Yesterday I gave a talk "Alzheimer's Disease from the Caregivers Point of View" to our local medical staff (all primary care physicians). A lot of the material came from comments you all have made regarding personal issues and issues with doctors. It was well received and they asked a lot of good questions. There were some I could answer only because I have been following the discussions on this site - Thanks.
It's helped by the fact that I am also a physician, so one of them. I told them that when I was in practice treating AD I had no clue as to what the caregiver was going through, so was able to give them information from both viewpoints.
As a physician, the other physicians will listen to you and believe you, Marsh. Thank you for spredding the word! All it takes is for someone to start speaking out, and hopefully others will follow!
Marsh, are your 7 stages of being a caregiver different from the ones I listed?
My DH's son is a neurologist (but lives 3,000 miles away!). Last visit a couple months ago, he told me I was a saint. He said "I'm a doctor and I treat these patients daily - where is my patience when dealing with them?" We had a nice long talk and I think he went away more compassionate - with both the patient and the caregiver.
He's really my step-son. His mother died of MS when he was in medical school. My DH cared for her until he had to place her in a facilty, where she died. Her MS steered him into neurology. So, the son went through part of this with his Mother and now his Dad. It's really hard for him too.
That's a great thing to do! Thank you for doing that!
I am perplexed as to why medical people are so... what's the word... unaware of what caregivers have to deal with.
Since my wife was Dx this year, the whole world of AD, in all of its aspects, completely astonishes me, not the least of which is our health care system and the fact that AD affects more than just the patient.
When the Neuro gave us the dx, his voice was breaking as he was telling us. When he said, after that pregnant pause, "Well, we can treat you", he said it almost in the form of a question. What I sensed from him is that, we really don't know what to do here for you and your wife. And from what I have seen so far.. they don't!
Even our primary care physician who has been our doctor for years and even longer for my wife, was just about running out of the room after he went over the Neuro's report. For him, I think it was just an initial shock, as he had not suspected my wife had AD, even though he knew she had been having memory problems. I'm sure it was the fact that she was young that made it difficult for him to think about testing her. It was the doctor who was treating my wife for post-polio that finally ordered an MRI last August. Even after seeing the MRI he was not convinced. So getting the dx must tucker them out so much, that they don't give the caregiver a second thought.
I feel that my wife and I were cast out to sea, in a leaky rowboat in stormy weather, and no one gave me a paddle. Oh yeah, and the world is flat!
Well done Marsh! We need more advocates out there.
Marsh, Thank you Thank you Thank you!!! I don't know if there is any other way for doctors to be reached unless its through someone like YOU that can speak from personal experience. Using the additional information that you've received from this site ,I trust is a huge help.. I want EVERY doctor to know and at least make some attempt to GET IT. My OB/GYN Dr. told me that his mother was having dementia like symptoms. He said, at first he would get really angry with her until he realized that she honestly couldn't do better. He said he had to go for counseling to help him learn how to accept this change. Even so, it isn't his WiFE..a parent is one situation, a spouse is another.. BUT any caregiver dealing with this needs to feel that the doctor is conscious of what these efforts actually mean. Way to go Marsh!!! Thanks again.
I would like to add my sincere thanks here, Marsh. When my DH was finally dx'd after 2 MRI's and a PET scan with dye, I remember the moment the neurologist told us it looks like AD with FL involvement. AD, I knew about as my mother had it at 84, but FLD? DH is only 68? I felt my world come tumbling down. I had to learn what to expect and do. The neuro suggested I try a support group. He said that this was the worst in "For Better or Worse". He is such a sweet and caring person, too. I went cold and numb and stayed that way for 6 months. Until I had to accept what was happening to us. Then depression hit, sorrow, anger, resentment, guilt...The doctors don't tell you about that. It's really not their fault though. They really don't know unless they have walked the walk. They need to know about the ongoing grief, too! Tell them, tell them, again please.
I am an RN who teaches almost daily to Emergency RNs and Paramedics. (mostly disaster and terrorism topics) But I also cover other topics.
