Up until now, we have read studies that urge us to use our minds to delay symptoms of Alzheimer's (the leading cause of dementia).
So how is it possible that the calm collected PM who spoke eloquently during raucious sessions of Parliament (and many times without notes), struggles to recall major incidents while her brain succumbs to the clutches of this terminal disease?
Read more at Thatcher's Battle with Dementia.
This is a magazine I enjoy reading for the diversity of articles with just enough content to be informed across the breadth of aging topics.
See if you agree. Try a complimentary subscription now at Aging Well Magazine.
Those of us who have journeyed the road of caregiving for our parent, spouse, partner, significant other, siblings, or other share a common bond.
However, those who care for a spouse face a unique experience indeed.
First, unlike married caregivers of parents, spouse caregivers no longer have someone to share intimate moments with or someone with whom to discuss important issues. While caring for my father, I could still discuss caregiving options and challenges with my husband.
Second, unless they have children close by or even living at home, spouse caregivers bear the caregiving burden mostly alone.
There are many other differentiating factors that caregiving spouses already know.
That's where Joan Gershman comes in. She launched TheAlzheimerSpouse.com a year ago finding it difficult to locate resources to help her cope with caring for her husband, Sid, who has Alzheimer's.
She sent me an eMail (abridged): Believe me, it is a completely different emotional dynamic than dealing with a parent or grandparent, and most spouses have no where to turn with their conflicting emotions and guilt.
If you are a caregiver for your spouse, partner, or significant other, be sure to visit Gershman's website. Then, let her know you learned about her site at TheCaregiversVoice.com.
The Alzheimer's Foundation of America (AFA), a national non profit organization, has quickly found a valued niche among caregivers, filling gaps that the Alzheimer's Association seems to have left behind as it raises funds to support research toward finding a cure.
The AFA's mission is to support those with Alzheimer's / dementia and their families and caregivers. Vist the Alzheimer's Foundation of America and then be sure to subscribe to their monthly magazine care ADvantage Magazine.
GUILT? No, no more guilt! Think of what you do each day. If you're so stressed out that you don't realize you need a break away from caregiving to return refreshed and ready to provide better quality care for your loved one, YOU definitely need a RESPITE!
What better way to catch up on R&R&R (that's Rest, Relaxation, and Rejuvination) than going on a Caregiver Cruise?
Watch their CAREGIVER CRUISE YouTube Video.
Then go to Caregiver Cruises for more information.
Bottom Line: YOU NEED a BREAK!
P.S. Oh, and one more thing, be sure to write to Patrick Toal, MSW & Travel Planner and tell him to invite me on the next SHORT cruise. (Even though, I tend to get motion sick, I'll make sure you have a memorable time!)
See Brenda Avadian's BIO
While studying the Tau protein, which masses into tangles in diseased brains, Wischik came upon an accidental discovery.
In 1988 he tried to dye these tangles in a test tube with methylene blue, an old malaria drug, in order to make the tangles more visible. Instead, the tangles dissolved.
This surprising result, lead to Rember, a drug his company TauRx created two decades later. Rember may be the silver bullet in significantly reducing memory loss among those with Alzheimer’s.
Read more here.
In Parts 1 and 2, we stressed the importance of bringing a patient advocate with you to the doctor's office and stopping the doctor if s/he says something you don't understand. In this final part of the series we look at the Internet as a resource.
How good is the Internet in helping me know more about an illness, disease?
We live in a world of late doctor's appointments followed by hurried visits with our doctors. The Internet fills a gap in our understanding. Doctors don't know everything about a condition or treatment and with additional information our visit with our doctor will give us greater knowledge; especially, when trying to persuade our primary care physician to refer us to a specialist.
Keep in mind, you must discuss what you learn via the Internet with your doctor. S/he has been keeping record of your health over a period of time and can help to put into context what you've learned online.
A personal example will illustrate. Earlier this week I went to my primary care physician to inquire, among other things, what I could do to alleviate the worsening of my hot flashes. Late last year, the endocronologist (doctor who specializes in glands) suggested that I initially try an over-the-counter treatment. I did. My husband assured me after several weeks, it made things worse. So, I researched online, read a book, and talked with other women and learned about other over-the-counter treatments. Trying those, hubby insisted: "These treatments make your hot flashes worse!"
It was time to ask the doctor about prescption treatment options. He said, given my other conditions, there was no easy answer. In fact, he regretted that he had no answer for me; suggesting that I once again follow-up with the endocronologist to see if there was anything new.
How do we search the Internet for information about an illness, disease, or treatment?
What I usually do is search for the disease or illness using Google. You may use Yahoo, MSN, or any other favorite search engine When my neighbor was still fighting to survive prostate cancer, his wife shared some information with me that allowed me to search further on the Internet and provide her with additional information that she could share with her husband's doctors. Some of the search results took me to Wikipedia, others to WebMD. Whatever resource you use, remember, the information is not guaranteed; so, it's very important to consult with your doctor.
