My friend in Ohio called lastnight and we had a nice conversation. She asked how DH was and I told her some days good and some days not so good. She then said "You don't die from Alzheimer's". I told her it was a fatal disease and that there is no cure. Today I have sent her an e-mail with an article about Alz. being fatal. I hope she will read it and pass on the message about it and that there is no cure. Maybe it will educate some people.
Personally, my mantra is "All dementias are fatal" because my husband does not have Alzheimer's and he is dying from his dementia.
You did good. I've passed around information too.
The most shocking one was an assistant/office manager in the office that was covering my own dentist when my husband needed work. They handled him beautifully and knew just what to do, but she did not realize he was dying. We talked a bit and she WANTED to know what I could tell her. So here was someone who was caring, and she STILL did not know what she needed to know.
I forgot to add to the above. When my friend said you don't die from Alz. I told her when someone dies from cancer they always put pnuemonia first. When one of my brothers died from bone cancer they had listed two other causes before cancer. I also told her there were different kinds of dementia but they all have the same outcome.
I think I put this in a blog somewhere. It was the flyer I handed out at our fundraiser, and I sent it out to a variety of organizations. What everyone needs to know about Alzheimer's Disease:
. 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.
• For more information about Alzheimer’s Disease, log onto www.thealzheimerspouse.com
My husband's death certificate lists the cause of death as Frototemporal Dementia. He fought the battle he deserves the honor of a correct cause of death.
Jean, Claude's death certificate states "alzheimer's type dementia" as the only cause of death..... We never did get a conclusive diagnosis as two different neurologists each had a different opinion. All my research leaned toward the LBD diagnosis.
There were doctors even in 1926 who wanted the real cause of death put on death certificates. My grandmother's certificate says that she died from pneumonia CAUSED BY CHILDBIRTH. It must have been a really ugly childbirth since both she and the baby died from it. I always wondered what had killed her, but wasn't surprised when I finally got a death certificate.
I really think that it is important that the real cause of our LOs deaths get put on the death certificate. If they want to count the "complications" then the way magnoliarose's doctor did it is the right way.
Jean, I would like to add my two cents here too in your support. My mom had sick sinus syndrome, a heart beat irregularity. She had a pacemaker which kept her ticking longer than she otherwise would.. She never had a stroke, never had cancer, not any of those other life ending diseases. Her death certificate shows ALZ. And her brother, 11 years her junior, also suffered ALZ and had the autopsy too which showed ALZ not any other primary cause. When my mom died and I had to cancel her appt for the next week, some nurse said " What did she die of" to which I said ALZ and in a patronizing voice said " No dear she died from somthing else..a stroke maybe?" I said no ALZ and hung up. How dare people, especially those in doctors offices behave that way. Friends who don't know better need education and lots of it since this disease is so widespread now.
I lost my husband on November 17th. His death certificate lists the cause of death as "Alzheimer's Disease". I was glad they did, because I believe this aids in documenting the many (increasing number of) deaths due to AD, and perhaps aid in getting more funding towards the research into this DEADLY disease.
Perhaps you can print this group of responses and give it to the doctor's secretary.
This conversation reminds me of the diagnosis of my husband's "other" disease. In addition to FTD he also has PSP (Progressive Supranuclear Palsy). The diagnosis stated that the life expectancy was 7 to 10 year and that PSP in and of itself was not fatal. Most patients died from falls, choking or pneumonia brought on by the PSP. If that doesn't make it fatal, what does.
Susan L-- I think the answer to your question is a cultural and educational phenomenon. It is glaringly apparent in the language of some professions, but has been a part of us for years. We don't call a spade a spade--it's a shovel. Remember the commercials---"How do you spell RELIEF?" -- the answer--"ROLAIDS". For years a woman was "expecting", "in the family way", "pg". Alzheimer's is a "disease of short term memory loss". No one wants to state things straight out and no one wants to hear things straight out. Dr.s state the diagnosis as gently as possible and work the accurate details in, in increments. Those on both sides of the conversation sem to prefer this.
And then, when we become embroiled in the reality we can no longer remain wrapped in the cushion of this euphemistic talk. We no longer have the time nor patience to speak gently, nor wait for cushioned replies when we need straight information. Then, when we start speaking bluntly, those "ignorant people" don't understand because they haven't been informed. Nobody has come right out and said, BLUNTLY AND OFFICIALLY,: "Alzheimers Disease and all the other dementias are Fatal. No treatments available today stop their progression. The best we can do is attempt to slow the progression of them and treat their symptoms, so their victims can have as good a life as possible until they die." For some reason we prefer to have our information sugar coated.
