Personal Struggles
Crenezumab: a drug that might prevent Alzheimer’s.
In a NY Times piece, Testing a Drug that may stop Alzheimer’s Before it Starts, it was announced that a drug, Crenezumab, is set to be tested early next year on families who carry the single genetic mutation for Alzheimer’s – people who are genetically guaranteed to suffer from the disease years from now but who do not yet have any symptoms. Most of the 300 participants for this study will come from one extended family of 5,000 members in Medellin, Columbia who have been horrifically affected by this disease throughout their extended family.
This Colombian family’s story is presented in an astonishing video within the article’s link above. For decades, these family members started showing Alzheimer’s symptoms in their mid-40’s and the progression was so rapid that they advanced to full-blown dementia by the age of 51. The effects on a society, and a family’s dynamics, is eye opening to say the least. Let’s face it, in this video when a Colombian pre-teen is shown feeding his father, the role reversal is unmistakable.
The Study’s 300 family member participants will be years away from developing symptoms – with some being treated as young as 30 years old – but the hope is that if this drug forestalls memory or cognitive problems, plaque formation, and other brain deterioration, scientists will have discovered that delay or prevention is possible.
This drug trial has a long road ahead of it, but the study will be one of only a very few ever conducted to test prevention treatments for any genetically predestined disease. In an Alzheimer’s world where very little good news is forthcoming, it’s nice to see even a slight glimmer of hope.
Is Alzheimer’s a death sentence?
My Thoughts Right Now, May 11 Alzheimers Reading Room.
The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.
Dementia care is a very high station in life. That’s what Bob DeMarco believes, and so do I. Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task. Bob has indeed excelled and there are many of you for which the same can be said. I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you. My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.
Is Alzheimer’s an automatic death sentence? Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence. I think one of the reasons why so many believe that to be the case is that at this point, there is no cure. There are no thoroughly effective medications or treatments that cure it or stop it in its tracks. A person gets an infection? A regimen of antibiotics is prescribed and poof – the infection goes away. Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients. Not so with Alzheimer’s or other dementia.
There’s no such thing as a “former Alzheimer’s patient.” At this point, the only former Alzheimer’s patients are those who have passed on. If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.
“Surviving” a disease takes on an entirely new meaning. It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time. For that reason he can confidently say the following: “We did survive. We are survivors.”
Well done Bob and Dotty. You are beautiful examples of how to be a survivor when the odds are stacked up against you.
How to Break the News When It’s Alzheimer’s
How to Break the News When It’s Alzheimer’s.
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
Communication Tips from Individuals with Memory Loss Alzheimers Reading Room
Communication Tips from Individuals with Memory Loss Alzheimers Reading Room.
It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips. Please take the time to listen to this person’s voice.
Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage
Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage. Please check out this link, as well as those that I offer in my commentary below.
The above link provides a great article about a woman caregiver who found success using the confusion of Alzheimer’s to her advantage. (For background information on the people referred to in that link please look at an article about a talking parrot who in essence was the Assistant Caregiver for Dotty, a delightful woman with Alzheimer’s.)
The Alzheimer’s Reading Room article posted at the top of this page mirrors my own thoughts as provided in my article: Honesty is NOT always the best policy. If you’ve never been faced with the communication struggles associated with caring for someone with Alzheimer’s or other dementia then you may be unnerved by the approaches offered in my article and the article linked at the top of this page. If you have been faced with those struggles, however, you’ll probably support any communication methods that make your caregiving job easier. The caregiver benefits, and the one being cared for receives the outcome of those benefits.
BOTTOM LINE: It’s all about entering the world of the person with Alzheimer’s, rather than trying to force them into yours.
Blogger Awards for You and Me!
Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award. That’s the kind of feedback I like! More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.
I have been so blessed by the input I receive from the many Blogs that I follow. I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.) First of all the steps that the nominees need to take to award others who are worthy of singling out:
- Thank the person who nominated you for an award;
- Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
- Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
- Nominate your own choices for awards;
- Place links to their Blogsites so that others can view their fine work;
- Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
- My first name is Irene and I live in the Seattle, Washington area.
