i have mentioned many times how open my wife & I are about her AD. Her discussions have brought out several people at her senior center and they say they feel better discussing it.
Anyway we went to a fairly formal type dinner last night and my wife started talking in her gibberish. She uses real words but they are not connected into a complete thought or sentence, but it sounds real. The people she is talking to squint their eyebrows and I can tell they are trying to make sense of what she is saying. It is at this point I break in and tell them she has AD. I guess they believe it is a compassionate remark (but in reality it is a total lack of understanding) they ALWAYS come back with "Oh yeah, I have that too" (!)
This is a very consistent reply to our disclosure. I then explain that "No, you dont have AD, what she has is very real and you have obviously never really seen it" (I am always nice about it of course) I guess last night it got me thinking. What are they really saying?
Imagine telling someone you have lung cancer and they reply "Oh yeah I got that too". It is the same as if you used a walker and told someone you are awaiting a total hip replacement and they tell you that their joints are a little stiff in the morning also. I know of no other disease that upon disclosure would have someone WANT to say that they shared your diagnosis.
As I say I am nice about it but I am also happy to use it as a conversational pivot to raise awareness about what AD is and what it is not. More people need to know the truth; Alzheimer's disease is NOT 'Old timer's disease'. . . . .
m-mman...I think your response was very good...I am totally amazed at how people still feel the need to minimize this illness. Hopefully you will be able to educate people who will actually "get it", and maybe pass on their new found knowledge to others.
Sorry, but unless someone lives with a person with AD 24/7, they are not going to "get it". Ever. No matter what we say. That seems to be my conclusion after 5 years of trying to raise awareness. Those who have had a relative with the disease are more empathetic than those who have not, but the general public continues to be completely ignorant about the disease. Thus, the stupid, insensitive comments - "Oh, I forget things too."
or...OMG, you dumped a bag of garbage in the toilet too, and tried to flush it??
(My morning...aarrggghhhhh)
Joan how true how true, you have to be in it, taking care of someone to know. Myself I would have never known until I witness it each day, even taking care of his Mom on weekends did not make me fully aware of how TRUE and insidious this disease is.
OT...I feel awful, it is DH 63 birthday this morning, and I freaked out at him when he dumped garbage and flooded the toilet.
(wonder what those "forgetful" people would make of that?)
m-mman we do need to raise awareness, we do, we do, we do but how? I think of the girl who went after the bank charges, she raised awareness and change. For us the ugliness of this disease is what scares people away. How can we do this, HOW is the question ...... I am sure the internet is part of the answer but how? We don't have political desires but that's part of the answer too! We need to awake this sleeping society of this Disease. I think this year everyone politcal person who calls for Money ......I am going to ask have you done for Alzheimers ......and tell them when they can answer that question, then we can talk donations !
Blue, that is hallarious! LOL!! Terry54 that is also a good comeback.
Compare us to breast cancer awareness. Is there ANYBODY left who is not "aware" that breast cancer exists? and can kill? Much of their awareness (and attention, and funding etc.) came from women (and a few men) who stood up to say "I have it!" or "I survived it!" (not possible with AD but who knows that?) Anyway more people saw that breast cancer is not an isolated disease but is in fact all around them.
I do believe that public disclosure of our situation is of beneift. The hook line for my EMS presentation on Thursday is "AD, comming soon to a friend or family member near you" ;-) Jim
i think there is still alot of coverup on the part of just how bad AD really is. and for years we as caregivers try to not portray just how bad it can get. if my own family knew what i have dealt with they would be shocked. its not just about 'short term memory loss'.. far from it. theres aggression, paranoia, wandering, hysteria (both caregiver and patient) , incontinence, loss of mobility, loss of basic function, loss of autonomic skills, and it eventually ends in death. we see movies and specials that are getting a bit closer in identifying some of these issues, but its a long shot to portray the real issues that are part of AD. and while we try to make our loved ones lives as worthy and dignified as possible, how many of us really feel able to talk about what our roles as caregiving can really be like without causing shock in anyone who would listen? they just dont get it unless like the others say you have seen it up close and personal. so i think alot of the unawareness may come from the unwillingness of not really laying it on the line just how bad it REALLY is.
