Hello all, I should have written this before but have been overwhelmed with well you all know.....life with AD.
I am giving a 30 minute talk on Sunay (Alzheimer's: Myths & Realities) at my church with 10 minutes for Questions.
First, what would you all like people to know about AD?
Second, I'd like to use some snippets from postings on this board mostly from the threads about DX and "what can your LO still do?" I will of course not use any times and edit them so that they could apply to most of us and not be identifiable to any particularly person. I WILL ALSO NOT MENTION THEY CAME FROM THIS SITE BUT THAT THEY ARE EXAMPLES FROM REAL PEOPLE.
My premise is that we think we know what AD is like but what most of the public not living with it think is the stereotype of forgetting, getting lost, and wandering. This is of course why so many people are surprised, and sometimes even argue the fact, that our LOs have AD as they are able to "pass." I read somewhere on this board that people can often pass up until the latest stages.
So, please post some things you'd like people to understand about AD. And Joan and the rest of you reading this, please let me know it's okay to use some examples from this board. It's so much more powerful for people to hear concrete things the person with AD can and can not do than to say they have aphasia, are forgettingful, etc.
I'm focusing this talk on AD not caregiving except tangentially. I have stated if there is interest I'd like to give another talk later, perhaps bringing in some other speakers, focusing specfifically on caregiving.
Also, I meant to mention. I want to use some examples outside my own experience because I don't want people to get bogged down in feeling sorry for or worrying about me.
The thing that a lot of people seem not to know is that AD is fatal. So far, what's been hardest for me is the change in my husband's emotions. For a while he was getting very angry with me, but we got that under control with medication. But he has no particular feelings towards me or anyone else. He doesn't sympathize, show affection unless I initiate it, express concern, etc.
AD is mis-named as a disease of forgetting. Everyone forgets something sometimes. AD is, more accurately, a disease of progressive brain cell failure and no one yet knows how to stop or prevent it. We cannot look at someone and see brain destruction, we can only react to the bizarre consequences. As cells are destroyed it causes problems with memory, thinking and behavior severe enough to affect work, relationships, daily living, like bathing and eating, and more. The brain controls our senses. With vision, for instance, they lose depth perception so driving is dangerous. Often, they don't recognize faces or other common objects because cells that control vision are askew. Brain cells control blinking, swallowing saliva, circulation, heartbeat, breathing, etc, and everything eventually becomes affected. The healthy brain has 100 million cells all sending and receiving messages. When cells are damaged, signals are sent off into nowhere, they are garbled and short-circuit. That is why it only frustrates someone with AD to try to reason with them, argue, drag them back to your reality--instead try to be KIND. They are not pretending, they can't help it.
I hope this helps, what you are doing is a great opportunity, good luck.
That dementia is not always an elderly person's disease. My husband was 50 years old when he started losing his memory. Some dementia patients are even younger.
Please let them know that the AD patient LOOKS NORMAL and can ACT normal until the final stages. Accept the caregivers words and do not bother to LOOK for symptoms.
Their personalities change and they create a difficult atmosphere for the family members living with them.
They become compulsive with some of their behaviors.
Some go on shopping sprees; others give everything away.
Some wear multiple layers of clothing; others try to go nude.
THE REASON BUTTON IS BROKEN. You can't reason with them, or correct them (without upsetting them), or expect them to remember rules, or what youve told them because you have no idea how long they will be able to remember.
And broaden it beyond Alzheimer's to Dementia, just briefly mentioning that although the causes and the progression may be different in different types, they're all dementia and none of them have a cure.
I would echo what Kadee said about it not being just an "old person's" disease. And also, that it doesn't always progress slowly over 10-20 years. Once someone is diagnosed they can progress quickly, from being forgetful and "foggy" to having speech problems, to losing the ability to speak in any meaningful way, or to walk, or feed oneself, all within a few years. My husband was diagnosed in Sept. 2006 at age 52. He was still driving, and could communicate and care for himself. Today, he is completely helpless, dependent on nursing home care, unable to dress or feed himself, and on a pureed diet.