- I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
- My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
- I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities. In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
- I will always try to write something about which I am familiar and that I have also experienced. I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
- My mother died in 1994 and from 2004 thru 2007 I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.
Now onto the award nominations!
Versatile Blogger Awards:
Day by Day with the Big Terrible A (Alzheimer’s, of course.) This blog is very reader-friendly. This blogger is a wife who is taking care of her husband. Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle. I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!
My Simple C.com. This blog is an online community that seeks to connect professional caregivers with family caregivers. The resources and suggestions are quite good and are provided without the intent of selling anything. Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.
Elder Advocates. Lark E. Kirkwood experienced something that no one should ever have to experience. A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on. Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.
BEAUTIFUL BLOGGER AWARD.
Flickr Comments by FrizzText. This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world. Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.
Baby Boomer + Aging Parent = a changing paradigm.
Planning for a wedding? FUN!!!!!
Putting together an extended vacation to a tropical paradise? EXHILARATING!
Figuring out how to help mom and dad with their increasing care needs? UNEXPECTED!
A recent National Public Radio (NPR) Story: Preparing for a Future that includes Aging Parents addresses the unexpected, and the unplanned for. Whether because we’re kidding ourselves or we really believe it, we oftentimes can’t imagine our parents as anything but the energetic, robust, independent mom and dad with whom we grew up. And if we don’t live near them, we’re falsely sheltered in our assumption that mom and dad are doing just fine; at least they were the last time we saw them during the Holidays! If we’re honest with ourselves, however, we’ll admit that our infrequent visits with the parents shock us greatly as we notice a bit of feebleness in their manner, because as the above story states, “time does what it does.”
Surprisingly, only 13% of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report considered that the need for long-term care would affect their household. We love to live blissfully ignorant, don’t we? We have so many of our own stresses and pressures associated with running our family household, we’re just not going to entertain having to be on-point with our parents’ needs as well. Guilty!
I became a long-distance caregiver in the Seattle, Washington area for my father who lived in an all-inclusive facility called a Continuing Care Retirement Community (CCRC) in Southern Oregon. The first eight years he lived there were worry free because my father was one of those robust parents who was on the path towards living to a ripe old age. He did live to a ripe old age, dying at the age of 89, but from the age of 84 until his death, Alzheimer’s invaded our family’s peaceful existence, and I found that even as a long-distance caregiver, I was on-point 24/7.
Caveat: my parents had purchased long-term care (LTC) insurance so none of us three offspring were financially responsible for my father’s care. But anyone who has been a caregiver for a loved one knows that care isn’t always equated to monetary expenditure. In my case, the constant need to travel to Southern Oregon to monitor his care and be the designated (self-designated) sibling best equipped to coordinate his care with the facility’s staff, lead to my decision to temporarily leave my career, which was, coincidentally, one in the long-term care housing industry. By the way – the answer was not to move him up to the Seattle area. His financial investment in this CCRC up to that point rendered that an untenable option.
Even though I absolutely relished this opportunity to give back to my father – and I truly did – it was very difficult on my household and me. My health temporarily suffered. Everything I did revolved around being available for my father and hopping on a plane at a moment’s notice. I lived in a five year period of dreading the ringing of my home phone or mobile phone because it most likely meant that something needed tending. And getting home and finding NO voicemails in our phone system was cause for celebration.
But enough about me.
Are you prepared for the eventuality of attending to your parents’ care or are you already on that journey?
Or maybe you are already caring for a spouse with medical or cognitive needs. How are you managing that difficult task?
Let us hear from you. Not talking about it won’t make it go away. It’s time to face the piper and be as prepared as we can for the inevitable.
Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com
Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com.
An excellent article on ambiguous loss suffered by those who have a loved one with Alzheimer’s or other dementia. This is a loss that occurs in many stages and is no less traumatic than what one experiences with an unexpected, unanticipated loss. Perhaps such a loss is even more devastating.
What are your thoughts on this matter?
Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room
Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room.
