Tag Archives: alzheimers

Sharing an Alzheimer’s Disease Diagnosis with the World

Should people suffering from Alzheimer’s disease share their dementia diagnosis with family, friends, coworkers and employers? Certainly there are pros and cons to be carefully weighed when faced with a terminal illness having a negative social stigma attached to it, one of vulnerability, weakness and outright fear. After all, no one wants to deal with the cognitive decline and eventual death sentence of a loved one or acquaintance.

Disadvantages of disclosing an Alzheimer’s diagnosis might include jeopardizing a person’s job or alienating them from those ignorant about the disease. On the other hand, benefits of disclosure include bringing more awareness of the disease to the general public, generating additional support from the community, and finding inner acceptance that might pave the way for helpful treatment options to slow the progression of the disease while improving the quality of precious time that is left.

Ronald Reagan, Charlton Heston and Glen Campbell felt full public disclosure of Alzheimer’s disease was the proper course of action, using their celebrity to raise awareness for an illness fraught with uncertainty and impending doom. Others in the past just receded from public life, including Rita Hayworth, Barry Goldwater, Perry Como, Charles Bronson and a long list of other celebrities who privately battled dementia.

My own mother chose to deny her progressing illness and refused to ever discuss her obvious mental decline with family or to seek medical treatment of any kind. I would have much preferred to share her illness openly and support her along the way; it would have made our final years together less stressful and her death more tolerable.

For that reason, I greatly admire those who decide to publicly announce their Alzheimer’s diagnosis for their bravery and awareness efforts, people like Ronald Reagan and most recently Glen Campbell. Just like with cancer, there is much time left to focus on living with Alzheimer’s after a diagnosis.

What do you think? Should an Alzheimer’s disease patient openly share their illness with the world, or should they keep their condition private?

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Image by Life Supercharger

The Best Gift for Dementia Caregivers is Time Off

Caregivers want the gift of time or respiteI read a beautifully written letter in Dear Abby recently that plainly states what it is that Alzheimer’s caregivers need most. “A Friend of Yours” writes the following from which we can all learn as we try to support those caring for loved ones afflicted with dementia:

DEAR ABBY: My wife has dementia. Our children don’t live close by, so I’m her only caregiver. One afternoon a week I hire someone to stay with her so I can grocery shop, do banking and run necessary errands. Neighbors and friends over the years have offered the standard, “If I can do anything to help, let me know,” but I’m not the type to call and ask, although it would be wonderful to have more hours to myself to do things in a leisurely manner rather than like running a marathon.

I know people are busy, but it would be great if some of those who offered help would call occasionally, tell me they have an afternoon or evening free (or even an hour or two) and give me a little breathing room.

I don’t begrudge one moment of the time I have spent caring for my wife. She has, for 50 years, been a marvelous wife, a wonderful mother and the center of our family. Whatever I do for her can never repay the comfort, strength and joy she has brought into my life. But I cried (privately) on Christmas Day after the family had finished our gift exchange, because I had no time to go and buy her a gift.

Please advise your readers that if the offer of help they extend is real, to please check their schedules, find some time they are willing ot give, CALL that friend, neighbor or relative and offer to sit with their loved one. That thoughtful gesture will be appreciated beyond what they could possibly ever imagine. – A FRIEND OF YOURS

I think most caregivers feel this way; they are unwilling to ask for the help and the time off they so desperately need. The next time you wonder how you can help a friend who is an Alzheimer’s caregiver, just pick up the phone and tell them you are coming to help and don’t take no for an answer. You will be supporting them more than you will ever know, and it could be the start of a beautiful relationship for all of you.

Along the same lines, I’ve just found a list of “Caregivers’ 8 Least Favorite ‘Helpful’ Comments” noting things you should never say to dementia caregivers. Avoid saying these things and instead offer your time for a gift that will be appreciated more than anything else.

Letter courtesy of Dear Abby
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What is Dementia? Watch Unthinkable, The Alzheimer’s Epidemic May 1, 2011

I’ve already set my DVR to record the Larry King special on CNN tonight called Unthinkable: The Alzheimer’s Epidemic. This one-hour special will look into Alzheimer’s disease, who gets it and why, and the race to find effective treatments and a possible cure. The TV program airs May 1, 2011 at 8 p.m. ET on CNN and is really a must-see for those affected by Alzheimer’s or anyone who wants to learn more about this “disease of the 21st century”. I will share my own personal thoughts after I’ve had a chance to watch. I’d love to know what you think too, so please leave a comment if you get a chance to watch this program.

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Dementia Prevention: How to Avoid Alzheimer’s Disease?

If you have a history of dementia in your family, what exactly can you do to prevent getting Alzheimer’s disease yourself? I struggle with this question and try to keep up-to-date on the latest medical news on the subject since my mother died from early-onset Alzheimer’s disease two years ago. I just read an interesting article about Trudie Styler in the London Evening Standard that helped to substantiate my own thoughts on prevention. Turns out that Trudie Styler’s mother died from Alzheimer’s disease also at age 60 after being diagnosed at the early age of 54, leaving Trudie with the same question nagging her continually, “What can I do to prevent getting Alzheimer’s disease?” Here is what Trudie herself said in this article about her mother and the looming threat of Alzheimer’s:

She never met her grandchildren. I’m very traumatised by my mother’s early death. I have to say to myself, ‘What can I do to circumvent Alzheimer’s?’ Unlike cancer, there’s really not a lot of literature out there.