--Few other diseases impact TWO people's lives so significantly (patient and caregiver)
--Cost of care is so high and not covered by regular health insurance/Medicare
--As stated above, not just a disease of the elderly
--Not only is it fatal, there is no proven way to prevent it, and no medications available that affect the disease process, no cure on the horizon (all the news reports and commercials for Aricept are misleading)
The flyer I pass out wherever I go is still on the home page - www.thealzheimerspouse.com - under the blog about World Alzheimer's Day. Since I wrote it, it is copyrighted as is everything I write on the website. You are welcome to print it and distribute it everywhere, but the website name must be included under copyright law. Here is a copy:'
DISPELLING THE MYTHS OF ALZHEIMER’S DISEASE – IT IS NOT JUST A GRANDPARENT’S DISEASE.
Everyone is at risk for Alzheimer’s Disease, not just the elderly, and it is not a simple memory problem.
Being aware of 4 simple facts about Alzheimer’s Disease can extend the quality of life for patients and caregivers. The Alzheimer Spouse website, www.thealzheimerspouse.com wants to raise awareness of the disease by dispelling the myths of Alzheimer’s Disease. Physicians and the public need to know:
•Alzheimer’s Disease is NOT normal aging. If the doctor dismisses concerns, a neurologist who specializes in Memory Disorders can be found in any area of the country by logging onto www.thealzheimerspouse.com and clicking the “Finding a Memory Disorders Clinic in Your Area”.
•Alzheimer’s Disease is NOT simple memory loss. It is a BRAIN DISEASE that destroys every part of the brain – behavior, personality, cognition, comprehension, physical abilities AND memory. It is 100% FATAL. There is NO CURE. There are NO SURVIVORS.
•Alzheimer’s Disease is NOT EXCLUSIVE TO THE ELDERLY. Early Onset Alzheimer’s Disease affects men and women UNDER the age of 65, and many in their 40’s and 50’s. It is misdiagnosed as everything from depression, stress, early menopause in women to Attention Deficit Disorder. If you think your loved one has possible dementia, regardless of age, contact a Memory Disorders Specialist for comprehensive testing.
•Aricept and Namenda can help with the symptoms and stabilize the person with Alzheimer’s Disease, for up to 2 years, but they CANNOT CURE IT. THEY CANNOT STOP IT.
The spouse of one who has AD needs to enlist the assistance of an elder care attorney asap to protect what assets they may have as this disease can break them financially. And some people may not be eligible for medicaid ( medical in CA) or Veterans benefits if they make too much money..and even then these people can end up broke.
Also no two people present the same way, the progression for people is not the same either..some are slower than others.
People who see changes in a person often to not mention anything to the spouse who is often the last to know..be aware of changes...my DH got my attention when he was always looking at the paper several times a day for date and day. I thought it was his vision, not being able to see the calendar across the room on the fridge. After all the tests were run we and were normal we got the "word".
And one of the hardest things of all is the way friends fall away...just drift off....The person with AD needs more stimulation than what just the spouse can provide and while able, friends should continue to take them out for coffee or a game of golf even if they have to help them tee the ball up or get the coffee..they come home happy to have had an outing..later they will not be able to do these things.
The driving...they think they can drive and while the skill may remain they are likely to get lost.. there are many things they think they can safely do but they can't.
Thanks to everyone so far. These are great! As for the early onset, I'm 59, DH is now 67 but was 64 when DX and much younger when symptomatic, so I'm a real life example in the pulpit for it not being an elderly disease.
I so value having these comments in your own words. This makes a greater impact.
I was planning on using some of the book which was the most helpful book to me bar none and that's Daniel Kuhn's Alzheimer's Early Stages. I was able to DX DH myself from reading this book and it's a good thing too as I then told DH what I thought the neurologist was going to tell him the day before the neurologist told us. I'll never forget the chilling way he told us. "You have dementia. There is no cure. It is probably Alzheimer's. I'm giving you a prescription for Aricept." THE END. Nothing about alzheimer's association, where to go for information, etc. Luckily for both of us I'm big into research so I had already started that process, but what if I hadn't been??????
Kuhn has a chapter in his book titled WHAT IS IT LIKE TO HAVE ALZHEIMER'S. I'd really appreciate anything you all can share of thoughts that came directly from your LO. My DH barely talks about it but is super aware of his deficiencies and that he is declining more rapidly now. I have Tom Debaggio's book about his experience with AD and the memoirs of some others with AD or other dementias, but would love to have whatever you all can share.
Thank you again. This presentation was to be mid to late October and they asked me if I could move it up so I have less time than I thought.