One of my personal favorites is Geriatrics. (which NOBODY else wants to teach) I recently took Parkinson's out of my presentation so I could expand the AD segment. I have based a lot of it on what I have learned here. I figured this was most appropriate anyway because statistics show that there are/will be more AD folks than Parkinsons. (especially in the near future)
I also openly talk about my 58 y/o RN wife's MCI diagnosis to educate all our acquaintances. (many in medical fields) It was hard to talk about it at first but now the 'shame' is gone and we have both accepted things. I am 'happy' to 'show off' her deficits and let people know what ACTUAL AD looks like. ("I am 90 y/o and cant remember things like when I was 20, I must have Alzheimers.")
I remember back in the 1970s when Mary Tyler Moore came out and announced that she had diabetes <shock!> Now diabetes is commonplace and readily discussed. Pehaps someday AD will be also. When that happens non-AD people will eventually all understand.
I think the problem with medical folks and AD issues is that it is a long term situation and most MDs & RNs were never educated (or interested) in long term conditions. Since I started my career as an aide in a NH I have a clue and understand it a litte bit, but it was NEVER discused in my education. Who wants to learn about a incurable, debilitative condition that lasts forever . . . ?
Thank you marsh and m-mman and everyone else making efforts to teach the Drs., nurses, etc. It is a hard enough road to travel without having to battle with medical personnel who DON'T KNOW or have closed their minds to anything other than what they know. Until you connect with a Dr. who KNOWS and is open to concepts like "event driven test or treatments", and "the caregiver is the best tool he has for treating his patient" you work under a heavier load as you have to fight to get your observations and experiences listened too, let alone considered.
My best experience though, has been with a clinic which is researching my disability. The entire staff treats every patient, from the youngest to the oldest as a "member of the team". Our experiences with our disease, FROM THE INSIDE, are as valuable as their medical training and knowledge. Paired, we are pushing hard on the barriers to treatments. My own case has progressed beyond the chance to garner much recovery of lost ability, but if they can arrest it where it is, that'd be fine. I bet if there were a chance, at this time, to arrest the progression of dementia in our LOs we'd be after it in a second. If any reversal of deterioration were to become available that'd be a great step too.
It's a mystery to me, why so many in the medical fields feel the need to maintain their "I'm the Dr. here!" mentality when gathering all the information on the patient, from all sources, would actually let them be "the effective Dr. here."
I entered the AD experience in 1993, long before today's meds, message boards or a scintella of public awareness. At one time I had occasion to address some AD staff at UCLA and essentially said that as my DH's CG, I really don't much care if he can name 3 Presidents or count backwards when he's yelling at me about being unfaithful at 2:00 am. I like to think I made an impression on some of them and they took that to others. I'd pretty much had it, and came to the conclusion that everyone in the medical field should have a course in dementia--even if it's only for a few days, because everyone in the medical field will have to interact with it at some time or another. Non-AD medical people I had to interact with--the dentist, podiatrist, surgeon, anesthesologist, hospital nurses, even candy-stripers who didn't understand that DH could not unwrap the food they brought to him, could not find the call button or the bathroom, etc. I tried to explain, to educate, but most looked at me as if I was nuts, they didn't see 'anything' wrong! So I repeat, everyone in the medical field should have dementia education.
Tip of the hat to you Marsh. Would you consider traveling to Montana to educate a flock of very closed minded Dr's who happen to know everything? I won't re-iterate my experiences here as I've done so quite a few times already. However, as a career troubleshooter, I will say I learned some very valuable lessons about getting to a problem quickly and accurately by asking the person who is living with the problem 3 key questions. 1. What is the machine doing? 2. What is is supposed to do? 3. Is there anything else that doesn't seem to be working right? It helped immensely in my career and really surprised me how often I could solve something without even using tools. Needless to say, I marvel at how far from this technique our Dr's seem to be. For some reason, they seem to think they are supposed to know everything so don't need anyone else "telling" them anything. Joang - about a month ago you asked for ideas on how to get the word out and educate folks about this disease and the impact it has on folks. Marsh's approach seems like one heck of a start. Unfortunately, not being Dr.'s, most of the rest of us don't have the credibility. Maybe another logical approach would be to get Med schools to require a session similar to Marsh's in their training curriculum so no graduates get out of school without some "real life" exposure. Thenneck
Mandatory dementia training for medical professionals? It may come eventually.
