AND no offfence to anyone whos suffered from cancer" Lots of ads on TV for cancer research or cancer support or charities i think this is great but why do we never see any ads for dementia help or support? and its true that people get more professional support for cancer than dementia? my mum was diagnosed a year ago and her own doc never calls to see why she hasnt been in or gives a hoot?
Last line should read......
"in our experience the type of suffering does not compare to that of cancer".
My husband and I were extremely happy together. At age 49,. Bill was diagnosed with bladder cancer and we chased it round and round his body. Four years ago......... cancer finally killed him and the light went out of my life.
Watching Bill suffer in awful physical pain was torture.
For him and for me.
Meds could touch his excruciating pain. The cancer so compromised his digestive system that he was unable to metabolize pain meds. We had excellent staff and hospitals but they shook their heads sadly and said........"sorry" and then crept out of the room.
I compare that experience to.....
Fifteen months ago, I moved Bill's mother (Alzheimers into my house to care for her It's a given of course that our relationship is totally different. Soulmate husband vs MIL. Yikes!
Even so, addressing just the illness itself........cancer was far worse in our case.
My MIL is not in physical pain and I am not watching her writhe in agony. Can I say she is suffering emotional pain?........not so much. And a big thing here is that meds help her a lot - a far cry from physical agony.
Her world is mostly "all about her" A person could be bleeding on the floor beside the bed and her comment would be: "I want a cookie". or maybe " I'm cold." Alzheimers is horrible but in our experience, the suffering to be comparable to cancer.
Lets just hope when most of us get older there will be an answer to this degrading illness. Sorry my point was that my friend has made a POA that if anything like this should happen to her that she would not be artificially kept alive. And shes only 35yrs old.
Why is not Dementia studied?? It is, kind of....we have only just begun.... Why there are sites like this.
To add to the comments about prolonging life with Alzheimers, especially at a very older age and I'm talking about people who are in their 90s! I feel that if I suggested to the doctors we withhold pills, they'd call Department of Elder services! I was shocked when one psychiatrist, mentioned perhaps we should start to think about quality of life versus quantity! My mom wants pie, but she has diabetes. The doctor said to me let her have the pie. I still feel that if I let her have the pie and her blood sugar goes up, her kidneys fail more than they are failing, they'll put me in jail! That's how hard it is today. You're damn if you do, damned if you don't.
One example is recent. My mother recently moved in with me in another state. She saw a new physician who took her vitals, etc., etc. We made an appointment for two months. About a week or two ago, I got a phone call from the nurse stating the doctor wanted me to bring my mother in to recheck her blood pressure because she had just gotten the report from the doctor up north that stated her BP was lower (this was three months ago!) than it was when this new doctor checked it. She wanted to do a recheck.
I said, No, I'm not bringing her in (it's a 45 minute drive) and I'd check it myself. Since she has an appointment at the end of June anyway, why should we have to go all that way, have my mother upset (she hates doctors now) when the BP we were talking about wasn't really all that high in my opinion?
So, Thursday are the quarterly blood tests for A1C, kidney, etc., and the end of June for the regular quarterly exam. My daughter wonders why a person this age has to see the doctor so regularly, esp if she's not suffering. Her body is fine and at this rate, the doctors with their prescriptions and me with the diet could keep my mom going forever. But her brain is rapidly deteriorating. So I watch as she pretends to read her large print Reader's Digest (she has about 20% vision and I know she can't see it. I watch because she doesn't hear what's behind her, beside her, or in front of her. She nearly walked into a very huge book stand the other day. But 'I can see!'.....'I can hear!'...she just can't 'do' without aid.
Your children are fortunate. Thank you so much for your post.
We're not. At least we're not there yet for those I would classify as middle-lower class income people. Sure, there are assisted living facilities for those who can afford large entry fees and larger rents each month, but not so much for those who are middle-lower income.
Money talks. Plain and simple. And yes, we are a capitalist society and I like it that way, however, it does tend to leave out the lower class, like my mother, who is of the WWII generation, i.e., 91. Her income is social security and my dad's retirement (141 per month) after having worked 50 odd years. She gets Social Security, i.e., $1300 plus change, of which money is taken out for medical care. Try living on that for a month. I can't. If it weren't for me, where would she be? Sure, Medicaid will take care of her, but in what type of facility and with what type of care? Horror stories abound. Not complaining, no need for an answer, just putting in my two cents here. She's comfortable here, she's well cared for with me, but I wonder about others.
The reason is the drug companies make lots and lots of monies by developing and selling these drugs.
