I started this earlier, then quit - just wasn't coming out right. So I'll try again! I read through the NBC reports on AD, the personal stories, & in my humble opinion, with the exception of Jim's, Joan's story was the most forthright & honest. It seemed to me that a couple of them were still trying to be "nice nice", not wanting to speak with honesty from the gut. Am I wrong? I don't know if they were spousal caregivers or not, one didn't seem clear on that issue, others worked with AD patients or mentioned other relatives or friends --- did I miss something, or misread? Maybe I just missed the point, but what I do know is that Joan & this site are treasures, as are each one of you! :) Thank you a thousand times over!
How can I delete this? I think I made an error about what I was reading. In any event, pay no attention to it!!!!! It's been a gloomy, dreary, misty, not feeling so good kind of day - sorry.
I agree - as with other reports, many do not tell it like it is. Joan and Jim did - they told the reality of living with this disease for both the caregiver and in some degree the person with it.
My belief is that if they had too much brute honesty out there what it is really like, it would turn people off/away. By sugar coating it the hope is they will get peoples attention. Diabetes: when they started talking about the reality if people did not take care of themselves or even when they did bad things still happened, they got more attention and money. I am referring to people going blind, loosing toes, feet, legs, kidney failure, etc - all that can happen things seemed to happen faster.
Jim's story is a good story that needs to be heard.
Joan's nightmare of trying to get help and placement needs to be heard. It just does not make sense when there are spouses here who Medicaid in their state will OK placement when they are not as bad off (as a whole) as Sid and Joan's situation yet Joan had to go through a nightmare to get approved and place Sid. It really makes me scared that when the time is right for us, that Medicaid will not approve.
My MIL died of a massive heart attack leaving my FIL looking at her lying on the floor. Somehow he figured out to go to a neighbors. What if there had been no neighbors home? Would he have wander off since he was a 'runner' and could cover long distances quickly. Then we would have had two dead people - one who was ready for death (FIL) and one who died trying to care for him refusing help or not know what was available.
The reality needs more attention. I did like one interview with Maria Shriver talking to a doctor who admitted that none of the drugs work to slow the disease down, that it is terminal and costly. We need money for research to equal that for cancer or HIV/AIDs.
We need people high up who care before it affects them.
Thank you Charlotte - I'm glad you DID pay attention to what I thought was an errant post on my part. Yes, you're right about the brutal truth - I suppose people really don't want to hear that, but I personally, want to know what's coming, what's going on, what to prepare for (well, sort of...) - for myself & with D. Knowledge is preparedness for me. This past summer (& still!) I've had a medical problem, spent time in the hospital - all appears to be going okay, but I wish someone had prepared me for how long the healing process might be! I might not have become so anxious at times.....but, as they say, time heals all wounds ;) - pun intended! I don't envision myself in the role of an advocate, but with life's twists & turns, one never knows where the experiences might lead them. I'm still trying to figure how to put together a "circle of AD friends", you might call it, spouses only, like this site, but I've been set back a little this summer. Oh well, when the timing works out, will be the right time.
Thanks Mim. When I started this website, I felt like I was about the only Alzheimer Spouse on the face of the earth who spoke the brutal truth. From the responses I have received right from the beginning, it has become apparent that there are thousands who are suffering as I was and still am. But I also believe that being able to share our stories, gain information and strength from one another, and realize that we are NOT alone, has empowered all of us.
When I read the other stories on the NBC website, I felt a bit as if I had been too much of a "downer", but I stuck to my guns and told the truth. Since the beginning of the website, I have written many blogs and informational pieces about how to stay positive for as long as possible; how to enjoy each other's company for as long as possible; activities to engage in to nurture the relationship at all levels. Many people are turned off by this website because they say it is too depressing. I understand that, but its purpose is to offer support, as well as educate and inform, and I don't believe any of that can be accomplished by "polyannaring" (how's that for a made up word?) the truth.
Jim wrote somewhere that when Maria was interviewing him, she kept trying to steer the theme towards positive hope for an Alzheimer cure. He said (rightly so) that no one wants to contribute to a lost cause, so the media has to play up the positive hope that research is progressing well towards a cure.
To see more money for dementia research you need political power, which means you need to be able to deliver votes, to go out and get organized. Politicians are moved by individual testimonies, but I learned long ago that you need to be able to deliver votes. Which means you need to show that many people care about this issue. Which might mean you have to convince more of the public that this is an important issue and that we need to spend money on research.
The AIDS/HIV community has done a great deal of organizing and activity to get AIDS/HIV research moving. They started with hostility to doing any research to gaining support. Of course many medical researchers opposed to any AIDS/HIV research insisted on getting a large part of the pie once research money was available.
I'm not going to mention any specific diseases but there are some that get a lot of publicity and get research funds out of proportion of the mortality rate of the disease. But I can't think of any fair way of dividing up research money, the tug and pull of our current system seems to be the best way and we need to muddle through and organize.
I know for myself, until this hit us. I truly thought AD was an older person disease.( DH has EOAD, dx at 58.) And that AD was just a part of aging. And you only lost part of your memory. I learned a lot in the first few months of reading on the internet. And it seems that most people were like me when we first started talking about AD to family and friends.