Divvi-I think once more you have hit the nail on the head. Too often caregivers expect others to really understand what they are going through. Unless they are living through it there can't be true understanding. I worry about CGs who wear themselves out waiting and hoping for help and understanding that will not come.
I hope if I survive this horrible battle we all are facing I will have strength to be an advocate for some of us. The stupidity I have dealt with over the years from general public, insurance companies and etc... is beyond belief. I cannot get the insurance company to pay for a bed rail so my DH will not fall out of our bed but they will pay for a hospital bed. I can get a wheel chair (that weigh twice that of a transport chair to lift in and out of the car) but I cannot have a transport chair because it is a convenience for the caregiver!!! Some of your spouses or love ones might know how to push a wheel chair on their own but my DH does not know how to use a fork, shower or go to the bathroom on his own so do they really think he could use a wheelchair and the daily living activities fall on me so who else besides me should have the convenience . STUPID people. don't get me wrong. we have been so blessed with family and friends. even friends that bobby has had since grade school that bought the transport chair as soon as i even mentioned it.
Jim, I have to tell you this - one time my husband, my grown daughter and I were at a dinner, and my husband was stage 6 at this point, and had to have his food cut up for him but he could still manage the fork to eat. He had to concentrate so much on being able to lift the fork and feed himself that he was unaware of the dicussion or anything going on around him. We were at a dinner seated with five other couples at the table that we didn't know. I began to explain that he loved to go out to eat, and as long as he could, I would bring him with me (he couldn't talk at this point either - but could take directions if you used short words). I told them that he had AD. ALL of them nodded. I slowly looked closely at them, and yes, they did understand. Each was either a caregiver or had AD and acknowledged it! They just weren't as far along as my husband!!!!! Talk about a shock!
There is more and more acknowledgement now of the disease than there was 5 years ago. There will be more in the future. But it is very frustrating when they can LOOK normal and yet not be. You can't get through to others what we face and what our spice go through unless they are walking beside you with their spouse too. I think the healthy mind has extreme difficulty grasping AD.
about more awareness. marys comment brought back to mind the last resort we went to with family members. DH was still with it enough to go out and participate in dining. we went to a japanese restaurant where you sit on the bar and the cook cooks there for you. the chef stood along time cooking and doing fun things in front of my DH so he could participate and see what he was doing and particularly performing for his distraction. after dinner he came behind me and said he knew DH had alzheimers, he knew the 'look' well as his dad had it too and already passed. it shocked me but gave me a sense that yes more and more folks know what they are looking at and unfortunately much more rampant.its seeming more and more know 'someone' afflicted. we can only hope more attentions are brought to the forefront and research is strengthened.
