Hello all you fabulous caregivers! I have been taking a bit of a break from writing the blog for a variety of reasons. But, I didn't even post this year on World Alzheimer's Day (September 21st), for the first time since I created the blog 5 years ago. Why, you ask? Because I just couldn't make myself put forth the staggeringly scary statistics about how often someone is diagnosed or about the impacts to a caregiver's life when AD is diagnosed -- again. It felt so overwhelmingly negative that I simply couldn't do it.

Now, don't get me wrong. There's a lot of positive research happening, some of which I've been writing about since 2012, but it is now receiving mainstream media attention. For example, both music and meditation have been getting lots of attention, with the Veterans Administration now offering mindfulness meditation to veterans with post-traumatic stress disorder. There are more documentaries, more information flowing, more assistance to caregivers -- all that is truly a wonderful change. But, I felt like a voice crying in the wilderness when I wrote about the one thing that daughters caring for AD parents consider perhaps the most distressing of all when they see their loved one deteriorate before their eyes: will I also have this disease? It's a natural and unavoidable question when we see first hand the ravages of the disease.

Until now, the widely promoted information is that Alzheimer's has no cure, and there's nothing much we can even do to slow it down. Grim, right? However, I know there are things we can do to prevent it (check out the rest of this website for that info) and finally, here is some validation that it can also be reversed. Yes, I said reversed.

I discovered a series that is airing online right now, for free. It's called Awakening from Alzheimer's and offers video interviews with a dozen experts in various medical and research fields on all kinds of topics related to prevention and reversal of AD through often simple things that most of us can easily do to improve our health, cognition, and well being. In fact, this series has a huge arsenal of tools and some starling new information to empower us to do exactly that. The subtitle, "Where Alzheimer's meets hope" expresses it perfectly. Hope. We all need hope. This information will serve both you and your loved one with AD. Nothing to lose, as it's free, and everything to gain. Check it out. The series is on Day 4 now, so jump on getting registered.
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I wish I'd had even a small bit of this information during my time as caregiver. But, I'm sure happy to have discovered it now. Even though it's too late to help my mother, I believe it can help millions. Please share it. Hope and empowerment are precious.

I just read an article published in The Guardian, titled "One Third of People Born in 2015 Will Develop Dementia" and I felt a shiver go through me - a mix of disbelief, dread and then a goodly portion of righteous anger. I think every single human with a beating heart who looks at the statistics, those cold, easy to ignore numbers, and applies them to the babies being born now can't help but cry out that we ALL need to do more to address this health crisis. There is a virtual tsunami of dementia coming if we don't find ways to stop it. It will swamp our healthcare system and there will be no where to escape it.

Research is, of course, necessary, and finally receiving some significant attention. But we can do more than that. Those who are children or caregivers of parents/elders with dementia know personally the devastating consequences that it can bring -- emotional, financial, in family relationships, in health of the caregiver. So, that multiplies the shivers by quite an exponential factor.

The truth is, there is almost NO one who is untouched by Alzheimer's in some way: whether it be a parent or grandparent, spouse, aunt or uncle, cousin or friend who is losing their personality and memory in excruciating pieces. Julianne Moore recently put a spotlight on the early-onset form of Alzheimer's in her award-winning performance in the film "Still Alice". And there are various groups vying for funds to support the cause in various ways. But I want to talk about what is within our power, each of us, as individuals, to defeat this disease. There's actually quite a lot that we CAN do, aside from shivering in disbelief.

Here are some of the most important, scientifically supported ways you can reduce your own risk of developing Alzheimer's disease:

1. Get adequate, good quality sleep--There's been a great deal of study of what happens in the brain during sleep. It turns out that our brains use deep REM sleep to empty the brain of "garbage" and to instill memories. So, this is one crucial thing over which most people have at least some control. Setting up a bedtime "ritual", going to bed and rising at the same time each day, avoiding caffeine and alcohol in the late afternoon/early evening, taking melatonin or herbal sleep remedies on those occasions when sleep eludes you. Also, avoiding the blue light from computer screens and electronic devices for a couple hours before bed (since that tends to reset the body clock's circadian rhythms and tricks your body into thinking it's morning). If you want more on this topic, please see my blog post: To Sleep Perchance to Dream. http://www.caregiverwellness.biz/wellness-blog/to-sleep-perchance-to-dream
2. Try relaxation, breathing exercises and mindfulness meditation. There is a 30-year medically researched body of data on the benefits of using meditation to reduce stress and clear the mind. This site has many articles on the subject if you peruse the categories on the right sidebar. I have made some personal recommendations for tools to use for helping to relax, let go, de-stress and find serenity. You can find them on the Research and Resources page, the Caregiver Support page, and in the Caregiver Store on this site. And here are some of my personal favorites for self-care ideas. Enjoy!
3. Eat a healthy, organic diet, cutting the carbs, and get out and move your body. Try yoga or Tai Chi. Do some combination of walking, bike riding or other cardio exercise, and avoid the sugar and pasta. I know. This is not for sissies. But there's ever more research pointing to the truth -- we've all been led astray in the low fat and fat free craze. It's actually carbs & sugar that are doing a number on our brains and adding pounds to our bodies. I refer you to Dr. David Perlmutter's recent books - Grain Brain, Brain Maker, and his Grain Brain Cookbook, for information and inspiration about how and WHY to change your diet. Now, I like chocolate and mac & cheese, and spaghetti as well as anyone, but after reading the serious research about what these foods might be causing -- well, it does make it a bit easier to limit them, if not completely give them up.

I'm going to stop here, though I could go on at length. The information is here, on this website and many others. I really implore you all to take your power back and act on that which you CAN control. Type II diabetes is at epidemic proportions, and this is something we can treat and reverse. 

So today, in honor of World Alzheimer's Day, won't you make a commitment to your own health and happiness by taking some steps to avoid Alzheimer's yourself? Do it for your own benefit and also for those who love and depend on you. Do it for your children to set a good, healthy example for them so they don't become one of the three people who will develop dementia. Whatever reason inspires or motivates you, just do it!

I believe we all have the right to know what is in our food. Especially when there is evidence that GMO's are carcinogenic and can also be linked to neurological diseases such as Parkinson's,  Alzheimer's and autism. Please share this video widely if you also want to know what's in your food. Just label it!

This is a beautiful tribute to those who have been lost to Alzheimer's -- some were a surprise to me. There are also some who are currently fighting the battle against this devastating disease. We need to keep the 5.4 million people in the U.S. and their approximately 15 million caregivers in our hearts. We need to remember those who forget and those who are caring for them - all the lives touched by Alzheimer's.
Please watch and share to raise awareness...

I decided to repeat a prior post, because it is more pertinent than ever for caregivers trying to manage care for a loved one in the hospital, nursing home or rehab facility. Please feel free to share your own hard-won experiences via the comments so that we can all benefit!


One of the most challenging caregiving experiences can happen, ironically, when your loved one is admitted to someone else's care:  ie.  the hospital, rehab or nursing home.  In my own 17-year caregiving journey, my mother was only admitted to a hospital three times, two of those during the last 7 months of her life.  Each time it was very traumatic (for both of us!), but what I found so stupefying was the total inconsistency of the quality of care.  The difference was dramatic, both from hospital to hospital and even from floor to floor of the same hospital!  It covered the whole spectrum between basically decent to almost criminally negligent.  From these experiences, which I will not share in gruesome detail, I found three nuggets of truth to be evident:
  
1)  Hospitals are not good places for the elderly, and are especially bad for those with any type of dementia. Anytime someone is in pain or physical distress, it clouds their thinking capabilities, and if drugs are given, they can intensify this effect.  Same goes for the changes in routine, unfamiliar surroundings and upset in sleep patterns that happen in hospitals.  In fact, according to a recent study, a hospital stay can actually be a causal factor, triggering dementia in the elderly, if delirium is present during the hospitalization. The article in Science Daily explains the long-term effects and also gives some ways to help avoid delirium and consequent cognitive decline: Delirium and Long-Term Cognitive Decline in Alzheimer's Patients Linked in New Study 
  http://www.sciencedaily.com/releases/2012/08/120820161009.htm 

So, for the sake of all concerned, take whatever steps are possible to minimize or altogether avoid hospital admissions.  For example, during one emergency, I waited with my mother for over 5 hours in the hospital ER waiting room, only to find there were still several people (and hours of waiting) ahead of us.  Because I knew Mom was in a weak and debilitated condition, getting worse by the minute, I called the local walk-in clinic.  They had no one waiting, took her in within two minutes of arrival, examined and treated her in less than an hour.  She improved dramatically by the following day, when I was able to get her in to see her regular doctor.  We thus avoided what would have likely been an unnecessary hospitalization.  That was a very valuable lesson.  Obviously, you have to use best judgement as to the severity of the problem.  It's always best to call 911 if you have a true life-threatening emergency, but consider the risks against the benefits for less threatening circumstances.  