On this board we all know what the future holds [people no longer die from cancer and heart attacks, instead they live long enough to become demented] especially as the baby boomers (my generation) find out that no mater how much they jog, eat healthy or do crossword puzzles a large percentage of them are going to develop the 'unspeakable'.
As the raw numbers of AD persons climb, a reason for teaching ALL medical providers about working WITHIN a dementia baseline will become self evident.
In paramedic and emergency care education they spend about 20% of the time talking about pediatrics, only 0.5% to 1% on geriatrics (never mind AD). While pediatrics is important, the statistics are shifting and 80%+ of EMS runs in LA County are for geriatrics.
Currently there is little interest in the topic because while it is 'heroic' to save a child, if an old person is not managed appropriately . . . . Well, so what ? "They were gonna die anyway. . . . "
m-mman ...... you have said it all in one sentence ........
<quote> Currently there is little interest in the topic because while it is 'heroic' to save a child, if an old person is not managed appropriately . . . . Well, so what ? "They were gonna die anyway. . . . " <unquote>
As I continue along this journey, fighting for every crumb of help tossed our way, I'm becoming increasingly cynical and thinking, as I observe those folks who take a wide birth around a demented for fear they will be touched and become demented themselves, here but for the Grace Of God go you ......
Alzheimers and Dementia, in all their varying forms, don't particularly care who they strike; they just reach out and grab the first available and pull them into their clutches.
Not only do the medical community need to be educated on the subject of AZ and Dementia, as it affects the immediate patient ...... they must also be educated on the over-flow affect of these diseases ...... it must be recognized a care giver of an AZ/Dementia patient goes through a post-death grieving every day while watching their loved one, still a live, breathing, warm and viable human being, slowly decay in front of their eyes ...... this is NOT a pretty sight, as we all know only too well. I personally think the only other disease, of modern times, that causes the same post-death grieving while the patient is still alive and breathing, is ALS as neither of these diseases have any hope of recovery or remission .... they are both a death sentence.
The medical community MUST be given a complete and total package of education not just education on the actual disease itself ...... although, today, even just education on the actual disease would be a start and helpful as I do believe it is a subject of little discussion and little time spent on learning about it unless one decides to specialize in Geriatric Medicine.
Lets face it ...... AZ/Dementia is almost becoming as common as the common cold and flu ........ so doesn't it follow those who are taught how to take care of the common cold and flu should also be taught how to take care of the demented??
THANKS MARSH ! ....... you've done us all a great service ........ are you available to speak in Canada :) ??
When DH was dx November 2007, the neuro asked me if I had all our legal papers in order. I said we did. Then he said "well, good luck." and that was the end of the visit. We had a followup call again in May 2008. Short visit. Told me our PCP could renew the prescriptions and DH didn't need to see him again unless there was an emergency.
Talk about being cast at sea in a leaky boat with no paddle. I was completely stunned. We received NO counceling, no advice, no nothing. Our PCP is a kind man but doesn't offer much. He did put me on antidepressants. Other than that, I've received all my knowledge from this site and the internet.
Now, that's a sad report. Thank you so much Marsh.
In Florida it is mandatory for nurses to take an Alzheimer course to renew their licenses. Unfortunately it doesn't get into the different dementias. Most PCP's also don't seem the realize that there are different treatment modalities needed. It remains up to us to educate the community. This site has given us the information to do it.
Someone needs to remind the medical community of two things.
All dementias a fatal diseases. It is not unusual for the caregiver to die first.
I've been lucky.
No fight to get a diagnosis. We were sent to therapy first and no one fought the therapist when she recommended a specific neurology group.
And for some reason I'm interacting with doctors who get it. The cardiologist immediately cancelled all testing. The dentist knew exactly what to do once he knew my husband had dementia and that he had stopped brushing his teeth. My therapist wasn't a dementia specialist, but had enough dementia experience that she also "got it" on the first try.
Alzheimer's Disease is a specialty just as surely as cardiology and oncology. It is absolutely vital that as soon as a problem is suspected, the patient be given a full and complete evaluation by a Memory Disorder SPECIALTY CLINIC. The neurologists, neuropsychologists, and psychiatrists at these facilities are experts in the field of DEMENTIAS. They are educated and up to date on all of the latest treatments and clinical trials. For a list of Memory Disorder Clinics in your area, go to the home page - www.thealzheimerspouse.com, and scroll down the left side for "Find a Memory Disorder Clinic in your area".