As for Cancer, it was the illness de jour for the past thirty years, so there are more and more drugs for this. In 1981, when my MIL was having symptoms of what I used to call 'Alzheimers' (everyone thought I was crazy at the time) there was virtually nothing written about dementia and/or Alzheimers. Today, it's more mainstream and drug companies are working on it because it's starting to affect the baby boom generation, the largest generation to come in the history of this country.
So, hopefully this will answer your question. It's all in the numbers and that includes the money numbers.
Each time I see ads for these sexual wellness medications, I wonder, What about those with MD, Parkinsons, Dementia, Alzheimers? What about those with diseases that we never hear of? And the answer always comes, it's about the numbers.
When I was 59 years old, my husband died ....so a few months later (when I could even think), I made it a priority to prepare for my departure. I gave our kids copies of my living will so that I will NOT be kept alive by any heroic measures.
We are all born to die one day.
Speaking for myself.......I enjoy good health and am here for my children, extended family, friends etc
However, when my time comes......
I do not want to linger for years in a mindless state.
I have my affairs in order and actually look forward to joining my husband.
I miss him greatly.
So - ultimately for me: to die is gain.
Some doctors treat patients as a list of symptoms to be resolved, so they're well suited to the culture. They have a seemingly bottomless bag of 'tools' to treat every condition. But, many doctors' are caught up like the rest of us in this transition from an era where not much could be done to an era where we have to decide what should be done.
Ethicists are having trouble keeping up. Who is 'playing God'? The doctor who orders a pacemaker for a dying, demented patient or the doctor who allows that patient's heart to stop beating. For me, the answer is that, at some point, God (or nature, depending upon your beliefs) has to be allowed to take over. The task is determining that point.
But you do raise a good point.
There's an alternative cancer campaign: Think Before you Pink.
There was an article in Time in the last few years about management of cancer charities, comparing the majority of them to the more professionally managed ones such as Livestrong. Gates's foundation was also identifed as a charity that's professionally managed.
By that it was meant that these two charities are run like a business. They're results oriented, with evaluations of contributions and the work that's produced. They don't just send out cheap address labels by the dozens or bombard people with Beltway Bandit written solicitations.
They actually do run like a business.
The harder part is going to be forcing agriculture to change, to stop using chemicals on food, to address all the products we use which have carcinogens, including plastics.
In generations past, people aged and died, often becoming demented before they died.
But, people didn't get suspended in a state of having largely lost their minds, but having their physical health prolonged by medical intervention.
Our grandparents got a little 'dotty', and if they were lucky, went "gently into that good night" in not too long a time.
Our parents on the other hand, get dotty and their doctors still treat every step in the dying process as if it's a separate disease or condition.
My mouth drops open when I hear about demented elders being subjected to pacemakers, dialysis, etc, etc.
I'm already telling my children that once I start to mentally fail, I want to give up any medication I'm taking that's not important to QUALITY of life – no blood pressure pills, no cholesterol meds, etc.
We've reached a level of insanity where it's not uncommon to hear of doctors ordering colonoscopies and mammograms for patients in their 80s and proposing heart procedures for 90 year-olds with dementia.
Let's also spend research time/money finding a way to keep these diseases from happening, along with finding a cure. It is in our environment? Is it from all the chemicals in our food? Too much hormones in our livestock? Can it be stress related? [I know stress caused my cancer as I had no other triggers].
Some day I would love to see a vaccine that would help the next generation from getting these horrible diseases.
You are much better off with a diagnosis of liver or pancreatic cancer which will take you in about a year than a diagnosis of dementia after which you can live for another 20 years in a state of neediness and confusion and anger that leaves caregivers feeling sorry for themselves and wishing you were dead.
If we had sympathy for dementia sufferers they would not be left to the untrained care of family members whose history with that relative might not be one of mutual respect.
We pass the homeless on our way to and from work and try to pretend that the reason they are there is through some fault of character or will, not mental disease. Although children and teens can display signs of bipolar disease, schizophrenia, and other mental deficits, we view them as a family problem, not a societal problem.
Until that attitude changes, until we stop believing that sufferers of mental disease somehow retain control on some level of their behaviors or that family vigilance is the sole answer, nothing is going to change about how we as a society handle diseases of the brain.
I predict that these attitudes will undergo radical enlightenment with the aging of the more than 76 million baby boomers over the next two decades. Dementia will become the next health crisis. A tipping point of families will become overwhelmed and we will finally provide adequate care that will keep sufferers safe while giving their family members respite from the awful guilt they endure because of lack of education, training and personal desire to handle the daily demands of the afflicted.