I thought this article was appropriate for this thread. I put the direct link up on the home page - www.thealzheimerspouse.com, but in the time old tradition of 'DUH!", here are the "10 critical challenges that need to be addressed to combat the growth and devastating impact of Alzheimer's disease" according to the the Alzheimer's Association:
Lack of public knowledge and awareness of the disease
Insufficient funding
Problems in detecting and diagnosing the disease
Poor dementia care
Inadequate treatments
Specific challenges faced by diverse communities
Specific challenges faced by those with younger-onset Alzheimer's
Joan yes DUH is the what we (caregivers family) want to say to the world at the top of our lungs !!! Today I called my family and emailed my friends. They all donate to my Run2Remember walk in Philly this month .....I have requested another favor from them. During this next Election year start to ask those people/politicans who want money or your vote ......"and what have you done for Alzheimer's ???" Asking the question that they can't answer is a small, maybe even a silly step but at least it is a small step. My state Congressman's name was on the Alz report. I requested his help back in May, filled out all his paper work and never received a follow up call. Living in a small state, I will get to see him as he runs for re-election and I will get to ask him "how come, no return call???" And my Senator will get to meet me in April at the DC conference. It's time I put into action my November awareness. I think Jim's hook line has motivated me .....thank you Jim :)
I want to say something about ignorant people who don't understand--having been one myself. Years ago I worked with a woman who talked about her FIL in a care facility w/AD, how he did not know his children, etc. I listened politely, but in fact I believed there was NO way I could forget MY children. I didn't doubt she was telling the truth, from her POV, but it just didn't ring possible. She never said he'd die, and I didn't think you could die because your forgot how to use the bathroom. When it happened to my DH, I remember telling our children that we'd just go on the way we always had and that if Dad forgot something, I'd just remind him. I knew NOTHING. As time went on, people said things that angered me. I had to sit his sister down and all but drill into her head that he could not do this or that. I know she meant well, but nothing she thought and did would help. This all began in 1993 and things are a lot better, more people do understand, sadly from their own experience, but AD is so hidden, the patient can so easily fool outsiders, and it's so frightening most still think it can't happen to them, or they're terrified that it will. But I know that what the people do on this site & others to educate the public has had a positive effect, I've seen the changes. It's a little story told to a stranger from someone here or on another site, a little lecture before a group, a letter to a paper, books written about personal AD journeys, magazine articles and a lot of prominent people from Reagan to Heston to O'Connor's husband to Glen Campbell. The word Alzheimer's didn't even come into the medical dictionary until 1906 and it was a couple of generations before it came into the awareness of the general public. There's still a world of resistance and shame, as used to be w/cancer. But every little thing each of us do is having a positive impact, it's just slow and takes time and competition from all the other dreaded medical conditions. And I try to cut a little slack for the ignorant, altho some I know will never understand, but progress is being made. It may not be fast enough, but it's having an effect. Collectively, we are making a difference. Good for us.
My mom reminded me of an old story from back when I was a small child.
Wayyyyy back in the early 60s There was one house on our block where a single man lived alone with his mother. Very quiet they never talked to the neighbors so nobody really knew them. (unusual back in the early suburb days)
The talk among the neighbors was that whenever this guy left the house he "tied his mother to a chair". Oh it just seemed so cruel, how could a son do such a thing? And to his own mother(!) A few times mom had run into the street screaming and the son had to 'bring' her back inside. There was also talk that mom had once "turned on the stove" and almost burned down the house. Nobody wanted to know more and certainly nobody offered any help. They both eventually moved away.
At the time it was all chalked up to mental illness (on either the son or mother, nobody could decide who) but thinking back on it from a new perspective I think perhaps I know now what mom's problem might have been . . . .
As bad as it might be now, it must be an improvement from what people had to endure years ago.
Betty I believe you are correct also...and I think a lot of us on this site have made a difference in educating people, even if they do not seem to understand or get it, they have been told, and they have seen us out and about with our spouses. We have a long way to go, but it definitely is an improvement from years ago. Interesting m-mman, about that woman and her son in your neighborhood...I am sure if I think about it, I would remember similar situations from my past too.
There was an article in the local paper yesterday about a man who shot his wife and then himself. They were discovered by the hospice nurse. In the obituary column today it said she had suffered from Alzheimers for 10 years and been cared for entirely by her husband. They were both around 80. I wonder if it could have been prevented if he had had adequate support.
Jim, I really think in the past they were written off as mental illness. They were either hidden in mental wards or kept 'prisoner' in their home. I think this may apply even more to younger people - people that now eventually get diagnosed with EOAD.