As in all speciality areas, some clinics and doctors are better than others, and some people have had bad experiences at one or another of these clinics, but word of mouth is the best reference, so ask your support group members, social workers, and the Alzheimer's Association for recommendations.
I agree that PCP's, nurses, hospital staff, and all medical personel, should be more educated in how AD affects the patient and caregiver, but they cannot possibly know everything about it, which is why a specialist in AD is needed. Also, it is important to remember that all neurologists are NOT experts in AD. They have sub specialties like ADD and headaches, so find the one who specializes in dementias.
Our original PCP sent us to a neurologist who had nothing to do with AD, and the neurologist sent us to a neuropsychologist who specialized in children. The neurologist diagnosed Sid with ADD, and the neuropsychologist wrote a report that said Sid's memory was waaaaay below normal, but she assured us he did NOT have AD, but she didn't know what caused his problem. The neurologist accepted the neuropsych. report, put Sid on Adderall for ADD (which made his rage and irrationality MUCH MUCH worse), and basically told us that the problem was me. The problem was me - for not taking Sid to the right doctor. That situation was remedied when we moved to Florida and found the right doctor and right clinic.
THANK YOU MARSH for doing your part to edcuate the medical community.
Like I said, the RIGHT neurologist in the RIGHT neurology group. It made all the difference. Especially in an area where they don't have a memory clinic.
Marsh, As others have said, Thank You! Hopefully other doctors will get the same kind of awareness in the future! The day my Dh was diagnosed the Neurologist looked at me and said I am worried about you, (Me) because he knows there are very few resources out there for people my age and younger, though they are becoming more aware of younger and younger diagnosis it still isn't as common. ( that was about his best bedside manner, other than that he is pretty stern and to the point) He said, there isn't a lot of support geared toward younger caregivers with early onset AD spouses which brings up a whole other set of issues. He was right. But hopefully by doctors getting a point of view from a caregiver awareness will become more common.
Guy, same thing here. It was finally my Dh's Post Polio Doc that got the ball rolling as to finding out what was going on. Other doc's wouldn't even consider or didn't even think of it or blamed it on the Post Polio. I sooooooooooooooooo feel for people who have even younger spouse that are fighting for answers but because of their LO's ages it takes longer.
Thanks for enlightening the primary care physicians, as they are typically the first point of contact when problems start.
There is a big push now for early diagnosis and to educate primary care physicians about Alzheimer's disease. I heard a quote recently that less than 30% of neurologists recommended clinical trials to their newly diagnosed patients.
My husband and I were recently interviewed for a "teaching tape" to be shown to primary care physicians starting next year as part of their continuing education. There will be several others including an older spouse who recently lost their loved one to AD. The goal is to educate doctors so they can diagnose early & enlighten patients on clinical trials, and direct families to some type of support group.
There isn't enough time in medical school to teach all they need to know about AD. I know I was taught about it in ned school and even wrote a paper about it. That was a joke compared to what it does in real life. I cannot find any source better than this website for learning the real AD symptoms. It is so subtle and so complex it will continue to be a learning experience for each of us for years to come. What they need to learn is to believe the caregivers and just listen to them. Have the compassion and understanding to know that when they ask for help, they need it. There should be a website that every physician can access and get the information the families need, be it support groups, clinical trials, latest medications that work, basically one stop shopping. Then give that website to each family that even asks about AD
Sandy - that's what we're trying to make THIS website into. Or maybe, Marsh or Sandy, it would have more creds if we had a "FOR PHYSICIANS" section!! I have given its web address to every MD I've been to lately, even given the keychain to the neurologist - and HE even went, while I was there, to look it up, make sure he had it right... I think many of them WANT to know, but just are busy and harried and unwilling to face terminal illness! THey want to HEAL people, dammit, and there's no magic bullet out there that will do it!