One of the most frequent stresses I hear from those caring for a loved one with Alzheimer’s or other dementia is having to REPEATEDLY answer questions for which an answer has been given – numerous times. This article provides some tips on communicating with someone who is literally not on the same wavelength as you.
Adjustment disorder: a long-term care facility side-effect.
Think of a moving/relocating experience you’ve had with all of its inherent tasks of purging of items, packing what remains, and leaving all that is familiar as you move into uncharted territory. In your new neighborhood you’re starting all over again to find: new friends; a new supermarket with the best deals; perhaps the best school(s) for your children; a new church; and new ties to the community. Not exactly an enjoyable experience. It took you some time to adjust to your new community and feel that you fit in, didn’t it?
Now imagine doing the same thing as someone who is at least 70 years old with failing health, no family nearby, and perhaps with a compromised cognition level. Vulnerable adults move into a long-term care (LTC) housing environment because of a condition, or combination of conditions, that make living independently no longer an option. Because of this disruptive move, another disorder – adjustment disorder – makes their move a perilous one.
A loss of context in a new environment. In my work as an advocate for vulnerable adults, I had the privilege of hearing a wonderful speaker, George Dicks. At the time, Mr. Dicks supervised the Geriatric Psychiatry Service clinic at Harborview Medical Center in Seattle, WA. He was also a contracted instructor for the University of Washington, teaching courses on Gerontology, Psychiatric Consultation, and Mental Health. He emphasized that residents living in nursing homes and assisted living facilities struggle to look for context within their new environment. For example, context is hard to come by when your daily bath occurs at 2:00 in the afternoon instead of in the morning or evening as was the case prior to the move. And forget about finding comfort in routine because the demands on LTC staff are such that caring for numerous residents on their shift can’t possibly assure a routine on which the residents can rely.
Just providing care doesn’t mean that a staff person is caring. Everyone who moves into a long-term care facility will have difficulties, but those who are cognitively impaired face an especially arduous adjustment. As I previously mentioned, staff are hard pressed to provide individual care to their residents, and oftentimes are poorly prepared to handle the disorders that walk through the door. Just getting through their daily shift is troublesome so trying to learn the habits and routines that are so vital for quality of life of the resident with dementia is a very time-consuming task.
Quite frequently, the only contact a staff person has with a resident is when they are making demands of that resident: “time to take your medicines Mrs. Jones;” “let’s get that soiled clothing changed Mr. Smith;” “open your mouth Mrs. Clark so I can feed you.” Providing for basic needs is not providing care. Why? Because the staff are requiring something of the resident. There is no connection. When a staff person interacts with a resident, absent a provision of care, that’s a better definition of care.
How to lessen the effects of adjustment disorder. Those living in a long-term care housing situation oftentimes feel as though they left all their power, and all of their basic human rights, at the door. They are constantly surrounded with reminders of their condition – all those other residents who look as lost and helpless as they do – and it seems that the only time anyone pays attention to them is when someone is demanding something of them in the form of providing some sort of assistance with their care needs. If every staff person spent just five minutes of non-task-oriented time with each resident during their shift, those residents just might start feeling better about themselves.
- Walk with a resident for a few minutes by simply accompanying them in the hallway and reassuring them along the way.
- Play music the residents like in the common areas and in their rooms – and don’t assume that you know what they like to hear. Take the time to find out what gets their feet tapping.
- When you walk past a resident, greet them, smile at them, just as you would if you were in a social environment instead of a clinical environment. Again, do so even when you’re not providing a care service. Your friendly, heart-felt greeting may just make their day.
- Start a dialogue with residents that allows them to open up to you about who they are; what their lives were like prior to arriving at the facility. If you need to jot down some of their stories so you’ll remember them later, do so and continue the dialogue the next time you see them. Wouldn’t it be a pleasant surprise to a resident when you asked them, “Tell me more about your grandson Charlie. He seems like a real character!” Wow – you were actually listening, and it shows. Now you’re connecting with the resident.
If you are a staff person in a long-term care facility, can you put your grandma or grandpa’s face on your patients/residents faces thereby having a greater incentive to connect with those receiving your care? Or if that doesn’t work for you, do what you must in order to add an element of care to those you serve. Just because you’re helping the resident perform a task, doesn’t mean that you’re providing the care that they really need.