Earlier on this thread breast cancer awareness was brought up and the fact that survivors are a big part of it. I think about that a lot and wish AD could get 1/10th of the attention that breast cancer has. It seems to me that we caregivers are going to be the ones who spearhead any progress in this area; the problem is, caregiving is such a heavy burden that once the patient dies, I believe a good number of caregivers feel they want to run away from AD as far as they can. This is understandable (and frankly, now that I've placed my husband, I have to admit it is tempting to do strictly "fun" activities). But, I have decided to stay involved and as Terry54 said, I hope to attend the full conference on Capitol Hill in the spring (while caregiving, I was only able to do bits and pieces of it). Someone needs to focus on how to keep former caregivers involved in the cause rather than drop away due to burnout.
marilyn-now that my caregiver duties are over it is so much easier to continue the campaign of increasing dementia awareness. I can think so much more clearly.
On the news last night was news that very popular celeb who has ALZ made a remarkable return for the better....they said she was so bad she did not know her family , etc..Her family are doing a great job of bringing awareness of Dementia, and have set up a fund to raise money for research...
Last night on the news they said.... last week though, after suffering what was first thought to be stroke, though now no one's too sure what it was, Jeanne, incredibly connected with her family. Professor Tony Broe diagnosed Jeanne two years ago. He is stunned, yet delighted, by what's happened. “If someone with Alzheimer’s had a stroke, you could change the balance a little bit from apathy to responsiveness,” Professor Broe said. “It's changed the balance of the things that are going wrong to the brain, from down to up you could call it. But it doesn't touch the underlying loss of memory in language and communication.” Her DD said..."It was startling. I went in and said ‘hi mum’, which I usually do, and I don’t really get a response. And yet she was there, and it was mum, and she smiled and said ‘hello’ and talked. It's really amazing, and it's made my day. I'm really happy."
There are reports of some Alzheimer’s sufferers regaining some cognitive function after having a stroke; though it is by no means a cure.
This is the link if you would like to read more.. http://au.news.yahoo.com/today-tonight/celebrity/article/-/11486895/jeanne-little-beating-alzheimers
Nora--that's great, but I think you may be unusual in your proactive stance after caregiving. Anyone else want to weigh in on this issue? I did a lot of advocacy while actively caregiving for Steve, maybe that's why I want to slow it down--a little--now that he is placed and focus on reclaiming my life and all the things I had given up.
Bluedaze is an extraordinary woman to begin with plus she brings her nursing skills to the table. However, even though Steve is placed he is still your emotional top priority so it is understandable that you need to focus on yourself more now. You have always been so involved in advocacy, perhaps you will feel differently "after".
Right on Weejun. Bluedaze is extraordinary and a great advocate. I am an almost 2 year widow and I am still here - not posting much - but reading all your comments. Before my dh passing I could not imagine volunteering for Hospice or Alzheimer "in the after". But, I changed my mind - in the after. Both Agencies called me and I debated between doing Alzheimer or Hospice. I chose to start a local Alzheimer Spouse Support group in my community at the Alzheimer's Association but still with leanings toward Hospice. Yesterday I accidently met the Hospice Volunteer Coordinator - in person - and she is very much wanting me to join her group also, where she would love to steer some of her Alzheimer caregivers into joining my present group and perhaps other things. The two of us "really clicked" and I am going to talk further with her soon.
But, at the same time, I am anxious to proceed further into regaining as much as I can of the time lost caregiving. Like you other widows and widowers - it is lonely being alone and also hard to re-start your life since you are much older now. I applaud those or you have found someone new to love and again share your life with.
I am wondering if anyone has used Youtube to post something that would show people what we are talking about. I think seeing it, would open some eyes. It would be like anything else on the internet, they would have to search for it. Family that is clueless, are not willing to research the disease. I guess you have to want to be made aware, you have to be willing to lift your head out of your aXX and look.
Imohr* I have debated going back as the facilitator of the Caregiver's Group I left when I felt my husband needed me more....I wanted to spend as much time with him as I could. Still debating....do you have any thoughts? I know, what these people are going through, however, I don't know how I would feel. I haven't approached the Director regarding this & really haven't ask if the group still meets. Still pondering!