I am also lucky! Our PCP is a PA and truly understands. She and her husband were caregivers to her mother-in-law. My DH is mid to lateish stage 5, and very cranky at times. He refuses to take his meds or go to the Doctor. When I was talking to her recently and was at my wits ends...I asked her what will I do when he gets worse and won't go see her. She made my day when she looked me striaght in the eye and said, "I will make a surprise house call". It took a load off my shoulders.
I was positive I posted on here last evening. Hmmm?
I was saying.....on our last visit my DH's neuro sent DH out of the room with the RN to do a mini-mental exam with him. Then he closed the door, sat down and talked just to me.....only about me. He wanted to know if I'm getting any respite, and emphasized how I deserve and absolutely NEED, for my own health and well-being, some time away from the AD. He is a fellow of Neurology, and instructor in Neurology at Oregon Health & Science University. He only comes to our town something like once a week. He also does semi-annual seminars at the Alzheimer's Residence where my father resides (nurses can take it for CEU's, and its open to caregivers and other interested persons). I've been told that his grandparent(s) had dementia and his parents were caregivers, so he is acutely aware of the stresses. I think we hit the lotto when we got this doc. Took six months to get in to see him, even with physician referral.
I send out monthly newsletters and press releases about whatever is new on the website. Maybe if one person from each state could send me the e-mail addresses of a few neurologists and PCP's in their area, I could put them on my mailing list.
My pet peeve . . . This whole AD thing will need a new definition to advance within the medical community.
Diabetes - at one time there were two types "adult" and "juvenile". These names were applied early on when Diabetes was barely understood.
At age 55 my grandmother suddenly developed 'juvenille' diabetes. I was 8-10 years old and my vocabulary was slowly expanding. I learned that 'juvenille' meant 'children'. I just did not get it! How could grandmother get a child's disease at her 'advanced' age? Her doctor could not explain it and said that her condition was some how abnormal.
Today the names are type 1 and Type 2 diabetes (insulin dependent and non-insulin dependent - i.e. pill controlled)
Today it is readily understood by all PCPs that some older people will see their blood sugar rise and need some form of treatment. Pills are always first but sometimes the pills dont bring the sugar level down enough and the patient needs to take injected insulin. It is all about controlling the blood sugar level NOT the age at which it develops.
My DW is 58 and has MCI. I guess she would qualify as EARLY onset AD. . . ? What is the definition of EARLY? Well I guess that if the diagnosis & symptoms come on before age 65 it is somehow 'too soon' ????
Well what is the problem with this (Alz Assoc supported) name that angers me? (And does a disservice to EVERY ONE of us?)
Here is the problem: If AD symptoms before 65 are 'too early' then dementia symptoms AFTER 65 are ON TIME!!!! This is NONSENSE!!! This is AGEISM.
This thinking is what leads MDs to write off 'old dementia patients' as being some how normal.
Dememtia is dementia. Like high blood sugar it need to be recognized as the same incurable BUT MANAGABLE situation as diabetes is.
Diabetics were once seen as incurable and written off. (then we learned more)
Doctors are inheriently scared of incurable diseases. Only when dementia is eventually seen as a MANAGABLE condition can there be treatment goals and hope for improving things. (even if improvment only means easier behavior management)
Dementia IS NOT an old person's disease, it is a condition that happens to ADULTS and like diabetes needs to be seen not as incurable but MANAGABLE!
We all hope for a miracle cure but we also know it aint gonna happen in our lifetimes. Forget the pathology, the goal should be making the behaviors manageable and getting society to understand and tolerate the behaviors. That would make a caregiver's life easier and maybe the old friends & family wouldn't run away so quickly from our LOs.
Again with the diabetes comparasion, medical practioneers all readily understand that diabetes is NOT just about blood sugar (as was once believed) but it leads to blindness, kidney failure, amputations etc.
"WE" (including all the Alz organizations) need to shout to everyone that AD is a contition that is unlike ANY OTHER condition in that it affects TWO PEOPLE! (patient and caregiver) When that happens then more PCPs will do what New Realm's doc did. (gold star for him!)
Ok, I'll get off my soapbox now but if we want to seen changes within the medical community this is the direction I think we need to go.
Sandy D, there are web sites that are excellent, that every physician can access ... they just don't.