Music therapy: a key to unlocking the diseased brain.
Alzheimer’s and other dementia don’t hold a candle to the positive effect music has on its victims. The attached video, a brief portion from the documentary, Alive Inside, is entitled: “Music and Memory, an old man’s reaction to hearing ‘his’ music.” It illustrates so beautifully how music can unlock the brain that is addled by memory loss resultant from injury or disease.
I hope Henry’s story, and his dramatic transformation, encourage you.
Cost of Dying: planning for a good death, from advance directive to talking with your family
Cost of Dying: planning for a good death, from advance directive to talking with your family.
The article posted here is well worth the read. It is very comprehensive and reveals the nitty gritty of the decisions that are so important, and too often emergent, as we and/or our family members age.
When my husband and I set up our living wills/advance health care directives a few years ago, we did so as a living gift to each other. The attached article reflects that sentiment as well. With all of the details spelled out in advance, the surviving loved one is not thrust into an emergent decision that by its very nature holds one of the biggest responsibilities we can carry on our shoulders. To be sure, an advanced health care directive doesn’t take away all of the end-of-life challenges that occur but it does allow the surviving family members to feel at ease as they respect their loved one’s wishes that were expressly made known well in advance of the need for implementation.
Having these discussions with loved ones can be uncomfortable for some, but if framed in the guise of being a living gift to those left behind, the discussions take on a whole new meaning and can’t help but come out in a positive light.
Caregiving as a Baby Boomer – Joan Lunden’s experience.
Caregiving is not for wimps as is evident in a recent CNN article, “Caring for loved ones the ‘new normal’ for boomers.” This article highlights the challenges that former “Good Morning America” host, Joan Lunden, faced when helping her mother transition into a long-term care (LTC) housing facility. Even with all the resources at her fingertips, it took three LTC housing moves before Ms. Lunden found the one best-suited for her 88-year-old mother.
My article, “Selecting a Senior housing community – easy for some, not for the rest of us,” addresses the challenges inherent with even beginning ones search for senior housing. Just like everything that is new to our experience, there are an entirely new set of vocabulary terms associated with long-term care housing so it helps to understand those terms prior to starting off on your journey.
Additionally, the article “Avoiding the pitfalls of selecting senior housing” addresses the ways in which you can discern whether or not the housing community you’re considering has had any run-ins with licensing, the Department of Social Services, and the like. You will be pleased to know how easy it is to check up on the facilities you’re considering just by making a few phonecalls or perusing websites that provide vital information to consumers about incidents that might have been investigated at the facilities. No one needs to go into this task blindfolded and uninformed. The better informed you are, the better the chance of success in choosing the most appropriate senior residential situation for you or your loved one.
What has been your experience as someone looking for long-term care housing options? Certainly all of us can benefit from the experiences of others just like yourself so I hope to hear from you in the form of blog comments soon!
Where do you find peace?
Do you find peace within the circle of your family; or does meditation or prayer, an inspirational book, or music fill your soul? Wherever the source – how do you keep that peace from slipping away?
Certainly when we’re exposed to sorrowful or earth-shattering news, any semblance of peace and calm seem to disappear, such as: acts of terrorism – both domestic and abroad; heartless school shootings; bigotry and hatred; and even devastating illness. How many times has your armor been pierced by such circumstances?
Too many to count. So how do we find peace amongst the chaos?
We can find peace in many small ways – probably the easiest way to do so is to acknowledge the beauty that surrounds us. It doesn’t matter whether you’re a creationist or an evolutionist, the beauty you see is the same. It’s always refreshing when I walk through my local plant nursery, Molbaks, to see the intricacies of flowers and their natural, yet seemingly unrealistic, colors. How did that happen? How can so much detail just happen and we had nothing to do with it? I relish the peace I feel when roaming the rows and rows of flowers and I capture that moment and take it home with me.