BTW, we have lived in this tiny tourist town for three years now. People are always saying they don't notice anything. A good friend though had DH over to help her with a couple things in her yard and she called me afterwards saying "I don't know how you do it? It was so difficult trying to explain to him what I wanted." Generally I've noticed that people just don't really pay that much attention or listen closely in general. If they did they could hear that although he talks the content is basically empty. Unless he's conbfabulating in which case the content is mostly not true.
I got the same type of thing from the neurologist. Needless to say, we left that one and found a wonderful doctor that specializes in memory disorders. Much better service, information and all around care.
The disease is about more than one person. The person that has it and the effects it has on their spouse and family. Like any major illness, this disease affects the whole family. The main difference is that the person with the disease will hit a point where you can no longer get their input on what they want and are now on your own making decisions for them.
RESOURCES: In the announcement of my talk I said I would shares RESOURCES available. I'd love recommendations for this also, particularly for those in more rural areas.
Believe it or not the biggest thing that I would like people to know is that Alzheimer's and dementia are not two different things. Alzheimer's is a form of dementia. I don't know how many times I had to (or felt I had to) convince people, professionals and lai people alike, that just because he has dementia doesn't mean that he is not as bad off as someone with Alzheimer's. Most people still think they are different and alzheimer's is worse than dementia but the truth is that alzheimer's is a form of dementia and it took me a while for people to take me seriously because "Oh! he only has dementia? at least it isn't alzheimer's that would be much worse." Of course now when they say that I ignore it or if I think they will listen to me I tell them the truth but at first it was very irritating.
We did not know what was wrong with my DH. We thought it was stress. We lived in the same house for 30+ years, he had the same job for 32 years and we did the same things all the time, went to the same places to eat, etc. We had no idea what was wrong until about fall of last year it got really bad. So a person can have it and still get by. My DH was 58 when dx.
So it can be coming on for a very long time before you even know it is there.
What does my DH say about havind AD? That he is fine, doesn't hurt anywhere, could not feel better. And there is nothing wrong with his memory. He does not recall he had a TIA nor what all the meds he takes are for...but he is peachy keen the picture of perfect health.
bluedaze, terrific. I'll read tomorrow so I'm not up sobbing all night. Mimi, that's great. I intend to mention that some are aware and some not. I love your answer. The specific individual answers are so much more powerful than stats.
deb, for sure. My DH has probable AD or possibly FTD. In the description of my talk it mentions "dementia is soon to hit epic proportions" and the title of the talk is Alzheimers: Myths and Realities.
I am so glad to have the opportunity to do this and hope they'll let me do a follow up in a couple months solely on "caregiving." A couple years ago I was on a panel on Early Onset AD at the Ark/OK chapter of the AD Association meeting which was before 100-200 people in the medical and caring professions field. I was did not strictly follow a script (which I intend to do this time) and went off on a tangent about the way the neurologist told us of his diagnosis (see above). An RN in the audience asked what I would recommend as a better way of handling this. I was thrilled someone cared enough to ask and just wish there had been more than a couple doctors in the room.
1. Dementia is fearfull. If you talk about it people may not want to really listen because they dont want to think they might have it. If you are concerned about yourself go to the AFA website and search for "National Memory Screening Day". Find a location near you and get screened. Then you can be assured that you are OK, or might need follow up with an MD. You get your blood pressure checked at a health fair day. Get your memory checked too.
2. Job incompetence is a MAJOR early sign of younger onset AD. If your loved one suddenly cant perform an occupation they have excelled at for decades, GET THEM CHECKED. This is not seen as much in later onset AD because a retirement lifestyle does not have the pressures to perform daily that an occupation does. An early stage person can more easly cover their losses in retirement.
3. It is fatal and the chances of a "cure" are virtually non-existant. It is a bio-cheimcal disorder that makes serious changes in the function of the cells in our body that are the most protected and the most difficult to reach with medications. (see: blood brain barrier) Do not wait for a 'cure'. Remember diabetes has no cure, YOU LIVE WITH IT. The key to 'surviving diabetes is early detection and management with medication to keep the enevitable symptoms at bay. All the complication of diabetes will happen eventually, good diabetes management just keep them less likely while maximizing your quality of life. People accept these concpets with diabetes but they are 100% applicable in AD too. Early detection, early diagnosis, early intervention TO PRESERVE FUNCTION.