The conversation has changed so much in the past 3+ years it seems. Football players are getting dementia, Glenn Campbell, Pat Summitt. Names that most know, now in the news. I feel we have hit a tipping point and it is now becoming a problem that we can no longer ignore.
And much credit needs to go to Joan. Who has given us a platform to speak from and the ability to put a face with the disease.
I think that part of the reason that other diseases get more funding than dementia is because they hit people in their prime of life - breast cancer, AIDs/HIV, are just two examples, but I could probably add MS and a host of other diseases. WE, the members of this board, know that dementia is not just an older person disease. And as blue says, the conversation is changing, but too many people who have the power to make a difference, including the medical profession, still believe that AD is an older person disease. And until that changes, I don't see much changing on the research front.
If we assume that all ALZ 'caregivers' are being honest then you assume that they will be speaking from THEIR OWN EXPERIENCE.
Most of the 'caregivers' are in parent/child relationships. While they struggled I have yet to really see a parent/child caregiver as personally and intimately involved as with a spouse situation.
Not to pick on her because she IS providing attention, but when Maria S was talking about how difficult it was to 'care' for her father I kept thinking; How many days did you lose from work to perform caregiving tasks? How depleted did your bank accounts become when paying for professional care? How endangered did your future or your children's future become because you were doing direct caregiving? How difficult was it for YOU to bathe your father? Did you find changing your father's diapers disgusting? Were you as sad and disappointed when you had to place your father as you were to lose your married relationship?
I see this as the difference when so many folks talk about the "difficulties" of their providing ALZ care. How involved were they REALLY? Then when you ask them to describe the trauma of being an ALZ caregiver, you get the answers that are routinely printed.
m-mman I agree with you. I think if you could have ask any of those questions the honest answer would have been " Fortunately, I did not have to deal with any of those aspects of caregiving." In reality,spousal caregiving is trauma all the way. A spousal caregiver is totally consumed mentally, physically, emotionally and financially with living the ALZ spouses life. The spousal caregivers life is placed on hold or vanishes completely. It's good to here from you and I hope you are doing well. I hope you will be able to find the path toward happiness soon because you deserve it.
m-man, I agree with you as well. That's not to say some caregivers of parents don't experience the loss of relationship, mental and physical exhaustion and financial burdens, particularly if they are the sole caregiver. But usually they are financing the care with their parent's savings and if there isn't any then they qualify for Medicaid. That's very different than when you are a spouse caregiver, particularly of a younger onset spouse, where you are spending and depleting YOUR retirement savings to care for your spouse and face having nothing when you need it.
I too was very uneducated about AD and dementia...I thought it was mostly an elderly persons disease and only involved memory loss. I also mistakenly believed the person was happy and docile as they began losing their memory. Of course, now I know better. I think one of the biggest hurdles in education of the public and getting funding is that most of the advocates such as Maria S, Leeza Gibbons, and others is that it fits the misconception that it is an older persons illness. They are all children caregiving for parents. There are not any well known spouses coming forward to highlight the ravages of this illness on marriages, families and finances. That's why I thank you m-man for your willingness to tell your devastating story and advocating on behalf of all of us.
Jim (m-man), it's too bad that most of us (including YOU) are just too nice to ask the questions you thought of in your mind to the Maria Shriver's of this world. I seem to recall when she was separating from Arnold S., their net worth was in the hundreds of million dollars. THAT, to me, is mind boggling, and I doubt a single reader of this huge website that posts is worth anywhere within fifty miles of that figure. Certainly, Sargent Shriver himself was not without wealth.
This is not to say that I don't appreciate her dedication to getting more funding for research and help for caregivers. Only she has been able to put herself out there with the media and helped to get the word out. I understand that she worked several years trying to get her Special on one of the networks a few years ago. Only HBO agreed to carry it eventually. She is very dedicated, and we appreciate her every day.... but no, Jim, as you said, she really doesn't 'get it'. Not the way all of those down in the trenches do.
Toward the last of my 6 years of caregiving, I was washing my hands twenty plus times a day. During the last year that I had my DH, I was asked to record my fingerprints as a condition to renewing my real estate brokers license. I went back three times to the bureau where they took the fingerprints because I didn't have any! No fingerprints! They didn't use the old fashioned ink pad method, it was done on a computerized plate where each finger was 'rolled' onto the little square. They could not get a print to register at all. Apparently, I washed them away with all the soap, Purell, and hand creams. That's a small thing, I know, but I betcha Maria has always HAD fingerprints!
Once again, you have nailed it. I am thankful and grateful to Maria for continuing to raise awareness about Alzheimer's Disease. Her heartbreak from watching her father disappear into the Alzheimer abyss is raw and real, BUT she has NO IDEA what hands on caregiving and financial struggles are about.
A reporter contacted me a couple of weeks ago - she's doing a story on the financial burden of Alzheimer's Disease on caregivers. We've been playing phone tag, but when we finally do connect, I hope to be able to do my bit for AD financial awareness raising. And tell some brutal truth about what "hands on" caregiving really means.