM!!! ARRRGGHHH!!!!!! I have a friend who keeps telling me that my husband, you know, the husband with the diabetes, two fractured knees, and neuropathy, should get up and use his legs, exercise, and walk, because that will do him good. According to this same friend, my husband, the one with incurable AD, should attend seminars, classes, read, and keep his brain active, so his AD won't get worse. Once more, with feeling -AAAAARRGGGH!!!!
LMAO...Oh My...my dh has a cousin that calls him about every two weeks and then I talk to her a little bit after he has talked to her. The first question out of her mouth is: " Is Jim getting any better?? " Geeeeeeeeeeeeezzz...this has been going on for 4 years. I always tell her this condition only goes one way...worse.
Yesterday I was given at a support group a great booklet from NIH called "CARING FOR A PERSON WITH ALZHEIMER'S DISEASE: your easy-to-use-guide from the National Institute on Aging. Have any of you seen it? I just went to the site where you can order it:
http://www.nia.nih.gov/alzheimers
You can get several copies and I suggest they'd be good to place in doctor's offices, etc. but also for you to read and give to aides.
I just love it when stupid people ask me if my dw is getting better. I usually reply that alzheimer's is a progressive terminal disease, and yes she is doing much better than expected. I always expound how she may only live another 8-10 years but at the rate of progression, she may only last another few years...I also mention that she is breaking medical records and that her doctors are surprised that they cannot do anything about it. Stupid questions DESERVE stupid answers, and I am an expert in stupid..... There is a fine line between genius and stupidity......genius has limits.
My sister--the most with it and understanding one, when told DH had asked the respite aide to clean up the microwave and was upset that she didn't, asked why he couldn't do it himself. I told her he didn't know how. I should have said, "He used to know how but doesn't now, and with the tremors in his hands, it isn't safe."
Joan, my GF ended with a comment rather like " if you say so" to which I said those who do not live with this every day day in and day out do not understand what this disease is about and what it does. If I could get her to go to an AD meeting sometime it would enlighten her...maybe but she is a dentist and is not free to come. Maybe if we could get some of our friends to attend an Alz meeting and they were to hear what others have to do, and endure, maybe they might just start to get it.
I have another: "You chat briefly with my loved one and walk away comforted that he appears normal. When we return home he is totally exhausted from keeping up that appearance; he will likely be confused and agitated as well."
ElaineH, I think most people ignore reading materials because they contain too much information, and the info is too abstract. If we keep it concise, this pamphlet could give friends a real understanding of what it's like. Because the reality is, when people say stupid things to me I seldom correct them. I don't want to be a "Debby Downer." I don't want them to feel as though I am attacking them. I don't feel as though I can explain it well enough for them to "get it." Etc. But if I could pull out a litlle folded sheet to hand them as we part ways - I would probably do that.
I'm thinking half the width of a normal page (4.25" by 11") and folds in thirds, so when folded it would be just (4.25" by 3.7").
Give me the points and I'll pull it together and we'll see what we come up with...
I join my husband, who is in an 'impaired memory' ward, for lunch and a couple hours of conversation each day. A few sessions in this dining room with 20 to 25 impaired memory patients would quickly educate anyone who wants to know the reality of dementia.
mary22033, I think that is a great idea if it is not too overwhelming for people to read. I looked up the nia one that briegull noted but it is very long and I know that most people won't read it through. Things to note would be the one you mentioned about how they can seem fine in a short conversation but it takes a lot out of them. I would be happy to donate to the cause.
My SIL once asked me, "What would happen if you didn't help him with something...like getting him something to eat/drink...wouldn't he eventually figure out how to do it himself?" I told her he would probably starve! She also thought it was "the cutest thing" when once we were out to lunch with her and BIL, and she noticed I was explaining to my DH how to pick up his sandwich--he was taking it apart and trying to eat the bread first, then the insides...so I was explaining and demonstrating how to make it simpler for him, talking quietly, and taking much time so he would understand. It was not an easy task, and he eventually ended up having to eat it with his fork after I cut it in pieces for him. And she thought this was cute? AAARRRGGGHHH! I have tried to explain things to her many times...and she claims to have read a lot about AD, but like others who don't "get it", she probably never will unless my DH stays with her for a few days (without me).
Interesting thing happened at my son's memorial service last week. Friends (?), people from church, past work, etc., saw him MORE THAN 10 MINUTES and many remarked to me afterwards that they had no idea he was as bad as he is. They said when they see him for a few minutes he seems so "normal". He wouldn't leave my side, I had to lead him around, he was stumbling, he introduced one friend to another as his son - and on and on. They all said they didn't see how I did it. It did my heart good to observe and hear the comments. But, I doubt if anything will come of it.