A caveat: Some doctors; particularly, specialists, get a little unnerved when you present them with the results of your online research. If your doctor is not open to receiving outside information, present the information piecemeal. Don't try to challenge your doctor with your newfound knowledsge and statements such as: Well, I was researching online and the consensus is that (name) treatment works 86% of the time and (your suggested) treatment has a 49% failure rate. (I hate to admit this, but there are people who gain so much confidence researching online that they talk like this with their doctors! This limits healthy discussion of options with any physician!) The best approach is to ask your doctor questions based on the information you have gathered. Use online information to know what questions to ask, so you and your doctor may have a more productive discussion about the condition and treatment options.
As Baby Boomer and patient advocate for The Greatest Generation, I believe we can no longer be submissive and obedient to every utterance from our doctors. Today, we are PARTNERS with our physicians in our own or loved one's care. Any quality physician who feels likewise will appreciate an involved (and respectful) patient/family member/advocate.
Brenda Avadian, MA, will be conducting a workshop entitled, TALK with your Doctor for family caregivers at the Win River Casino Eagle room in Redding, CA, tentatively scheduled for Wednesday 8 September 2008. Event co-ordinated by the the Mountain Caregiver Resource Center and co-sponsored by the Redding Rancheria.
Brenda Avadian's BIO
Please be sure to read Part I (July 29): Should you bring a friend or relative with you to the doctor's office?
and
Part II(August 1): TALK with your Doctor! (Part II of III) What should I do when the doctor speaks waaaay over my head?
Stop him/her!
One reason malpractice suits abound is lack of proper follow-up care when the patient and his/her family does not fully understand the doctor's instructions for the patient at home. When something goes wrong, neither the patient or the doctor is happy. Then, as often seems to be the case, lawyers step in to take advantage of an already awful situation and we begin moving away from better medical care to expensive lawsuits and doctors covering their a$$et$.
How can we avoid these misunderstandings?
Ask questions.
It is better to paraphrase, repeat, write down, and have the doctor listen to and read your words and hear your understanding of his/her recommended careplan, than risk your life.
Yes, doctors are busy and seem to whip in and out of appointments. But your LIFE depends on it. Stand your ground and be sure you understand fully what your doctor is recommending.
A personal example will illustrate:
After outpatient surgery, my doctor explained to me the careplan. I kept asking questions and he seemed rushed and didn't want to give me the time. Finally feeling pressured, I stopped asking and took what I understood to be the post-surgical careplan and what I could expect for healing.
Three days later, the wound healed closed and I began running a fever and eventually went into shock. Rushed to the medical center, I was given IV and oral antibiotics to stem the infection that had gone through my body, because the wound healed closed too soon.
I had to return to surgery, have the wound re-opened and cleaned out.
The time, I insisted that my husband, David, accompany me into the surgical room. David stood his ground with the doctor until ALL MY QUESTIONS WERE ANSWERED to my satisfaction.
At one point, the doctor asked if my husband was threatening him, because David blocked his exit to the door until all my questions were answered.
Your doctor's visit will usually not go to this extreme. (Let's hope not!) I've only shared my experience here, so you know how far you need to sometimes reach to avoid a fatality. If we didn't catch it in time, I could have died!
In Part III of TALK with your Doctor! we'll address the Internet and how good it is in helping you understand more about an illness, disease, and treatment options.
For information about Brenda Avadian, MA, please click on Brenda Avadian's BIO
It was hoped that bapineuzumab would clear toxic beta amyloid proteins from the brain, which cause formation of plaques seen to be a cause of Alzheimer's disease.
However, for the 30 to 60 percent of people with Alzheimer's who carry the ApoE4 gene (associated with an inherited form of Alzheimer's), bapineuzumab produced no statistically significant results. In a very few, some brain swelling occured.
For now, it's back to the lab...and Phase III trials.
For those of us who know how important it is to delay the progression of Alzheimer's--because the longer our loved ones can care for themselves the less the toll on family caregivers--we hope Elan and Wyeth can show more consistently favorable results in their Phase III trials.
Should you bring a friend or relative with you to the doctor's office?
Let me answer this by asking: Do you accompany your loved one to the doctor's office? If so, why?
Just like when you serve as your loved one's patient advocate, when it comes to your healthcare, you need someone with you who will ensure you receive the same level of attentive and quality care. (Assuming you don't keep putting off your appointments because you're busy providing care for your loved one.)
We're not talking about your regular check-ups, here. (You should be scheduling these as a preventative measure.) We're talking about those instances where you've scehduled a follow-up visit or an appointment with a specialist.