"For some reason we prefer to have our information sugar coated" I think Drs are looking for an easy way out of giving a dx of a fatal disease. My best friend went for a biopsy of a large lump in her neck. The dr told her IT WAS NOT BENIGN. She came home all excited. Her sister with whom she was staying, couldn't bring herself to tell her that she had Thyroid Cancer. I had to go in and sit her down and explain that Not Benign meant Malignant. It was horrible for a 19 yr old to have to explain this. Thank God she got treatment and she is still my best friend, happy and healthy.
There are no strict rules about what a doctor is allowed or supposed to put on a death certificate. As long as the death was not homicide, suicide or an accident (which requires a Coroner's invesigation - however limited it may be) the patient's doctor can list anything they want to.
Officially the death certificate is suppose to list the "lethal chain". This lead to that, which lead to something else, which 'caused' the death. A familiar chain would be - Death caused by; 1. cardiac arrest caused by 2. Pneumonia caused by 3. Chronic Dementia.
Nancy B you are 100% correct that what is written on a death certificate DOES count!
The oft quoted phrases; "Leading cause of death in the USA" or "More Americans die from X than any other disease" are based on statistics that are taken directly from death certificates.
The American Heart Association regularly promotes that "heart disease kills more people in the USA than anything else" They promote the fact to aid their own fundrasing and of course to do something about 'heart disease'. What they dont say is that the 107 year old who's 'heart stopped' is not recorded any differently from the 35 year old who dropped dead while running a marathon. A 'heart attack' is a heart attack and it is always recorded as a 'natural death' and both are statistically equal.
If the American Heart Assoc wanted to "lower deaths caused by heart disease" they would develop guidelines that could separate the preventable(?) cardiac arrests from the "expected" cardiac arrests. But then they would not be the #1 medical charity. (Yuck politics in medicine!)
Personally I would like to see the the Alz Assoc push an agenda (among doctors and coroners?) that would get AD and dementia deaths properly recorded on death certificates. It would help draw attention to our situaiton and money to research. :-)
As for why people might not beleive that AD is terminal? I think it is because it takes so long to die from it. Remember: the leading cause of death is actually birth(!) Every one of us begins dying immedeatly after birth. (albet very slowly)
Cancer victims can die in 1-2 years(?) they are considered cured if they dont have a relapse in 5 years.
Looking back almost all our spouses had symptoms for 3-4 years before they were diagnosed. Then it is another 5-10 before death(?) No wonder people think you dont die from dementia. And the biggest public knowledge deficit is the hell that happens during those 5-10 years.
Keep talking to people the more that AD comes out of the shadows, the more resources will go into solving the problems.
Another is that people usually did not get dementia until old age and then it was called senile dementia. It use to be called Arteriosclerosis - hardening of the arteries in the brain. That is what my grandmother's death certificate listed. When she died at 94 she was living in her childhood = had been for many years. We called it senile dementia, a dementia where they able to still function. She lived by herself, my aunts would make TV dinners for her to eat, she gardened & quilted with what mobility she had left in her arthritic hands, read her Bible daily and was still continent. My mom had dementia but whether it was what we now call AD I will never know. Her's I believe was triggered by depression and malnourished. When my oldest sister found her she was crawling on the floor to the bathroom cause she was too weak to walk. She had been living on bread and cream cheese. For how long we have no idea. I am still fuzzy on the details as to why my youngest sister who lived 30 miles away had not checked in on her or why my oldest sister showed up. He death certificate list:complication of old age (she was 79)
The point is that they called it other things until just recently. I am sure if we could get them to go back just 30 years and put the truth on death certificates, the number that die from what we now call AD/dementia would be much higher.
Some years ago I read that, according to death certificates, more people died of Arteriosclerosis in cities than in the country. One suggestion was that the country doctors couldn't spell "arteriosclerosis".
Another reason for ignorance about dementia being terminal, I think, is that people can look healthy for a long time while they have it. People keep commenting on how good my DH looks (dx 5 years ago). With other terminal diseases, after 5 years, the patient has usually died or looks pretty sick.
Very good, marsh. We always lived in cities until we retired and moved to a woods in NW IN. Hb has vascular dementia; hope the good folks at the end don't abbreviate it "vd."