Trudie’s answer is physical and mental fitness along with eating healthy food. I admit I probably don’t eat as healthy as Ms. Styler, but I do avoid highly processed foods and limit my sugar intake. I agree completely about the importance of physical fitness and exercise religiously three to four times a week while maintaining an active lifestyle. My personal plan of attack also includes vitamins and supplements, and lots of them; I gobble them daily like a kid eating candy, changing and switching the doses and types based on each new study and recommendation. My most recent addition has been folic acid.

Only time will tell if these strategies are effective for any of us, and after all is said and done there are still variables completely out of our control. But at least it feels good to maintain positive lifestyle modifications that are also good for our overall health and well-being. Staying mentally acute by learning new things, exercising regularly and eating healthy will provide lots of other benefits in our lives as well.

What about you? If dementia runs in your family, what are you doing to stack the cards in your favor?

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Photo and quote courtesy of London Evening Standard

An Alzheimer’s Birthday Timeline

My eldest daughter Sarah just turned fifteen; she was born in January of 1996 on an unusually warm and sunny winter day. While I marvel at how quickly she has grown and burst with pride at the beautiful young lady she has blossomed into, I can’t help but associate her life with Alzheimer’s disease. 1996 was the year my mother began showing significant symptoms of dementia, and I struggled with the adjustments of parenthood and the realities of my mother’s developing illness at the same time. The emergence and progression of Alzheimer’s disease unfolded like a tragic play against the timeline of my daughter’s life.  And now her birthday is an annual reminder of how long this devastating disease has been an unwelcome guest in all our lives.

1996 – my daughter is born, and Alzheimer’s becomes a suspect
1998 – my daughter is two, and Alzheimer’s is evident
2000 – my daughter is four, and my mother is diagnosed and institutionalized
2002 – my daughter is six and can no longer visit my mother due to her hostility
2006 – my daughter is ten and her grandmother is a stranger
2009 – my daughter is thirteen, and Alzheimer’s has finally claimed my mother’s life

Fifteen years living in the shadow of Alzheimer’s disease is a long time, but it is only the beginning. Anyone affected by Alzheimer’s disease will carry this experience with them for the rest of their lives, for as long as they have the cognitive ability to remember.

Happy birthday darling Sarah. My birthday wish for you, silently repeated each year while gazing upon a star in the winter sky, is a world without Alzheimer’s disease.

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Baby Boom Generation Now Faces Alzheimer’s

2011 marks the sixty-fifth birthday of the first people born into the generation known as the baby boomers, a massive group of babies born following World War II between the years of 1946 to 1964.  As these seniors continue aging, they will become much more susceptible to Alzheimer’s disease. And with approximately 79 million baby boomers located within the US, the staggering increase of Alzheimer’s patients is estimated to overload the healthcare system and caregivers in the next twenty years.  The statistics are overwhelming.  Currently 1 in 8 people age 65 and older are estimated to develop Alzheimer’s. For the US boomer population alone, that means nearly 10 million of them will develop Alzheimer’s disease in the next twenty years (do the math yourself: 79 million divided by 8 equals 9.875 million), double the current number of US Alzheimer’s sufferers at 5.3 million. A boomer epidemic is indeed on the way.  As the babies surged sixty-five years ago, so will the Alzheimer’s victims surge over the next twenty years.  The question is whether or not we will be ready to care for these people physically, emotionally and financially.

I do not fall within the baby boomer generation, but my husband does.  And I’ll be heading towards my golden years right after the boomers.  For that reason, I will continue to do all that I can to support those searching for a cure by raising awareness for Alzheimer’s disease and donating financially.

When Teens Are Caretakers

I read a great article in my local newspaper today written by a teenager named David Marshall who helps take care of his grandmother suffering from Alzheimer’s disease.  I just wanted to say “bravo” to this young man for compassionately offering to help his parents care for an afflicted member of their family. This is a difficult job requiring a great deal of sacrifice, and this young man is learning important lessons that will stay with him for the rest of his life, as he has already discovered.

Living with an older person with Alzheimer’s has changed the way I look at aging and at the responsibilities we have in regard for our parents and grandparents.

You can read the article “When Teens Are Caretakers” by David Marshall from the State Journal-Register here.

Reference and image courtesy of the State Journal Register December 14, 2010
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Book Review: Finding Life in the Land of Alzheimer’s

I’ve recently finished reading the book Finding Life in the Land of Alzheimer’s by Lauren Kessler and found it an interesting exploration of professional caregiving for Alzheimer’s patients. After feeling guilty about her own mother’s care and death from Alzheimer’s, Lauren Kessler decided to go work as a resident assistant as penance to gain a better perspective of the disease and its victims. She relates all the dirty details of the backbreaking job and the bizarre tendencies of the care facility residents.