There's the Alzheimer's Association, which is full of excellent info, and has a huge membership in its discussion forums. There is actually a forum for the healthcare professional, but I've never seen much activity on it. (There have been 161,323 posts on the Caregivers Forum, and 712 on the Health Professionals Forum ... and most of those are by caregivers.)
http://www.alz.org
Then there's the Alzheimer Research Forum, which has all the latest about diagnosis, treatment, clinical trials, etc. They don't have a caregiver discussion forum, but they do have a bulletin board where researchers can post if they need research participants for their studies (or special materials, or collaborators.)
http://www.alzforum.org/
I think Spouse fills an extremely important niche, because the emotional, financial, and legal issues are so different when it's your spouse. Several of us post over on the Alz Assn forum, but we get lost among all the people who care for parents and grandparents. There are sometimes attitudes about the ADLO that bother me, that I don't see here on Spouse. And there are certain topics that are difficult to discuss over there, or can be misunderstood. (Just try posting about how to find ways to protect your assets when you have to place your spouse ... you're very likely to get comments about robbing the poor taxpayer, and you should pay your own way.) It's my understanding that the Alz Assn helped Joan set Spouse up, because they recognized the need.
But we would be very hard-pressed to compete with either the Alz Assoc or the Alz Research Forum to provide the high-quality medical information that these sites offer. They have donations that we don't, and large staff, to do the analyses and keep up with advances. I think we should stick with what we do best, and that is, help spouses cope, and provide links to other sites or articles that we've found helpful.
m-mman, there is a big distinction between MCI and early-stage AD. Some MCI patients never progress to AD, and some actually revert to normal. I was surprised that the rate at which MCI converts to AD is actually relatively low. Our newest member, td, posted a link to a presentation at Columbia on MCI which you may find very interesting. It's a new thread, "Grand rounds at Columbia."
You are quite right that the term "early-onset" is arbitrary and needs to be reconsidered. Some organizations are struggling to get people to use early-onset familial AD (eFAD) used instead of early-onset, to mean those people who have inherited a gene that will cause AD, period, and at a young age. Anyone else has "sporadic" AD. But early-onset is so entrenched, it's an uphill battle.
With all due respect, there are other diseases which affect the caregiver as well as the patient. Some of our members here have spouses with Parkinson's. The motor symptoms are difficult enough to deal with ... but a relatively large percentage also develop dementia. There are other dementia syndromes that are more difficult to deal with than AD, such as FTD (which usually strikes younger patients) and Lewy body dementia. The husband of one of our members (Kitty) has a dementia syndrome caused by radiation and chemo treatment for lung cancer. Those of us who have nursed spouses dying of cancer can tell you that the stress from that is very disabling, even when the cancer did not metastasize in the brain. Many spouses die from it. I have a dear friend whose son is dying of ALS. And I rather imagine caring for a LO with a psychotic disorder is no picnic. The list is endless.
I think that, when trying to get the attention that dementias need, we should be careful not to downplay the misery that other disorders can cause.
I have found that our drs that have actual personal contact with family or friends who have LO with AD are more willing to offer help to the caregivers. in my case, our neuro has family with AD and always ask me if i have help to be able for some time out. at least hes asking. i am sure if i needed any meds for myself or wanted something for my DH to get him thru some issues he would certainly step up and do what he could. now the OTHER neuro i had before quite horrid frankly. an emminence?SP in his field but no compassion, just delivered the diagnosis and sent us on our way with a follouwup in 6mos...nothing. i am glad he retired and i was forced to find another which is much younger and seems more 'into' what the new resources for AD are about. if you dont like your dr find another asap. they are NOT all alike..some much better than others, whether they are specialists or not. divvi
Nope. The Alz. Association had nothing to do with setting up this site. The idea came to me one night when I couldn't sleep, and just about ALL of the credit goes to Joel, my techno. whiz son in California. I called him and told him of my idea, and zingo, next thing I know, he sends me a template, web design software, and we were off and running. He has taught me everything I know about the technology of maintaining a website. The Alz. Assoc. is on my contact list, so they get my e-mails and press releases when I announce something new, but other than that, they basically ignore me.