Another time, we waited over 11 hours in the emergency room, much of it with me sitting on a cold hard floor next to her gurney because they didn't "allow" family to be in there.  I had to explain repeatedly that her mental status required my presence, since she couldn't answer questions or give a medical history.  They eventually brought me a chair when they realized I wasn't going away, no matter what they said.  (This was less an act of kindness than that they just got tired of tripping over me).  This marathon ER experience happened in 2003, and I truly hope that hospital staff has become more aware of and sensitive to the needs of elderly dementia patients to have their caregivers present in these very upsetting and frightening situations.

2) The elderly are at risk for falling in many cases, and that risk increases when they are in a hospital setting.  In fact, my mother's first fall, after living with us for nearly 8 years without a mishap, was when she was in the hospital.  She was disoriented, on IV and yet managed to get out of bed to try to get to the bathroom on her own.  She fell, but thankfully was only banged up a bit and didn't suffer any major trauma or broken bones.  It was a wake up call for me!  So, my advice would be to stay with your loved one as much as possible, and if you can afford it, hire extra care so that someone is in attendance when you cannot be there.  If you can't afford this (it's quite expensive!) you can arrange for friends, church members, and/or other family members to volunteer so that there is adequate coverage.  You will need to see to personal hygiene, such as brushing teeth (or cleaning dentures), shaving, putting in and removing hearing aids, and sometimes even bathing your loved one, depending on the staff (or lack thereof) in the particular facility.  But don't expect the care to just happen.  It won't.  Doing it yourself insures that your loved one's basic needs are met and they can be comfortable.  I also believe it helps them tremendously to remain "in touch" with you, quite literally.

3) And lastly, do whatever you must to "catch" the doctor while making rounds.  Be sneaky, lie in wait.  This may require being in the hospital room by 7 am or earlier, since many doctors do rounds before starting an office schedule.  Ask the nurses what time a doctor normally sees patients and make your ambush plans accordingly.  You want to communicate, question, understand treatment plans and diagnosis/prognosis.  A new trend in so-called "care" involves having a "hospitalist" -- a doctor that is specifically assigned from a practice to care for all hospitalized patients from that practice.  This makes absolutely no sense, since the attending physician may know nothing about the patient, having never seen them prior.  If there is dementia or even just normal disorientation resulting from the injury or illness requiring hospitalization, the patient can't give vital information to assist with treatment or diagnosis, nor can they, in the case of Alzheimer's, even answer the most basic questions.  This becomes downright dangerous to the patient, and I'm sure is frustrating for the doctor, too.  Hence my advice to lie in wait if you have to, in order to ask questions and interact with the doctor in person.  It is my firm belief, after witnessing some harrowing hospital horrors, that everyone needs an advocate to intercede on their behalf.  As an advocate, you need to be very clear and specific in asking about any drugs that are being given, or considered, and what the risks vs. benefits are, as it can be a devastating ordeal if inappropriate medications are ordered.  Case in point:  Anti-psychotic drugs, such as Haldol (halperidol) are all too often given to Alzheimer's patients with sometimes deadly results.  I have personal experience of this with two elderly relatives.  The consequences were tragic.  

There is an excellent blog post on this very subject at the Mayo Clinic Alzheimer's Caregiver Newsletter, which I will share here:  http://www.mayoclinic.com/health/antipsychotics-and-alzheimers/MY02213/ 
Forewarned is forearmed, though it is such a shame to have to think of a hospitalization in terms of doing battle.  Unfortunately, that is often the true nature of care in our present system.   To be fair, there are still a few rare, white knights disguised as doctors, riding in with the best ideals, and highest standards.  But, they are sadly more fictional than real these days.  If you are fortunate enough to find one of these very special health care professionals, give thanks, hold on and don't let go!  