I already know how hard the job of a resident assistant is after watching them care for my own mother for nine years, but I always thought their official job title was CNA or certified nursing assistant. This book shined more light on the difficulties of their duties and working conditions, making me admire them even more. It takes a special person to continue caring for Alzheimer’s patients as a long-term career, and many times I marveled at their compassion, tenderness and patience, knowing I couldn’t do the same job nearly as well for any length of time.

I see my mother reflected in some of the Alzheimer’s patients described in this book, along with strange behavior I also witnessed in many of the other Alzheimer’s residents my mother lived with at her nursing home. I like the way this book shows Alzheimer’s patients are still people with feelings and the ability to relate in some way, if only momentarily, to the real world. This belief is expressed most poignantly through one Alzheimer’s patient named Rose, one of the most deeply demented residents who surprisingly turns out to still be an excellent dancer responding to music.

Check out Amazon for more information on Finding Life in the Land of Alzheimer’s.

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Difficult Decision Regarding Alzheimer’s Patients and Driving

One of the most difficult decisions regarding the care of a loved one suffering from Alzheimer’s disease is determining when they need to stop driving. I am painfully aware this is a controversial topic setting off heated debates about individual rights versus public safety. But if the question, “I wonder if Mom should be driving anymore?” is running through your head or spoken aloud (with your loved one’s name used, of course), there is a pretty good chance your Alzheimer’s patient should not be driving any longer.

The internet has an abundance of information regarding Alzheimer’s and driving (see following references), and the bottom line is that eventually all Alzheimer’s patients will need to stop driving due to mental decline. While no one argues this point, the problem is deciding exactly when the time is right to take away this privilege that most adults take for granted.

Safety outweighs individual rights and independence, and not just the safety of the Alzheimer’s patient, but the safety of innocent bystanders. I like the advice offered from the Mayo Clinic on this issue:

“If you’re not sure whether it’s safe for your loved one to drive, ask yourself whether you feel safe riding in a vehicle driven by the person who has Alzheimer’s — or if you’d feel safe having your loved one drive your children or others. If the answer is no, then you know it’s time for him or her to retire from driving.”

Think about it, if you would not allow your own child in a car with the Alzheimer’s patient, then that person certainly should not be on the road jeopardizing the safety of anyone else’s children either.

When the time does come to stop an Alzheimer’s patient from driving, enforcing that decision can be worse than making it, as I know from experience. Once again, there are many good tips on how to do this: prepare alternative transportation for the Alzheimer’s patient’s needs, get a doctor or authority figure to insist the patient stop driving, have the state require a driver’s test, remove or disable the car, or hide the keys.

All great ideas, but sometimes a difficult Alzheimer’s patient will defy all these efforts due to the very nature of the disease, denial of illness, or sheer stubbornness, as my own mother did. I can say with certainty that taking away my mother’s car was the most difficult issue my family had to face regarding her care, even though we diligently planned and prepared for the task. Within five days of her car being taken away, my mother could not understand or accept the loss of her freedom and spiraled downwards into depression and suicidal threats that forced her involuntary admission to the hospital. That same hospital stay required her subsequent placement into a nursing home after the confirmation of her Alzheimer’s diagnosis and advanced condition mandated 24-hour supervision by doctors. Needless to say, my family wasn’t prepared for any of this at the time and had no idea taking her car away would snowball into institutionalization.

For that reason, the decision to take away the driving privileges of an Alzheimer’s patient can be fraught with unexpected difficulties that need to be carefully considered before any plan is undertaken. The reactions of an Alzheimer’s patient threatened with the loss of their independence cannot fully be estimated due to their mental instability, however necessary the course of action. As an Alzheimer’s caregiver, you have an obligation to do the right thing for the safety of the patient and others. Along with all the other tips offered to make a smooth transition, be sure to line up medical professionals ready to offer assistance if plans go astray for reasons you cannot anticipate.

References: Mayo Clinic, Alzheimer’s Association, MSNBC
Image by PhotoDu.de
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Preventing Alzheimer’s with Katie Couric and Author Jean Carper

Just watched an interesting Katie Couric interview with author Jean Carper, who has written the book 100 Simple Things You Can Do To Prevent Alzheimer’s. The book specifically suggests things you can do to slow down the onset of SYMPTOMS, not prevent getting the disease itself, for people without symptoms who already know they are susceptible to developing Alzheimer’s disease. Some tips include:

  • take a multi-vitamin, folic acid, DHA, and B12 supplements
  • foods – eat berries, apple juice or apples, fruits, vegetables, coffee
  • alcohol – low intake daily, 1 glass of red wine
  • exercise – 30 minutes of aerobic exercise a day
  • mental stimulation – with challenging activities, learn new things

I already know I’m susceptible to Alzheimer’s disease, so I just might want to check this book out for some more tips!  Click the following link to watch the 30 minute interview.

http://www.cbsnews.com/video/watch/?id=6950869n&tag=contentBody;cbsCarousel

References: CBS News @KatieCouric
Image: JeanCarper.com
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