I'm sure that I read somewhere about the percentage of caregivers who die before their LOs, but I can't find it. Does anyone know the data and a source?
All I know is that my MIL died 3 years before my FIL. She never told anyone about him having AD. We knew something was wrong, but didn't know what it was. We thought he'd started drinking. How quickly we learned.
From a purely statistical standpoint, you can check out this article - http://www.thefamilycaregiver.org/who_are_family_caregivers/care_giving_statstics.cfm You will need to scroll down a little to "Impact of Caregiving".
Personally, I don't think it is the long term stress as much as it is the caregiver neglecting their own health and putting off preventative tests because they are too busy taking care of their loved ones. I know I am terribly guilty of this. Every time I turn around, it's another doctor visit, sometimes two in a week to one doctor or another for Sid. He has another two next week, and one is that 100 mile round trip again.
Joan...where do you go that's 100 miles away for Port San Lucie?? The Mayo Clinic????.... Always keeping an eye out for the best docs in that area...as our son lives outside of Savannah and wants us to move there. It would be good to have a master list of the highest recommended Alzheimer's and Related Diseases Research Centers and Docs around the country. Also wondering if there is a top notch doc in the Austin, Tx area.
I know for a fact I will die first. I have congestive heart failure and cardiomyopathy....with a relatively low ejection factor. I'm 70 and he is 82. His heart is as strong as a young man's.
It's 100 miles ROUND TRIP. 50 miles each way. It's Premiere Research Institute in West Palm Beach. Congress Avenue.
Actually, I think it's 46 miles each way. I'll check the mileage next week. We've been keeping track for tax purposes. The tax thing is on another thread here.
I hate to show my ignorance, but unless your DH is ill (fever, pain, vomiting, headache, etc.) why do you take them to a doctor? I only take DH to his PCP if he has the above symptoms and 2-3 times a year to have his BP checked.
Is there something I am missing or don't know about?
My MIL died in 2001 after taking care of my FIL for over 10 years. He is still alive. She died because, as Joan said, she did not take care of herself. She refused any help, even for some time by herself. She literal killed herself - died of a massive heart attack - she had no history that we knew of.
I've read and heard it said, that most well meaning people say, "let me know if there's anything I can do"...........rather than "I'm coming over Wednesday afternoon to spell you ...and fix dinner." Guess which one I appreciate the most.
In 2005, I wrote the following article, many are the same as posted in article Joan cited. 15% of AD CG's die before their contempories and many, as noted in above posts,die before the one they are caring for. Statistics vary regarding almost everything about Alzheimer’s, but the following, gathered from numerous sources not specifically cited, are within the generally accepted norms.
• One out of three Americans knows of someone with Alzheimer’s, but the vast majority knows little about the disease and shows scant interest in learning.
• Alzheimer’s can begin to attack the brain decades before the first symptoms appear.
• Medicare and almost all medical and hospitalization insurance do not cover the cost of long-term care for most Alzheimer’s patients.
• In June 2001, the Alzheimer’s Association reported that over 62% of respondents to the question, “Do you think your physician is knowledgeable about Alzheimer’s disease?” replied ‘no’.
• In 1999, there were 44,536 deaths from Alzheimer’s, surpassing the combined total of auto accidents and breast cancer in the United States.
• As of February 2003, in America, Alzheimer’s was the fourth leading cause of death, following heart disease, cancer and stroke.
• One in 50 Americans has Alzheimer’s. Every day, an average of 986 patients is diagnosed with the disease.
• Three-quarters of home-bound caregivers do not get consistent help from family members, especially spousal caregivers.
• Estimates are that 5% to 25% of victims have Alzheimer’s in the family. To date, there is no known cause for the vast majority of others stricken.
• Depending on where you live, the average annual cost of caring for an Alzheimer’s patient is easily $60,000.
• The average length of stay in a care facility is 2 to 3 years but it can often last 6 or 7.
• Today, the annual cost of Alzheimer’s care to America is about $100 billion and by mid-century, as the boomers age, the costs are expected to overwhelm the health care system, bankrupting Medicare and Medicaid.
• Forty-three percent of caregivers for Alzheimer’s patients fall into a clinical depression that can linger for years, even after the loved one dies.