The RCI is a service unit of Georgia Southwestern State University in Americus, Georgia, and combines advocacy, education, research and service in supporting caregivers by promoting caregiver health, skills, and resilience. The focus is on helping caregivers cope with chronic illnesses and disability across the lifespan. This includes such a wide range (everything from autism to cancer, Alzheimer's to traumatic brain injury) that to get a full representation, I suggest you take a look at their caregiver resources page: www.rosalynncarter.org/ which features over 100 links to information and assistance sites. The programs of outreach include the Georgia Care-Net Coalition, which represents 12 regions around the state and serves as a voice for caregivers, the REACH program for Alzheimer's caregivers providing training and support in partnership with other organizations in 17 states, and Operation Family Caregiver, which provides free, confidential support, counseling and training for military family caregivers in-home, or via telephone or Skype. If you or someone you know could benefit from this program, call for information at (229) 931-2034.

The Summit featured keynote speaker Elizabeth Dole, who spoke eloquently on behalf of the million (yes, million!) military caregivers who are valiantly trying to cope with the approximately 725,000 veterans who are returning from the battlefield with both visible and invisible injuries and disabilities, including post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). The urgent need is overwhelming the services the Veteran's Administration is able to provide, leaving so many families in dire straights. Elizabeth Dole has created a foundation to assist these many military family caregivers in coping with the crisis: Elizabeth Dole Foundation website

With Elizabeth Dole's inspiring and passionate words still reverberating in our hearts, there was a brilliant presentation by Gregory Fricchione, MD, Associate Chief of Psychiatry and Director Benson Henry Institute for Mind Body Medicine at Massachusetts General Hospital and Professor of Psychiatry at Harvard Medical School. Dr. Fricchione's presentation was simply amazing in its depth, scope and brilliance as he related very technical evidence of how the very evolution of the human brain over 120 million years influences those suffering PTSD and TBI. He communicated this complex information in such an accessible way and with humor and compassion that I found it truly engaging. I couldn't miss the comparisons of battlefield stress disorders with some of the same symptoms exhibited in the chronically stressed caregiver. Dr. Fricchione put it in context that was understandable and also hopeful. His funniest points were about the greater adaptability of slime mold (as compared to the human brain) and also, his opinion that the canine species was infinitely superior in unconditional love. (I think I agree with him about dogs! He even showed a video clip of his dog meditating - definitely a higher species!) I was vastly reassured that such brilliant researchers are bringing light to the issues we are facing. If you'd like more about this, his slide show may be found through a link on RCI's homepage for more Summit info. Without his charming quick wit and personality, it just isn't the same!

I was so impressed with the excellence of the programs and the caring compassionate hearts of the people involved. I met people from all over the world who are each working in their own way to support caregivers. There was such an atmosphere of hope, collaboration and cooperation and the convergence of politics, education, public support, private corporate sponsorship, recognition of excellence, community outreach and caring hearts -- I have never seen the like before. How could one not be inspired and uplifted?

No matter which of the above four categories outlined by former First Lady Rosalynn Carter you may fall into, there is little doubt that your life has been affected by Alzheimer's -- either through a family member, friend or spouse. I won't bombard you with statistics, since they are all over the media airwaves, thankfully so! But I want to point out the there are over 65 million family caregivers in the US alone, mostly women, struggling along as the unsung heroes or sheroes, as the case may be, who deal with this disease or others, daily.

I want to let you know that they need your help. Yes, I'm talking to YOU! This is not a disease which will allow cheering from the sidelines. You're going to have to get down and dirty, and maybe take a few hard knocks for the team and almost definitely get out of your comfort zone. If you know anyone who is dealing with Alzheimer's, for heaven's sake, help them out!


Here are some things you can do:

1. Give them a huge hug and a warm, sincere "thank you" for their love and care. Let them know you acknowledge how tough it can be. It will make both of you feel better.
   
2. Offer practical help: a couple hours of respite care so they can go to a movie or shopping or take a nap. Do their laundry at your house and deliver it clean and folded. Take their children out for an afternoon of fun at the park or zoo to give those "sandwiched" between elder care and child care a break on one end of the caregiving spectrum. Find information about resources available in your local area for support, respite, help and give them to the caregiver with encouragement to help them follow through.
  