4. As AD 'eats' away at the brain it attacks some areas, while others remain functional. Stories you can tell. My 60 y/o wife (Symptoms started at 55 - quit work at 57) - Her calendar is broken but not her clock. Everyday starts the same way. Telling her what day it is (Sun, Mon, Tues, etc. ) and outlining her schedule (Church, Cat care, Senior lunch program) She can read a watch and get to each event on time but she constantly resets the date on her watch because "it is not correct". We get calandars in the mail from charites - She will remove the calendar form the wall and replace it because she guessed that if the charity sent her a new the old one was finished. (even if it is next year's calendar)
She still drives safely (gasp!) I test her weekly - and she can navigate BUT . . . . . . . . Her vocabulay is disappearing. The thoughts are there but the words are leaving.
The other day she wanted to go out to dinner. After a few minutes of charades and guessing I figured out she wanted Mexican. Ther are 4 local Mexican places - Which one did she want? "The one near the parking lot and the store . . . . " "The one up at the corner . . . " "You know the one we always go to . . . " "The one that has the stuff I like . . . "
Finally I said "Can you drive there?" She said "yes" So we got into her car and she drove directly to Taco Bell and was very happy, it was exactly what she wanted.
Living with an AD person calls on some major changes in how you interact with them. To be successful you need to learn all you can about AD and identify exactly your LOs deficit and help in those areas. They may remain perfectly capable in other areas. Too little or too much help in the wrong areas can make things worse.
When I was a part of a presentation a couple of years ago, one thing that surprised me was that people had no idea how long this disease lasted. They thought it was a minor problem for the patient and the family for maybe a year. They were shocked that someone would need so much care—for so many years. I was really glad to have even a few people realize the true scope of this disease.
It is really important to NOT use the word Alzheimer's. Please use the word dementia.
The most important symptom of dementia is how it changes how the person acts. We can deal pretty easily with the fact that they don't remember, but trying to deal with how they act is much harder. That is true from the repeated questions in the early stages to the physical acting out in the later stages.
And yes, please tell them that ALL DEMENTIAS ARE FATAL.
I have no problem using the word Alzheimer's Disease in conjunction with educating others that there are other types of dementia as well some caused by other conditions. The population needs to know that there is a difference between them. And yes, folks need to understand that this disease is not static, it is progressive, fatal and for some of us we are left broke financially.
My husband's doctor's talked about how important socialization was for him and was constantly pushing me to socialize him more. So, socialization is very important in the early stages but don't forget that socialization is very important for the caregiver too. I do so much better when I am interacting with other people. It really helps keep my spirits up.
Having your LO socialize is fine as long as they don't come up with paranoid ideas about the people they have spoken to, which is what my DH does. I'd just as soon he didn't speak to too many people. He has always been kind of a loner so it doesn't bother him to not be around people.
My husband's neurologist told me the same thing about keeping my husband social. For that reason, he told me I should have him attend day care. I told the doctor I thought it was too soon and he wasn't that far advanced. He gave me that look that said "denial" and said that yes, he was ready and I should look into it. He even gave me names of places to go for financial help. I'm glad I listened to the doctor. Day care has helped my husband do more than just sit in the house and given me time for myself. I really enjoy those few hours.
I agree w/Starling. For me the most important thing is not hb's loss of memory, but the change in behavior and abilities. Also the public should know that there's no cure for any dementia--it is fatal.
I am overwhelmed by the outpouring here. This is wonderful. I feel very lucky to have the opportunity to speak for us all and intend to get all the messages you all want others to know out loud and clear.
There is one thing though I'm not sure I understand. I'm hearing in this thread some of you saying you want people to know this is a FATAL DISEASE. I will for sure mention that. However, I'm confused as to why it is coming up. Are some of you encountering people who think it can be cured? Enlighten me please. Are there specific encounters you could provide so I could better understand where this is coming from.
A friend from CA e-mailed me: Is "hb" improving? Friends in the community, Is "hb" feeling better? No, he's not improving, and he won't. Some days he seems to feel better; some days he doesn't. In his case, it began w/gradually going down the slippery slope; now it's more rapid. I think most people don't understand that eventually a person w/dementia can't walk, take a bath, comb their hair, shave, shower, feed themselves, swallow, breathe.