And the colors of sunrises and sunsets – what a joy to behold! Even though my house is located in such a way as to not be able to directly see the sun’s rising and setting, I still have the privilege of seeing its aftereffects in the pink and ruby colors of the sky. My mother’s favorite color was pink, so when the sky is beautifully colored in that tint, I credit my mother for this natural artwork, somehow executed from her heavenly resting place.
Celebrating even the smallest of victories in one’s life. Time and again I remind myself to acknowledge the small goodnesses and victories in my life. I learned this practice shortly after having a fairly major orthopedic surgery several years ago. The recovery and rehabilitation were lengthy so I had to take comfort in even the smallest signs of improvement so that discouragement didn’t creep in to rob me of the positive steps I had made towards recovery.
So too is it important to pay attention to all the emotional windfalls that come our way. A huge lottery windfall – such as recently happened (December 2013) in California and Georgia – isn’t the type of emotional windfall I’m talking about. We can experience far more authentic emotions that are not tied to money or things. Someone greets me with a smile or has a word of encouragement that I absolutely needed at that moment? That feeds my soul. I greet someone else with a smile and a hug? Even better – now I’m paying it forward! It’s been said many times before that the richest and longest lasting gifts are those that don’t cost a cent. As trite as it may sound, it’s still absolutely true.
Where or how does one find peace when hit with a wall of hurt – whatever that hurt may look like? In my experience, I have to force myself to look away from the hurt/pain/stress/negativity in order to clearly see some peaceful element, regardless of how small, that will convince me that all is not lost, because I still have this, whatever “this” may be. When we consciously turn away from the wall of hurt, we then have the ability to find some element of peace, somewhere, in our purview. That doesn’t mean that we ignore what is required to resolve the hurt that came our way, but we make a conscious decision to redirect our focus elsewhere so that all the focus isn’t on the hurtful things that have come our way.
Dona Nobis Pacem. I really like this blog entry entitled, Dona Nobis Pacem, from a blog written by Kathy that focuses on her quest to find peace after the death of her mom to pancreatic cancer. To be sure – finding peace is a journey, it’s not just a decision one makes – and Kathy’s article addresses the work required to attain peace. But initially she had to make a decision to simply start on that peace-finding journey, and doing so, she’s nearing her quest. I hope you will visit Kathy’s site and take the time to also watch the video she attached that highlights the song Dona Nobis Pacem – Give Us Peace.
Where do you seek happiness?
I came across a quote the other day from Marie Mountain Clark, one of an elite group of women who completed U.S. Air Force pilot training in the 1930’s. Ms. Clark died in 2008 at the age of 93.
“It is natural for a person to seek happiness in life; however, I believe that this desirable aim is never achieved if one attempts to find it directly. Instead, happiness is found indirectly as a by-product from devoted service to the lives of others.”
Thank you, Marie, for words by which to live.
Whether you’re in your 20’s, 50’s, or 80’s, life is too short. We absolutely have no guarantee of the next minute, month, or year. Why occupy what time we have, regardless of how long it might end up being, with tasks that provide no assistive value to others? Does this mean that we all quit our jobs and start a life that rivals Mother Teresa of Calcutta? Not by any means. What it does mean, however, is that in the hours that we’ve been given, let’s make as many of those count. A very wise man once said, “Do all that you can, in all the places you can, in all the ways that you can, at all the times you can, to all the people you can, for as long as you can.” – John Wesley
Define your passion; follow your heart; and make a difference in someone’s life. If your eyes and ears are open, you’ll know what that is.
Creating the next chapter of your life.
Do you seek new direction in your life?
Are you in the process of recreating yourself?
Well I’ve learned that it’s easier to know which direction you should go if you’re already in motion.
The world may have been created in a week, or zillions of weeks; either way, a lot of energy went into that creation and the world-in-process was not a stagnant one.
Trial and error. I constantly look for ways to improve myself and increase my effect upon the community around me. If I’m not contributing to a cause – regardless of how big or small – I figure, “Why bother?” But if I wait around for some sort of change to occur, I’m going about it in the wrong way and believe me, I’ve experienced enough trial and error to write a book on the subject. The trial and error approach works, however, if a person becomes well-informed and doesn’t take financial or personal risks that they can’t afford. After all, sometimes we need to discover what doesn’t work for us in order to find out what does work for us.