"You may admire my care giving of my loved one. Please understand that at some point they will require 24 hour care and I am only one person. I will have to place them in a facility. Don’t misinterpret that as any change in my love or devotion. I will place them because they require that level of care."
Mary, I like your quote...some people just do not understand that decision many of us have to make. It is because of our love and devotion that we place our loved ones, in order to keep them safe and cared for in a way we are not able to provide any longer.
Sorry to say, but sometimes I don't get it. I think my DH is doing OK in stage 5. Then we go to the doctor and the doc gives him a cognitive evaluation. I don't realize just how bad he is until I hear DH try to answer the doc's questions. It never fails, we leave the office and I'm shaking and sick to my stomach. I don't want to go back and have DH go through that anymore or myself. After the diagnosis, I ordered 5 books and searched the internet. I am now educated. For those who've never been around someone with dementia, they just don't know. My kids don't get it. We're learning as we go.
Mag, I know exactly what you mean. Except we don’t go to the neurologist anymore, DH refuses. You would think after all this time (dx in 2006) that I would get it & for the most part I do. But there are times when he seems so “normal” that I get lulled into thinking, “Oh, it’s not so bad.” Then the ugly demon rears its head & he gives me that “evil look” & says that he wants to go home. Or he tells me not to steal his stuff. Or he goes to bed fully clothed with his baseball cap on. Or……. I could go on & on, but I don’t have to tell you, you live it too. Maybe not in the same way, but you understand. I am lucky in the fact that my kids DO get it & my daughters help me & when my sons are in town they do too.
Mag, At home all seems ok. It is when we are out somewhere new, or DH has to follow directions from someone else, doctor, nurse, that it becomes all to clear just how bad he is.
Elaine, I had been given that "evil look" for years. It has mostly gone away now that DH know he is ill.
I guess I am no longer the bad guy he thought I was.
I understand how you feel about going to the neurologist. My husband only sees his neurologist once a year and today was his yearly visit. He talked a little bit to my husband and asked him just a couple of questions. He then said to me he wasn't going to ask anymore. I knew my husband had declined in the past year, but when the neurologist went over with me what my husband could do last year compared to this year I was shocked. He said that last year he would have compared him cognitively to a 6 year old and this year he is at a 3 year old.
I don't think we who live with this 24/7 truly sees how quickly things change. It's the first time in a while I've felt like crying. I think the doctor could tell I was a little shocked because when he walked us out he gently said to me you know this disease is not just one person's disease. It affects both of you but you (meaning me) are the one who has to change. Not my husband. He also is a big believer in getting in help earlier rather than later. It is due to him that I started my husband in day care a year ago.
I'm new to posting to this site, but have visited often. I also go through periods when I question my husband's diagnosis, especially when he seems to be back to his old self. He's been taking the Aricept and Namenda combo for about seven weeks and I've seen a positive change in him -- more talkative and engaged. But he had a bad episode at the end of November (collapsing after getting lost driving locally one evening) and was hospitalized. He was very disoriented during the hospitalization (mainly for observation) and became combative, especially since he insisted on leaving the hospital after I left to try to get some sleep.
He is still very functional on many levels, but doesn't do much except watch TV and quite honestly, he's happy as a clam while doing that. I believe he's happiest and functions well at home, since it's familiar territory. When he was still working, I would see him come home totally exhausted after going into his office (commuting by train) and he was only doing that one day a week.
I just try to capitalize on the happy positive moments -- the really bad ones haven't started yet -- I prepare myself by reading everyone else's comments. We're all in this together and I'm thankful for the support I've seen on this and other forums.
Yes we do get lulled into thinking things are still status quo even when changes come along..The other day I finally took note that DH won't fix anything for his breakfast now..he will say he is not ready to eat but will get something in a bit..well after watching this new trend it is clear that if I fix it anyway he will eat otherwise he will THINK he ate.
There is a book a friend gave me for Christmas called "Hannah's Gift" A Life Fully Lived by Maria Housden. It is a story about a little girl who develops a deadly cancer..this child is just amazing for age 3. She shows so much insight and courage it is breathtaking. What I identified with, of course, was the mom who goes through all the stages and as was said here at times was lulled into thinking her child was not sick at all...The book is a fast read, and well written, not maudlin with lots to think about. And after the child died, the mother tells of her own growth and how she found herself again and it was not easy. For those of us in this hell now, and for those who are having a really hard time following the death of the LO, it shows we are not alone in whatever crisis we have, that what we face is all too "normal" and hard and she shared how she found herself again. Maybe if we pay some attention to what Maria endured we can learn from her path to recovery after this horrible loss of her little girl.