No matter how strong we are, we seem to lose our nerve, focus, memory, or even ability to advocate for our own health while in the doctor's office. Yet, when it comes to advocating for others, we seem strong, articulate, and righteous in our efforts to secure attentive care for loved ones. A conscientious and heartfelt caregiver to her husband recently told me: You don’t know me. I can be a real B!TC#!
I cautioned her that even she may whither in the doctor’s office as she balances her own healthcare needs with remembering all the issues she needs to address with the doctor.
Why is it we forget when we're in the doctor's office?
Because in this rush-rush world, where the doctor seems to spend only five minutes with us after we've waited an hour-and-a-half, we're so happy to see him/her, we don't want to take too much of his/her time. Now, this doesn't make sense when you're reading it, but most of us are guilty. It seems to be human nature and this is why we need a level-headed advocate to accompany us.
One important key is to keep a list of things we want to address when we see our doctor. Keep this list in the same place--in your health file, your appointments file, or even on the computer in your Outlook calendar. Whatever you do, make sure you'll remember to bring it on the day of your appointment. If your doctor sends you a reminder postcard, like my dentist does, write a note on the card to remember to bring your notes. (I usually write notes in the notes section of the appointment recorded in my Outlook calendar. I then sync this to my handheld computer and refer to this during my appointment. Even I forget things, unless I refer to these notes.) This way, you'll be sure to cover all the issues you thought of during the weeks leading up to your appointment.
You do this for your loved one, right? It's time you do it for yourself.
In Part II of TALK with your Doctor!, we'll cover what to do when your doctor says something you don't understand.
I made her contest a little more special and submitted a surprise offer to answer one question from the winner.
The question? What is the one decision you struggled the most with, and in hindsight do you wish you had made a different decision or do you think it was the “right” decision?
For the answer, click on: Alzheimer's Notes
Here are the numbers I'm looking at:
China's over-60 population hovers around 150 million--a little less than 50% of America's total population!
There's a less than 1 in 10 chance a person over the age of 65 (note, not 60) in America will have Alzheimer's.
Applying this to China's population--how different are the Chinese, really?--and with no solid evidence of Alzheimer's afflicting a different percent of people over 65 worldwide (note again, not 60), we're looking at an estimated 12 million Chinese (estimated lower since the near 1 in 10 chance is for people over 65) over the age of 60 with Alzheimer's.
Now, add China's estimated 12 million to the US's 5 million (10% of these are in California) and let's throw in UK's 0.7 million.
We're already at 17.7 million, worldwide.
The World Health Organization estimated 18 million about a decade ago. Today, leading organizations cite 26 million (a 44% increase…YIKES!)
Let's take this a step further...China's population is around 1.3 Billion and India's is estimated at 1.1. If India's demographics are similar, India is looking at about 10 million cases of Alzheimer's.
We’re already at 27.7 million cases of Alzheimer's worldwide…and we haven't even counted all of Europe (western and Eastern), Indonesia, the Arab world, Africa, the rest of Asia and more!
These are COMPELLING numbers and caregivers have a lot of work ahead unless there's a cure.
Isn't it time we start spending our nations' funds on areas that give our elderly quality of life? After all, it's been said (paraphrase): A nation is judged by how it treats its older citizens.
WHAT DO YOU THINK? Please let us know at BLOG@TheCaregiversVoice.com
Amazing how similar the effects of hynotism are (as noted in this article) and how the hypnotized justifies his behavior just like those with early to moderate Alzheimer's.
There are also valuable lessons here on how we come to hold onto our beliefs and are controlled by them, whether we reazlize it or not (often not)!
This was a day to lift caregivers' spirits with humor and strengthen their resolve with knowledge before returning to their loved ones.
I believe we must find the JOY in life's challenges. We have this choice--to let the burden of caregiving get us down or to look for those precious moments that bring a smile, or if we're lucky, make us laugh. Caring for a loved one with with Alzheimer's means we have to look harder for the joys as they get smaller and smaller as the disease progresses. Still it's the only way we will survive and hence, the title of my presentation: “Can I survive as a Caregiver? And, by the way is it too much to ask for a sprinkle of Joy?"
Three speakers followed my presentation. Two offered creative ways to deal with stress--e.g., say "Yes" because our brains don't recognize the negative. One speaker shared details of what to look for when hiring in-home care.
Jim Walker, Features Editor for The Signal summarized the key points here.
Fiona King of RNCentral.com sent me an alert of an article posted to their website: 50 Communication Tips and Techniques for Caregivers authored by Jessica Merritt.
The 50 tips are grouped into (paraphrased) five categories: 4 Tips on Communicating with a Person who Suffers from Memory Loss 5 Tips on Speaking with your Care Recipient 8 Tips on Enabling your Care Recipient to Pay Better Attention 6 Tips on Ensuring you Communicate Effectively Nonverbally 10 Tips on How to Behave with Your Care Recipient 17 Tips on Communicating with Others--e.g., doctors, family members, insurance
Check it out at