• **********Fifteen percent of Alzheimer's caregivers will die before their contemporaries and many will die before the patient they’re caring for.
• Elderly caregivers with a chronic illness themselves have a 63% higher mortality rate than their non-caregiving peers.
• The caregiving spouses of Alzheimer’s patients suffer from depression at three times the rate of others in their age group.
• In 2002 alone, Alzheimer’s cost American business about $61 billion dollars.
• Even if a loved one is cared for in the home, it can easily cost over $100 a day just for an in-home aide; and medications, supplies, rentals, doctor visits, visiting nurses and more add up to another average of several thousand dollars a month.
• Alzheimer’s is the third most expensive disease in the United States after heart disease and cancer.
• Well over 4 million Americans have Alzheimer’s.
• 76 million boomers are reaching the age where Alzheimer’s is most prevalent. By the time they reach their mid-80’s, 50% are expected to have Alzheimer’s.
• By 2050, Americans with Alzheimer’s are expected to reach 13.2 million.
• Currently there is no cure for Alzheimer’s and only a few drugs that can sometimes slow down its progress and maybe reverse, briefly, some symptoms in some patients.
• The current aging population is now more vulnerable to Alzheimer’s because drugs and surgeries have been developed to prolong the life of those with cancer and heart disease only to leave them more susceptible to Alzheimer’s as they continue to age; along with any residual cancer and heart conditions as well as other diseases like diabetes, and just general aging.
• While it is true that some younger people get Alzheimer’s, it is generally considered a disease associated with aging. This trend is likely to continue as more diseases are overcome and more and more people live longer.
• Although 45% of Americans have had personal experience caring for an aging relative, 46% admit they have not planned for the possibility of their own long-term care. Despite what boomers see happening to their aging parents, they believe it will never happen to them.
• 63% of Americans do not have a will or living trust.
• Most Americans never discuss such issues with their families.
• Caring for a relative with Alzheimer’s is so grueling, physically and emotionally, that nearly 75% of caregivers are relieved when their loved one dies.
• Ninety percent of caregivers believed that death was a relief for the patient.
• There are lower rates of depression among those caring for someone with cancer and other terminal diseases than there are for Alzheimer’s.
• Those caring for Alzheimer’s patients endure the anguish of caring for a loved one who, in many respects, is already gone. To make things worse, the disease often causes patients to seem unappreciative of the enormous sacrifices made for them by the caregiver.
• Half of Alzheimer’s caregivers spend 46 hours a week caring for the patient and 59% feel on call 24/7. Alzheimer’s caregiving is exceptionally long and demanding.
• In 2003, in the United Kingdom, about 5.9 million people provided informal care for another person. Of those, only 56% were in good health. Conversely, 70% of people giving no care were in good health.
• Again, in the UK, 53,000 boys and 61,000 girls between the ages of 5 and 15 provided informal care; 18,000 provided 20 hours or more of care a week, 9,000 provided at least 50 hours. The health of 773 of these children under 16 was rated “not good.”
• 498,000 men and 539,000 women over 65 were informal caregivers in the UK. Over 1/3 provided more than 50 hours a week, and more than 1/4 rated their own health as “not good.”
• Over half of the oldest informal caregivers in the UK, those over 85, provided care of more than 50 hours a week. The health of 1/3 was rated “not good”.
• The above informal caregivers, as opposed to paid employees, are in contravention of the European Working Time Directive.
• Alzheimer’s is all but a step-child in medical care and research. Far less money and effort are spent on trying to find a cure for it than on other more ‘popular’ diseases. This mind-set has to change, otherwise, with more and more diseases being cured, with more and more people living longer, with 50% of them destined to suffer and die from Alzheimer’s, and substantial numbers of informal caregivers ruining their own health in their caregiving efforts, then what’s the point?
Mawzy, I ask the same question about taking your LO to the doctor about a year ago. I agree with you. I don't need a high priced doctor to tell me she has done worst on a mental test or that she is progressing to a new stage. It is obvious! If there are no new medicines they can offer that are better than the current ones, then I don't take her. I do take her for non AD issues. DickS