I found a Youtube video that I posted on my Facebook page that might be an eye opener for those who want to know more. 5 million people have this disease, only 38,000 have viewed the video.
I don't know about posting on Youtube..but I have been thinking about making the little video an just sending that in an email to " those who don't get it"..I am not so sure I would want to put my DH out there in such a public forum..he does have rights too and if it would embarrass him I would not do that..but specific emails to family or close friends yes. In fact I am trying to perfect this with my iPhone..some videos can be too long so they have to be truncated.
Kadee* the Alzheimer Association and Hospice Group here in WV, do not take volunteers until a year after your spouse passes. Hospice called me one week after the year to see if I had a interest in volunteering. I called the Alzheimer's association myself and personally talked to our Regional Director. I think that is a good idea. You need time to sort through your feelings. have a break from caregiving, and come to grip with the tremendous upheaval you have been going through the last few or many years. Both groups do encourage you to attend support meetings if they are helpful to you. I encourage widows/widowers to come to my meetings.
I continue to pass on information about how great Joan's website here is and also offer support to other widowed spouses. My advice is to give yourself more time to get adjusted and "go with the flow". If you later feel like you would like to offer comfort to others as a facilitator then seek out the possibilities. If you try and it makes you feel worse instead of better - step back and look to another direction. I know ladies who volunteer to "sit" with a Alzheimer Spouse in their volunteer job. That would not be something I would want to do now. They have many things for volunteers to do - some just answer the phone or file things etc. Not all want to deal directly with a patient like bluedaze does. I prefer something where I am around activity and distraction.
the topic is increasing awareness about AD. these good ladies/gents are speaking of increasing awareness thru their experiences thru hospice and or AD facilities or organizations that relate to AD. thats not off topic. there are dozens of utube videos of folks who have posted personal videos of their AD relatives. and the AD association has many videos as well. divvi
This certainly is on topic. Need for increased awareness of what the disease does to the caregivers is right on. When a LO dies there is a continued need for a new type of awareness.
Report from my recent presentation: 57 people attended all medically connected. No doctors attended, but RNs, Paramedics, EMTs and 8 mental health/Social Worker types. (many of the prehospital care folks were instructors in training programs)
Everyone was surprised at how much they did not know about AD & related dementias. Most everybody had 15-25 years experience in their field. What that meant (and I emphasized) was that their knowledge base about AD is more than outdated. (so much has been learned lately) One RN even challenged me that AD folks must be oriented to everything at all times. She thought fiblets were somehow not appropriate or therapeutic.
It was well received of course and I have requests to repeat it (which I will) but on the topic of raising awareness I had two people come up to me afterwards with horror stories.
One social worker is currently involved with an woman in her 80s who is being evicted from her home for not making payments. As part of the 'eviction soon to be homeless process' someone noticed she was hallucinating. She said 'somebody' diagnosed this woman (AT AGE 80+!) with new onset mental illness possibly schizophrenia and began administering anti psychotic medications(!) Like that is going to pop up suddenly at age 80 with no prior history??
The social worker in my class said she (and her co-workers) never even considered AD or another dementia! She planned to go back and re-evaluate the case with a new point of view.
A fire captain described an EMS run that kept his crew on scene for 2 hours. It was a "crazy old woman" who would not get into the ambulance until she (finally) began to believe that the paramedic on scene was her personal doctor. Only then did she become cooperative.
They both felt that if they understood AD better and how to work with and communicate with dementia people, everything would have gone easier.
So it was successful and each encounter gives me more focus and better direction about what to teach and the value that this information is to the professionals who provide the care. Being able to show WHY they need to know more about AD is a huge step to getting people to invest time into the class. (them to sit through it and for my boss to let me teach it)
Amazing job Jim .......keep up the great work. Moorsb sorry don't have Facebook :( Yes Mimi protect your husbands dignity .......those who don't get it in our family or friends by now aren't going to get it, they have made a choice, and in our humble opinions it's weak of character.....no energy for them but finding and educating those in that can help .....that is the ticket and key to awareness.....again Kudo's to Jim.