3. Take a walk to end Alzheimer's on Saturday, October 19, when the Alzheimer's Association is sponsoring a national fund-raising event. Click on the Alzheimer's Association link above to sign up. Get your company involved in matching donations raised (if you work for a company so inclined).
   
4. Help start a Memory Cafe in your community. Here's a "Toolkit" guide for this very worthwhile project and more information about how successful they are and how easy it is to bring better quality of life to those with dementia. There are currently about 80 Memory Cafes around the US, mostly grassroots local efforts, and so very helpful to caregivers and those with dementia. The concept is really taking off in the UK, with excellent support from the government. Here, unfortunately, we have to do it ourselves.
   
5. Be an advocate for creating dementia-friendly communities, so that caregivers can take their loved ones out to a restaurant, shop, church, or other public event without feeling the terrible stigma that tends to pervade uninformed environments. It isn't that people aren't willing to be dementia-friendly. They simply don't know how. Educate yourself, then educate others. See the excellent resource "Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship" by John T. McFadden, M.Div., Chaplain at Appleton Health Care Center in Appleton, WI)

6. Practice the Mosquito Principle: "If you think you're too small to be effective, you have never been in bed with a mosquito." So, go ahead and be annoying to the decision-makers who can help to fund the end of Alzheimer's. Bother everyone you can think of and be very persistent in your efforts to help caregivers at the end of their rope, dealing with Alzheimer's. You CAN make a difference. Practice being mosquito-like. It can actually be fun, once you get the buzz, er, whine of it!

7. Introduce folks to this website which has a depth of resources, links, tips, advice and sanity-saving humor to help caregivers maintain their own well-being. There are helpful ideas about using music, meditation, aromatherapy, self-care, inspiring books, personalized playlists on iPods with www.musicandmemory.org, and so much more at www.caregiverwellness.biz.

8. Lastly, practice outrageous acts of kindness and caring for the people you love, and maybe for strangers, too. Use the Pay it Forward concept. Reach out and offer your support in big and small ways. Be vocal, be an activist, be a pain in the patooti, but be involved. If we are not, who will be?

Throughout my life, I have come to know a deep spiritual truth: We are all connected. According to Chief Seattle, "Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things are bound together, All things connect".

To me, this connection called the web of life means that every action we take (or avoid taking) has an impact somewhere, either within our own lives, on other life forms, or upon our environment. This idea has been reiterated by many wise poets, writers, philosophers and theologians, so it is not new. However, I think it applies even more strongly to the relationship of caregiver to care receiver. I'm speaking here of the quality of our caregiving experience, from both sides of the equation.

I've written in this blog of some of the negative consequences caregiving can have, in terms of the caregiver's health, happiness and sense of balance in life. All true. But I want to give some time also to the beautiful compensations, those incredibly precious moments of connection at the soul level, that can be a part of caregiving as well.

Every person and situation is as unique as a fingerprint or snowflake, so generalizing is risky. But I think this is a crucial part of creating a more serene, beneficial experience, so I am willing to go out on this limb.

In caring for my mother, I learned (sometimes the hard way!) that we were incredibly connected -- whether that was judged a good or bad thing was up to me and the perspective I chose. She responded to me on an almost psychic level at times, picking up on emotions and reactions of which I might be totally unaware. She often understood that something was upsetting me, even before I knew it! Though she could not always ferret out the correct reasons, she still related to me from this knowing. I soon realized I could not "fool" her into believing everything was fine if it wasn't. So, I had to clear my own mind and heart before approaching her. I could not hide behind a pretense or falseness. Mom spotted that immediately! She was like a dolphin whose echo-location scanned below the surface, all the way through my innermost self, and saw truth. It reminded me of times as a child when I believed Mom could tell if I was fibbing by looking into my eyes. Perhaps she could -- a mother's own type of radar or a truth-seeking missile.

There were several activities we did to nurture and connect us: music was a powerful device for this. We often sang together, watched musicals on DVD that were her favorites, and listened to hymns or songs by Nat King Cole, Bing Crosby, and other "crooners" from Mom's era. I wish that I'd known about the iPod Project (www.musicandmemory.org and on this site click here) in time to use that with my Mom. But, alas, I learned of it too late.