Living or playing to your strengths. My Baby Boomer direction was greatly influenced by Marcus Buckingham, one of the world’s authorities on employee productivity. (By the way, his DVD series Trombone Player Wanted, is worth looking into.) He suggests that to make your greatest contribution, it’s best to play to your strengths most of the time. I have taken to heart Mr. Buckingham’s strong caution against veering off ones strengths path. After all, when I’m creating a new me, why would I choose to do the lame-o, same-o with all its inherent dissatisfaction? That’s like doing the same thing over and over again and expecting different results. That sure hasn’t worked for me. In addition to playing to my strengths, I also play to my passions. As a Baby Boomer creating my life’s next chapter, it makes sense to deliberately avoid activities that drag me down and weaken me and run to those activities for which I am most impassioned and inspired.
Find your niche and go for it. I know what I like to do and what I’m good at so I try to consciously remain open to opportunities that directly relate to those strengths. I thoroughly enjoy working with an older population of adults but I know what part of that experience I’m able to do, and what I’m not able to do. For example, I know my limits on “clinical atmosphere” so any involvement with older adults excludes my participation in a nursing home or hospital environment. But throw me in the midst of adults living in assisted living or dementia residential settings and I will make new friends of everyone with whom I come in contact. Add to that my enjoyment and effectiveness as a public speaker, I look for every opportunity in which to use those abilities. As a Certified Long-Term Care (LTC) Ombudsman, I have the privilege of meeting with and advocating for residents in LTC settings. Additionally, I provide resident rights presentations at those facilities and at non-facility venues such as senior centers and city forums. It’s the best of both worlds for me – interaction with my target audience and feeding my passion for public speaking.
Recognizing an open door when you see one. On a recent Oprah’s Next Chapter episode, Oprah Winfrey interviewed Lady Gaga and at one point asked the singer how she came up with new song or album ideas. This is the gist of what Lady Gaga said: she imagines herself in a hallway, there are doors all along the hallway but she knows there’s another door coming up further down the hallway that is more appropriate but it’s not readily visible. Through trial and error she eventually finds the correct door/song inspiration. How does she know that’s the door through which she is to walk? When the door finally opens, the light floods in, she is able to block out all distracting noises, and her wishes and thoughts rise to the surface as a basis for her next song/album creation. I’ve opened some wrong doors in my life as a result of incorrectly thinking that just because a door opens, that means I’m supposed to walk through it. Again, trial and error comes into play and discernment takes a front row seat.
Not every door that opens is going to be the correct one. When I’m in exploratory mode, I have to be very careful not to walk through the first door of opportunity that comes my way – regardless of how enticing. When I make this mistake, I quickly discover that I’ve committed myself to the wrong project and have had to withdraw myself shortly thereafter. I didn’t look before I leaped – not a safe, or advisable practice to be sure. It’s worth me taking the time to weigh my options; write a list of Pros and Cons; ask trusted individuals for their input; and then make an informed decision. If it’s right for me, it’ll wait for me. If this new opportunity allows me to play to my strengths and my passions, everyone benefits and there are few, if any, casualties along the way.
What does the next chapter of your life look like? How are you going about writing that chapter? I’d love to hear from you because I’m pretty sure I have quite a few more chapters of my own to write.
Start your retirement – start your job as a family caregiver.
You’ve worked your entire life; you’ve lined up your retirement leisure activities; you’re ready to start the first day of the rest of your life, but instead you start a new job: caregiver to your sibling, spouse, parent, or other family member.
Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver. It doesn’t work or it only works until the caregiver runs out of steam. One way or another, your retirement years sure don’t resemble what you envisioned.
The CNN article, As baby boomers retire, a focus on caregivers, paints a frightening picture but one that is painfully accurate. The highlighted caregiver, Felicia Hudson, said she takes comfort in the following sentiment:
Circumstances do not cause anger, nervousness, worry or depression; it is how we handle situations that allow these adverse moods.
