An ounce of prevention is worth a pound of cure.
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.
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:
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
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!
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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