Another connection was found through flowers, specifically roses -- that lovely flower was Mom's talisman, since she grew a beautiful rose garden which she shared with her friends to uplift and bless them all her life, so it was perfect for reminiscing.

And, lastly, perhaps the most potent of all: simple loving touch. I used gentle, soothing touch with Mom every day -- putting lotion on her skin, gently rubbing her back at bedtime, using aromatherapy oils on her hands and arms, hugging her several times a day, touching her arm or hand as we walked, reaching over to pat her knee as we watched TV or in the car. I used touch along with giving her reassuring words, and loving eye contact. It was this that most often sparked a spontaneous "I love you", or "You're a little sweetheart" (her favorite term of endearment).

Now, in the interest of being completely candid, I must report that I am not a saint. There were days when exhaustion, lack of sleep, worries, distractions, stress or any number of other things got in the way of my being the best caregiver I could be. There were days I didn't much like myself for being tired, short-tempered, upset. I've had to figure out how to forgive myself for not being perfect, for not always knowing how to approach this huge job of being completely responsible for another life. Most days I can do that. I'm still working on it.

I wanted to share this, from my heart, because I know that the one thing caregivers often find in short supply is hope. Hope for a loving positive experience in caring for one they love. My advice is to create that hope and joy one moment at a time. Make this moment count. Use all your creativity and passion to connect through all the senses -- sound, touch, smell, sight and taste. Be present as a healing, loving being right now. Let the next moments and days take care of themselves as much as you can. And find the peace and grace of those beautiful compensations of caring -- one moment at a time.

Imagine:  You are lost in a world where words no longer make sense, when you only dimly know the faces around you, if at all (including beloved family members), and indeed where you may not remember your own past at all.  Your entire world has shrunk down to a dim, lonely place behind a dark curtain of dementia or depression.  Then, someone approaches you with a smile and friendly manner and places headphones on your ears and begins playing a song that you danced to with your sweetheart at your wedding.  The music immediately connects you to that pleasant past memory, to who you were at that time, forming an acoustic bridge that can span what words or touch may no longer be able to do.  Your eyes brighten, your toes tap, your lips curve in a smile and the words to the song come out of your mouth, which had forgotten how to speak.  The light in your soul begins to peek out from behind the dark curtain.  You may even kick aside your walker and do a little dance. 

Is this fiction or fact?  Well, in a 2008 project which provided 200 ipods to residents in four nursing homes in New York, it is fact.  And Dan Cohen, then man behind the project and founder of Music and Memory, is seeking to make it fact for millions more!  Mr. Cohen has pioneered the program Music and Memory with the goal of making personalized music the standard of care at all 16,000 nursing home facilities around the country.  If the viral Youtube clip of Henry, a 94-year-old nursing home patient who is transformed in an astonishing "awakening" to the music on the provided ipod, is any indication, this is an idea whose time has most definitely come! 

Mr. Cohen is using the power of the media to bring this transformative technology to all the elder care advocates, nursing homes, family caregivers, and others who can use it to transform sadness and isolation to toe-tapping joy and song with the implementation of a personalized playlist for people with dementia.  Cohen and his team are at work on a documentary (Alive Inside - www.aliveinsidemovie.com)  which features Henry and many others whose lives have been returned to them in part, by this power of their musical past and its impact on the brain.  Music and Memory and the Alive Inside documentary have been featured on numerous media, such as NPR, New York Times, USA Today, CNN, MSNBC, ABC, and The Doctors, and have completed a successful campaign on crowdsource funding site Kickstarter. 

Speaking as a daughter, a singer, and a caregiver, this is the most wonderful use possible of the gift of music to help our loved ones reconnect to their past, to bring them joy in the present, to make their lives so much richer and happier -- and all for the price of an ipod and some tunes and a caring person to put them together.  The Music and Memory website has a wealth of resource material to allow you to get involved at whatever level you choose -- from how to set up a playlist for a loved one with Alzheimer's at home, to running a donation drive for gently used iPods which they will refurbish for use in nursing homes.  Donate in whatever way feels right to you -- as a volunteer, by giving an old iPod to the cause, with financial support, and by spreading the word (and the music) on your social media such as facebook and twitter.  This is a chance to positively affect literally millions of lives.  Don't miss out!