I agree with the above sentiment to a very small degree because let’s face it, the nitty-gritty of a caregiver’s life is filled with anger-inducing depressive circumstances about which I don’t think caregivers should beat themselves up trying to handle with a happy face and a positive attitude. It just doesn’t work that well in the long-term. It’s a well-known fact, and one that is always talked about by the Alzheimer’s Association, that caregivers don’t take care of themselves because they don’t know how, or don’t have the support, to stop trying to do all of their life’s jobs by themselves.
“I’m obligated because my parents took great care of me, and now it’s time for me to take care of them.”
or
“For better or worse means taking care of my spouse, even though she’s getting the better of me, and I’m getting worse and worse.”
The problem with the above sentiments is that oftentimes the adult child or spouse start to resent the person for whom they are providing care. It’s like going to a job you hate but being held to an unbreakable employment contract; your employer is a loved one with a life-altering or terminal illness; and you’re not getting paid. “Taking care of a loved one in need is reward enough.” No, it’s not.
I’m not bitter, I’m simply realistic. Caregiving is one of the most difficult jobs any of us will hold and we can’t do it all by ourselves. My blog article, Caregiving: The Ultimate Team Sport, encourages each person in a family caregiving situation to create a team of co-caregivers to more effectively get the job done. And please take a look at the other articles found in that same category of Caregiving. I hope you will find encouragement in those articles – some based on my own experience, and some from other caregivers’ shared experiences – especially when a positive attitude and a happy face just isn’t working for you.
The Contentious Alzheimers Patient: You Can Be Right or You Can Have Peace
The Contentious Alzheimers Patient: You Can Be Right or You Can Have Peace.
This article from The Alzheimer’s Reading Room provides much wisdom and guidance when it comes to making choices when communicating with someone with Alzheimer’s or other dementia. As I’ve mentioned in earlier articles on my Blog, “If you don’t insist, they can’t resist.”
Caregivers: learning from our mistakes.
“Once bitten, twice shy.” The Chinese and Japanese proverb has a variant: “One year bitten by a snake, for three years afraid of a grass rope.”
How does one who is as imperfect as myself apply this Proverb without writing an article that goes on and on into perpetuity? All of us can think of circumstances in which we fail to learn by experience and continue doing the same stupid/inadvisable thing over and over again expecting different results. As I said, my life is rife with examples, but this article centers around caregiving – especially as it applies to caring for someone with Alzheimer’s or other dementia. CAVEAT: I would never write on something about which I had not experienced. I’ve been there. I’ve done that. I’ve paid for my mistakes.
I’m so tired of my spouse/father/mother asking me the same question over and over again and supplying her with the same answer over and over again!
Anyone with a loved one who has any type of dementia has lived in this unending vicious cycle. We think that if we just answer the question one more time she’ll remember and not ask the question again. Or we think that if we just spoke louder – or slower – she would certainly remember and life would be infinitely improved. Not happening. Answer the question once, and then move on to another topic. Change the subject; redirect your loved one by doing something that will distract her; or simply don’t respond at all. What ever you do, don’t aggravate the situation by reminding her that you’ve already answered that question numerous times so why don’t you stop already!!!??? Take a deep breath and remember: your spouse isn’t the one asking questions over and over again and frustrating you beyond all measure – the disease is asking the questions. I know – intellectually you understand that concept, but your eyes see and hear your spouse pestering you for an answer over, and over again, so it’s very difficult to get beyond the emotion of the situation. Read the rest of this entry »
Long Term Care Insurance scares me.
insurance, n. A thing providing protection against a possible eventuality. Concise Oxford English Dictionary, 11th Edition; 2004.
Auto insurance, home or renters insurance, and health insurance – we understand these policies and know that more likely than not the need for the aforementioned insurance policies will rear its ugly head in the near or distant future so we pay the premium for said policies, hoping we won’t need it, but sleeping better at night because we have it.
Why is purchasing long-term care insurance such a difficult step to take for me and my husband?
