Follow
Share

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?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I meant to say that in my husband's case.....meds could "NOT" touch the pain.
Last line should read......
"in our experience the type of suffering does not compare to that of cancer".
Helpful Answer (1)
Report

Strictly from my own experience, cancer was much worse in every way. It is not my intent to downplay the horror of alzheimers but.........

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.
Helpful Answer (1)
Report

All good points but i suppose until we are ALL asked to sign a form that if we get this illness that we decide what happens to us things will not get better. My friends mum died after three years of lying brain dead in a bed my friend wanted the "peg" taken out but her siblings decided against it so docs decided 3 out of 4 they had no choice but to keep her mum "arificially" alive. My friend could tell even the docs found this heartbreaking and tried to convince the others to take out the peg but as you say the docs had to go with the majority decision. very sad i know my family would all agree to end this if that ever happened to my mum. I just feel that people get more support and help and sad to say sympathy when its "cancer" i know that cancer causes unbelievable pain and must be hard for anyone to see their parents like this but the suffering around dementia is just as bad and more longterm.
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.
Helpful Answer (0)
Report

Get a new physician.
Why is not Dementia studied?? It is, kind of....we have only just begun.... Why there are sites like this.
Helpful Answer (0)
Report

Dusty and littledog hit the nail on the head. Follow the money. Huge money.
Helpful Answer (0)
Report

Gees, I still have one more thing to say...sorry.

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.
Helpful Answer (1)
Report

I don't know where you live, but here in AZ we have one of the most collaborative seven organizations and research institutes working on solving the Alzheimer's/dementia disease. There are walks for Alzheimer's and you can get their newsletter online just by going to alz.org. In 2050, there will be more people suffering from dementia than all the other ailments combined.
Helpful Answer (1)
Report

To: Marialake: If only my own mother could express her feelings I should feel so fortunate. She believes that talking about death will result in death. She has signed only a health care proxy and that was done only after the state had taken over her care about a year ago, for about a month. It took me at least two weeks to gain control. The funny thing is what the state wanted to do is not what she would have wanted!

Your children are fortunate. Thank you so much for your post.
Helpful Answer (1)
Report

Also, when I was studying elder care from the years 1995 through 2,000, my textbooks, which included psychology, sociology, bereavement, grief, etc., etc., were already connecting the dots. At the time, 'assisted living' was a new concept and people were starting to invest in the building of such facilities. One would have thought that in the fourteen years that have passed, we'd be further along than we are.

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.
Helpful Answer (0)
Report

I'd like to add to this and ask, Why are sexual aids, i.e., Viagra and now we see meds for older women who are having problems with 'sexual intercourse (can you imagine having a child under the age of 5 hearing this and asking whomever he's in the room with, "Daddy, Mommy, what is 'sexual intercourse?"!) now advertised so outwardly by drug companies, but dementia ignored?

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.
Helpful Answer (2)
Report

Isn'teasy.............I totally agree with you. And the comment about "being suspended" is just so dog gone true.
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.
Helpful Answer (3)
Report

GardenArtist – I agree. Many doctors feel their hands are tied; by families who want to "do everything they can" and by fear of law suits brought by families who feel more could have been done or been done differently. It's a perverse culture we find ourselves in and that's what's to blame – the prevailing belief that we should artificially prolong life at all costs.
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.
Helpful Answer (5)
Report

Isn't Easy, you make a lot of good points. But I think the doctors are also in a bind because of technology advances and potential malpractice issues. If they don't use all the technology available to them, would they still be considered as doing the best for their patients? I think there are arguments for both sides of this issue.

But you do raise a good point.
Helpful Answer (3)
Report

FreqFlyer, you are so right! Pink ribbon campaigns may help, but how many of the companies supporting them include chemicals in their products, chemicals which may have already been identified as carginogens? And look at the carcinogens in food and how long some of them have been additives.

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.
Helpful Answer (1)
Report

Having people linger with advanced dementia is a relatively recent development. Society just hasn't figured out yet how to deal with it.
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.
Helpful Answer (6)
Report

What irks me is that we need to find out WHY we are getting cancer/dementia/Alzehimer's and stop it BEFORE it happens.... not keep dwelling on the cures and covering everything in pink or whatever colors.

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.
Helpful Answer (3)
Report

Dementia is a mental disease and somehow mental disease is a source of shame in our society that other physical diseases are not. The brain is a physical organ like the heart, but until the last couple of decades we couldn't see the physical disintegration of it until autopsy.

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.
Helpful Answer (2)
Report

SDO, thanks for sharing your insights on the pharmaceutical companies lobbying efforts.

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.
Helpful Answer (2)
Report

Yes we do need more support and early diagnosis for dementia related disorders.My mother just passed away and her final days were extremely painful with no ability to communicate. It was heart-breaking and had the culture of her time been more available to mental disease and the various types of disorders she may have received care at the early stages which didn't happen. The final stages happen really fast. she was gone within 2 months unable to swallow, communicate and totally bedridden. we did have Hospice which kept us all sane.
Helpful Answer (0)
Report

Well this also cover certain brain injury victims that have the same problem as dementia patients, the logic is they are vulnerable and can't fight back to defend their rights, they are exploited at all ends.
Helpful Answer (1)
Report

My husband died a horrible cancer death. The physical suffering was immeasurable. BUT his personhood was still there - even at the end. We still had our relationship. He was struck down during a wonderful time in our life.....the kids had just married and we were very happy. I miss him in every corner.
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.
Helpful Answer (2)
Report

I think because cancer has a chance of being treatable if caught early and dementia is not, so why waste the time? I would have to agree with the above answer(s)
Helpful Answer (4)
Report

Oops! Another brain failure...meant to add something more controversial.

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.
Helpful Answer (3)
Report

Interesting question. I think:

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.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.