Prior to becoming a recognized epidemic, cancer was once the disease no one talked about. Now medical interventions have attached hope to the outcome--a cure, a remission, pain relief--all sorts of care and support have sprung up that weren't available 50 years ago to help families cope.
I saw just a glimpse of something on a much lower level once as I was leaving an all female medical practice. A runner was bringing in massive volumes of carry-out lunches for the staff. I casually mentioned it to the receptionist, who told me it was gratis. I saw on the runner's jacket the name of a pharmaceutical company.
Although I haven't followed this issue, it's my understanding that the U of Michigan banned all gratuities to medical personnel from pharmas. That's the first step in breaking the hold of the pharmas over physicians.
But there's still a long way to go, and the issue of contaminated meds from emerging market countries is one which complicates the issue. Who knows how many of the free meds are impure?
After some searching, I've found a pharmacy which respects my decision not to use emerging market manufactured meds. They tell me the name of the manufacturer and I call them directly to ask where that particular drug is manufactured. Granted that some of the ingredients may have been sourced offshore, but at least the manufacturing is done here, subject to FDA oversight.
Combined with the predominance of western medicine's reliance on medication first and natural remedies second, if at all, the pharma interest makes the whole issue of medication one which to me is troubling.
My MIL's alzheimers is so different. I know that no matter what I say to her.........it will be lost immediately. There is no give and take. It's also a respect thing. It is hard to respect someone who has regressed to childlike behavior. Cancer patients are respected as people who are still themselves............but have a painful disease.
With dementia, the "person" becomes a stranger and that causes people to pull away. Especially when the "stranger's" behavior is sometimes combative and argumentative.
My husband is greatly, greatly missed.
My MIL won't be missed in the same way. As her caretaker, I've spent much more time with the MIL w/alzheimers..... that I ever spent with the original "her" Sadly, there are few folks left who remember her any other way.
9. I don't think older people, considered generally to be the prime sufferers of dementia, rank as highly as the broader spectrum of those with cancer, and aren't given as much attention in the media. There are negative connotations of elders "going batty", becoming emotional and unstable, being a burden to their families, not contributing anything to the community, etc.
10. This is not a country which has as much respect as it should for elders. I have a sense that sometimes they/we're (as I'm just about there) are kind of viewed as old worn-out models and burdens to society, whereas young people for decades have been seen as the next vanguard of wage-earners....bright young things eager to embrace technology and set the world on fire with inventions and new ideas.
1. Cancer crosses all boundaries of age and therefore can affect more people than dementia which is perceived to be an elder problem.
2. Cancer organizations and charities have become adept and sophisticated about publicizing and fund raising.
3. Gilda's Club and Lance Armstrong's LiveStrong are, in my opinion, well known respected organizations, apparently well run, and provide good outreach and publicity.
4. Hospitals have expanded cancer support through hosting support groups, adding infusion centers, moving into "mindfulness" and crafts therapy.
5. To my knowledge, the Alzhheimers Assn. is the only and most well known dementia group. There are probably others, but I don't think they're as well known. And it serves a multi-purpose role, whereas some of the cancer charities have more limited roles.
6. The magazine CURE is I think a very good magazine and provides excellent articles on cancer ranging from scientific research to practical advice. I haven't really searched for a comparable magazine on dementia, so I can't speak to whether there is one.
7. I think the medical community is still learning how to deal with dementia, as are caregivers. It's almost as if there's a massive increase in diagnoses, yet cancer has unfortunately been around for decades if not millenia. I vaguely recall watching one of the scientific programs on Egypt on which cancer had been diagnosed in mummies. This is just a recollection though, and sometimes those become blended with other memories so I don't hold that observation to be 100% accurate.
8. And, although this may seem like skepticism and bias, I've heard comments from therapists and a few other medical professionals (and in fact on tv yesterday on an RLTV program) that there's big money in pharmaceuticals for cancer treatment (no surprise there) and potentially unhealthy links between the medical-pharmaceutical complex, something like the military-industrial complex.
On a negative note, though, there are some cancer groups that may be charities as classified by the IRS, but they're scam groups. Anderson Cooper occasionally hosts a program exposing some of these scam groups, including ones who prey on veterans and military families.
I'm not sure I would know how to compare the support levels, as they would encompass funding, programming, online and in-community support, hospital and SNF/AL and long term care support.
I do recall that when my sister asked the American Cancer Society for support for a medical leave for her second round of chemo in a year, they refused to work with her. Obviously they never get any money from us!
Thoughtful question; I'll be interested to read others' answers.