Thank you to everyone who gives this site to physicians - There are so many physicians, so many specialities, so much to do - they couldn't possibly keep up with all of it. Dementias of all types are becoming epidemic, so there probably should be a mandatory professional development course for all physicians - kind of a sensitivity training in how to deal with dementia patients and caregivers.
I send them to everyone in my e-mail address book, so you should have gotten yours today. If you didn't, let me know, and I will e-mail it. PDF?? When Joel comes to visit in January, he will show me how to do that - haven't learned that one yet.
I got mine. Joan, didn't you say you don't have any of our email addresses unless we send an email to you? Maybe some others will send you their email so they could be included.
Joan. I remember well the posts and emails from you talking about wanting to get this site going, and polling alot of us spouses regarding the need for our "special place." This is it! Ugh! Seemed like it couldn't come fast enough. I actually was afraid the admin. "over there" was going to get annoyed and admonish you for promoting a "rival," or a mass defection. LOL. But they didn't offer a special forum board either, huh.
Joan, I haven't ever received one from you. And you have two of my e-mail addresses. Help! Should I send you a quick e-mail so you can find me? I had asked you to send Bluedaze my e-mail address as well. I know you are snowed under.
My husband's neurologist has been telling all spouses about Joan's place for almost a year now. She gives them the website so that they can learn from everyone here, especially the newly diagnosed. I would love to send her the newsletter.
I sent an e-mail to Bluedaze about the newsletter because she asked for it also. I have not been sending it out to those I know read the website regularly because I figured they already knew what was going on here. However, Bluedaze said that she wanted to give it out to others in her community. Since I had never thought about that, I will now send it out to everyone in my address book. I do it almost every month.
Sorry, Joan. I thought I remembered reading somewhere that they'd given you encouragement and helpful tips, and that they let you conduct polls and "advertise" the launching of Spouse on their site, even though they don't usually allow that kind of thing. Must have been hallucinating. (Probably part of caregiver dementia.)
...Unless someone said something like that during the minor skirmish we had "over there" when one of the regulars objected to anyone recommending other discussion forums ... that could be where I got that idea. Admin over there made it clear that anyone who wanted to recommend another site could, and removed the threads containing the skirmish.
I guess this is as good a place as any for this comment. Tonight I talked to our local Rotary Club on AD from the Caregiver's Point of View - a modification of the talk I have given to doctors. They seemed very attentive and interested. We didn't have much time for questions since a snow storm had moved in and everyone wanted to get home. Several people thanked me for giving the talk. One said "giving that talk took balls!!!!". My wife was present and several commented on how she seemed to be following the talk and nodding in agreement as I made comments. I'm sure she had no idea that what I was saying pertained to her. I ended the talk with several suggestions on how they could be of help to the caregivers, mainly by giving them emotional support.
That was great Marsh. The fact that your are your wife's caretaker and she was there with you is bound to have some effect on them. I bet there was more than 2 at your meeting that either has early AD or has a spouse with it or a parent.
One man just lost his MIL to AD. Another has a wife with VaD and a retarded daughter. About 1/4 of the group said they had a close family member with AD. I was interested that when I asked how many in the group knew of someone with AD only about 1/2 raised their hands. I think they were a little surprised when I told them that my wife had it.
Marsh, thank you for spreading the word. You are one of the mainstays here and we are so glad that you are a part of our group. It takes a lot of courage and fortitude to speak in front of a group and have your spouse in the audience. Bravo!!!
you go Dr Marsh!! i know my dr son has a different take on AD after seeing what its done to his stepfather..and his mom-thanks for spreading the word.Divvi
You go Marsh! That is terrific, As a matter of fact you have given me an idea. I work at a university in NY...and I really think I'm going to try and give a talk about the same things. As we all must know it helps so very much just to even talk out loud to another human being about our life.
I don't have any "balls" but I do have ovaries!!!!!!! :)
I spoke to a large group a year or so ago and my husband was in the audience. The topic was what it is like to be an AD caregiver, what needs to be done to help us, and of course, I gave some background on S.'s situation, difficulty of getting a diagnosis, etc. I was a little concerned because he had never heard me speak publicly about his illness before, and this was before about 100 people, but when it was over, he was clapping with everyone else. When I came back to our table, he said "Good job, Honey", so I know it didn't upset him.