Jim, thanks for the update... 57 people is a good turnout; it sounds like your presentation was quite informative and successful in reaching these folks. Congratulations! Hopefully you will get to do more of them.
JIM I wish my DH's doctor could have been in your seminar. I don't think he gets this disease. Read my posted discussion about frustration with DH PCP.. When they are concerned about a pt who my be at the moment 5 or 7 lbs over the best wt for them, when there is AD in the mix tells me this doc does not have enough info on this disease. I am so annoyed I plan to scope out a new PCP, one who has some experience with AD and has more insight. My DH's PCP is the first doctor in all my time since I have been an adult that I have come to dislike, or maybe distrust.
Sheesh . . . 5-7 pounds over weight . . . I get real tired of 'preventative medicine'. Sure it is great when you are already healthy but when there is already a significant underlying disease process, what good is it ???
Mom has a hip that is shot but cant be replaced because of a twisted back. She struggles with a walker and severe pain. The number of folks who tell her she just needs 'exercise' and everything would be better.
My wife was significantly obese her entire life. He had high BP etc. Upon Dx I just stopped all her hypertension meds. Then she just stopped eating so much (less stress eating?) She has lost ~40 pounds she could never lose before. Last med eval she had perfect B/P (!) The med staff complimented her about how healthy she is . . . . I donno is that good or bad ???
Raising awareness about how to 'treat' AD? I think it was Marsh who said he had a doctor who went over each of his wife's problems and asked if he wanted them treated and if so how? Whatta great idea! Somebody who got it. I certainly included that approach in my presentation.
m-mman You are so right. When I ditched the Psychiatrist we had for ignoring my information and questions regarding DH's care and then he wanted to set up new tests---repeats from the year previous, plus Sleep test, etc., I got a referral to a Beuro-Psych Dr. who really gets it. He told me at our first appointment that I am the "most valuable tool in his box" for treating DH. Because he can't possible get the full picture in an Office visit and only I can give him a 24/7 view. Both he and our PCP undrstand and agree that any testing and treatment for DH will be event driven. There is no sense in putting him through pre-test prep , then testing which may have negative effects, to look for things which will require treatments he cannot comply with. JUst recentily I renminded the PCP of that when something showed up on his CT scan at the ER. A benign phenomenon for which nothing is doine unless it causes problems. It's been there for at least 5 years and is causiung no trouble. He was fine with noting the newest view and leaving it at that.
Went online today to the Dr. Oz show, Mentioned it was Alz awareness Month and I hadn't seen a show on that topic. I also mentioned why not do a show on Depression and Alz Spouses ........it was simple to do and who know's if they get enough email's in that regard maybe in the future ....who know's ? Went to bottom of page to "contact us" and filled out the form :)
When DH died, I took hospice classes, thought I could be so helpful, but when I actually did it, found it was not for me. To much driving, too many 'appointments' relating to new personalities. Did enjoy simply reading to bed-ridden in care facilities, but gave up hospice. But after 10 yr CG, I knew I had info that could help others, I did not want it to just go to waste. It would be like having too much food when a neighbor is starving, how could I not share? Then, too, it would be a tribute to DH and all that he went thru, it had to mean something. I had occasion to speak to some AD staff at UCLA and I told them that CG's & docs see things differently. Docs keep records, how did the new test compare to the last one, did the MMSE get worse, what did the scan show, etc. We, the CG are dealing with someone yelling at us about being unfaithful at 2 in the morning, trying to get the car keys away, being threatened, getting them to bathe--plueeze, do not bother me with your stats--we are not on the same page. I could see a few eyes widen and knew it was getting thru. But I can't fault them too much, they knew what they were taught and unless they've worked in a care facility or had personal CG experience, they just don't know. Talking to 57 people is a major teaching moment--it's going to be 1 or 2 at a time, but those of us who stay with it are making a difference.