I think the most used "cure" I have had suggested to me is Ginko Biloba(sp) I guess it comes from people thinking that it is only a matter of memory loss. Even the herb that his doctor said(Milk Thistle) is not a "cure" It is not that we don't want a cure because we do. If there was one don't you think that we would be using it(I feel like saying)
terry--IMO it's important to us to stress the severity of these diseases and their effects because the public DOES NOT KNOW this. They are used to the concept of treatable diseases that people recover from or that they can live with. Cancer even has become one of those in a great many cases. If you think about it, comparing the prognosis of many other diseases 100 years ago and those same diseases now, the Dementias are close to being, if not being, the only ones which still have no cure and nearly no treatments.
The husband of a good friend at work was diagnosed with pancreatic cancer ~5 months ago. She is also an RN and while navigating him through his treatments, she knows where it is going to end. She also knows all about my wife.
We have talked about how we are both in the same boat but; win, place or show her experience will be over in about a year, maybe two . . . . . . . . while my jouney is going to last ~20 more years.
We have talked, we cant decide who is 'luckier'. This is what most people dont understand.
Terry, I believe people should now how often AD strikes. I believe one commericial states that every 72 seconds, someone is dx with AD, and it is on the increase. A lot of people think it is one of those rare diseases...it is not anymore! And...it can happen to people from all walks of life. No one is safe, just because "it doesn't run in your family".
It is almost as if people don't make the connection. They see our spouses in the earlier and mid stages when our loved ones can present as being reasonably okay and can still interact somewhat with others.
Many people have, at some point, visited in hospitals or nursing homes and seen patients with end stage dementia. Or at least they make reference to being aware of people in nursing homes ie I wouldn't want to end up like that when I get old. Yet somehow adding one plus one doesn't equate to two. Why?
Is it because some people tend to draw away from socializing and supporting those with dementia as they slide into later stages? So seeing or knowing about end stage dementia isn't as personal because people don't bother to visit much with those who have dementia during end stages . . . Maybe it is also our culture's general discomfort with anything that involves brain health gone awry. People with mental health conditions also experience similar misunderstandings and lack of support and live with their conditions for years. Caregiving support isn't easy in those situations either due to needing to be there for the long haul. Many people don't realize that mental health conditions can be fatal (not as high a percentage as with dementia but still higher than for many other conditions).
I think the misperception that dementia isn't fatal goes hand in hand with the erroneous belief that dementia only affects the elderly. So, most people think that when a person with dementia dies, it was due to their advanced age and other medical conditions. Only recently have obits begun showing, for example, "complications of Alzheimer's Disease" as the cause of death. And most people have never met anyone under 65 with dementia.
marilyninMD, I think you are so right. I can not tell you how many coworkers of my DH have told him how lucky he is to be retired and able to enjoy his life! Lucky, my foot. I can not believe how clueless people are. Now to be fair.....before my DH dx I was one of the clueless.
Ok I get it but not sure I've encountered it or have been aware. One thing I do get which drives me NUTS are all these suggestions for various ways to stave off AD or improve the conditions by various herbs and other treatments or eliminating oen thing or another from the diet or adding something in or staying away from aluminum. It's endless. Last week I got three emails from someone who is afraid of getting AD as it her aunt and uncles had it so she's about to start taking cumin and wanted to know if she should make up some capsules for Hal. I'm finding it harder and harder to nod politely.
All the different "cures" and advise remind me of all the ideas when Polio was ranpant. But recently a lot of medical people are trying to enhance these "cures" with all the publicity they get. I think this stirs a lot of people to share this with AD families. It is like they are telling you this, and it works! Just as the Aricept ads are leading peiple to believe that is is a cure.
I had the "this disease is fatal" conversation only a couple of days ago with a very kind and caring neighbor. I had it with a dentist's office manager, and she handled dealing with my husband beautifully and she still didn't understand that he was dying. The office manager really surprised me because she knew exactly what to do to make a demented patient calm.
Most of the people I deal with do understand the disease, and it always surprises me how little of this kind of stuff I have to deal with compared to a lot of the folks here on Spouse, but even I end up having the All Dementias are Fatal conversation.
Oh my goodness. I just spoke with my mother on the phonne. I told her how surprised I was how many people said they wanted the public to know that dementia is FATAL. She responded "I didn't know it was fatal."
So I've just assumed everyone knew this and somehow it hasn't come up in conversation.
VERY BUSY putting this talk together right now - and looking as is usual for me - any excuse to drift away from the work, so I'd best go for now. Will be checking this thread during the day for any additional posts. And thank you to all of you for your responses. Will keep you posted.