I also cannot fault any CG who wants to never hear the word AD again. My personal life did not change much. I live in the same house, son lives 10 doors away on the same street, daughter and g'son each live about one mile away, I knew for years I'd be in this position when DH died, it's comfortable for me--the house, the children, but I do miss him even after all these yrs. But my married life died yrs before he did, many adjustments had been made by time and nature for me. I am elderly now, I could go on the speaking tours, but again, too much driving, too much effort and preparation, but I can write and like the solitude of that, so when I was asked by a senior magazine to write an AD column, for free, I could hardly wait to do so. From time to time I hear from a reader who thanks me for explaining things in an everyday fashion. It's 1 or 2 at a time, and that's a good start. Those of us who stay with it do make a difference and AD is not going away soon, even tho the TV ads make it seem so much different that it really is--and that, too, is part of the problem. "Oh, never mind those old fuddy-duddy whiners, all I need is this pill." But eventually they'll come to us, and you can take that to the bank.
A comment about AD care from way back in the old days. . . . I went to investigate AD facilites & day care in the LA area last weekend (better sooner than later) and found a place that caters exclusively to AD. (AL & SNF)
Surprisingly they have been in existance for over 100 years!!! This means that they began delivering care about the time Dr. Alzheimer identifited and named the condition.
Wayyyyyyy back then somebody stated a facility called "The Home for Wandering Ladies". I guess that describes AD about as well today as it would have back then.
We need to raise awareness in different forums, both with the general population and with the medical profession. To reach the general population, we need major public figures to take up our cause. Sandra Day O'Connor did amazing things for AD awareness, but if we hope to gain awareness on a par with breast cancer as one example, we need some major entertainers to educate the public for us. A sad but true commentary on our times is that the public rallies to causes promoted by major entertainers more than they seem to support causes supported by others. Not that I wish this on her or anyone in her family, can you imagine if Oprah Winfrey or someone of that stature started making commercials or devoting TV shows to AD awareness? Those among us who are writing for general circulation magazines or newspapers are also advancing the envelope. Those of us making presentations to groups of doctors or others in the medical field, or to those who work with AD patients, are also making a contribution. Same with those of us writing articles and letters to the editor of medical journals. It's not going to be easy, but Joan has long advocated the need for all of us, collectively, to consider doing what we can to raise awareness and improve current practice with respect to diagnosis and treatment of people with AD and their caregivers. So ... let's keep fighting the good fight as best we can because it's a battle worth fighting!!
acvann--I've been talking about the need for major celebs taking up the cause for years. Hasn't happened yet. I was very disappointed that before Oprah ended her show, she didn't do an hour on caregiving. I am astonished, most caregivers are female and within the age demographic of the majority of her viewers. She could have done a show that would have made a great leap in awareness in the general public, but apparently, it wasn't on her radar. She had done several shows in the past on AD (nothing recent), but they didn't focus on caregiving at all.
Kadee*--Lmohr is right, the Alz Assn does have a rule that you need to be away from caregiving for a year before you can facilitate a support group. However, they do make exceptions. I was asked to lead a group several years ago while my husband was living at home; I continue to do so now (he is placed) and I hope to continue indefinitely.
For the last several years, every January I've been on a panel of 3 caregivers who speaK to a group of nursing and pharmacy students at the University of Maryland. It's part of a minimester course on Geriatrics, and we just "tell it like it is". The talks are always well-received. Perhaps some of you might want to contact local grad schools and offer your services as speakers to students.
More encouraging news. I just watched a new episode of NCIS in which none other than Bob Newhart played a retired medical examiner who came back to visit his old "team" in order to try to reclaim the memories he had lost since DXed with AD. Two of my old school favorites, Newhart and David McCallam, playing off each other in a very touching sub-plot to the show.
Some people somewhere are "getting it" more and more.