- Unquestionably, it’s expensive;
- Fearfully, companies who offer this product are going out of business left and right and may leave us holding an empty bag;
- Definitely, it’s a real difficult type of policy to understand; but
- Undeniably, the financial need for it can outweigh the cost of purchasing it.
My husband and I have still not made an effort to look into it further. Here are my two reasons based on family experience – both of which tend to contradict each other:
My father’s long-term care insurance policy. My father had a long-term care insurance policy for which he paid premiums for at least 20 years – no small amount of money to be sure. He was diagnosed with Alzheimer’s at the age of 84 and died five years later. His care needs at the retirement facility in which he had lived for 13 years didn’t meet the insurance reimbursement threshold until his final month of life. As with most policies, the insurance holder’s care needs must meet a defined level of care before the insurance company kicks in their assisted living care reimbursement payments. When that happens, the insurance holder no longer pays any more premiums. Twenty years of paying premiums for one month of reimbursement benefit.
My sister-in-law’s long-term care policy. My brother and sister-in-law purchased their long-term care insurance policies when they were in their late fifties. Less than a year later my sister-in-law was diagnosed with early-onset dementia and approximately two years later drew benefits from her policy. A couple of years of paying premiums for what will be years of reimbursement benefit. If that isn’t the good news/bad news of long-term care insurance I don’t know what is!
I have no excuse. I know the devastating costs of long-term care because in my past professional life I worked for a senior housing provider and they represented the Champagne & Chandelier variety of assisted living. But even the generic assisted living providers charge high rental rates and as ones’ care needs increase, so do the care fees. This isn’t avoidance behavior on my part and I’m not squeamish about the subject of health and ones’ eventual death. I’m just finding it hard to take this leap into signing up for insurance, even though it holds the assurance of fending off the potential of total personal financial collapse without it.
How are you Baby Boomers dealing with this subject? If you finally bit the bullet and purchased a policy – how did you finally take that leap of faith?
I AM NOT LOOKING TO BE BOMBARDED BY SELLERS OF INSURANCE AS A RESULT OF THIS BLOG ARTICLE SO PLEASE DON’T GO THERE. But I welcome other constructive feedback for those of us on the brink of making this difficult decision.
Five Sources of Hope for the Deeply Forgetful, Dementia in the 21st Century
Five Sources of Hope for the Deeply Forgetful, Dementia in the 21st Century.
I’ve found the Alzheimer’s Reading Room to be very helpful in my efforts to continually improve my understanding of Alzheimer’s and other dementia. The good news? Subscribing to the Reading Room is free! I hope all benefit from this attached article about dementia in the 21st century.
Common Caregiver Challenges
The words Caregiver and Challenge go hand-in-hand. Here’s an article to shed some light on a caregiver’s predicament.
Examining our gratitude levels
By the time you read this article, I hope you’ve already read the reblogged article I posted entitled “Up Your Gratitude,” published in a Parade Magazine article earlier this year. That article was part of the inspiration for this article and can be found in this same Blog category.
I recently watched an Oprah Network special wherein Oprah visits families of Hasidic Jews. One of the families had NEVER seen a television show in their lives and didn’t even know who Oprah was until her staff approached the family about this project of interviewing a Hasidic Jewish family. This family consisted of the husband and wife and 9 children, the oldest of which was 17 years old and the youngest, 18 months. If you can believe what the 17 year old son said – and I think I do – he has absolutely never watched TV and is an extremely happy teenager. The couple’s 15 year old daughter loves not having the normal pressures associated with young teen girls. “There’s no pressure” she explained.
None of the children had ever heard of the names that Oprah tossed into their conversation: from cartoon characters such as Micky Mouse and Sponge Bob Squarepants, to Beyonce and other well-known entertainers. Nope, they had no idea what or who she was talking about. Considering they had never heard of Oprah, that’s not at all surprising.
And yet they were extremely happy and grateful people.
THIS ARTICLE IS NOT ABOUT RELIGION – it’s about the lack of wanting more,wanting better, and wanting bigger as it relates to consumerism. Each person Oprah interviewed talked about the lack of pressure in their life to want, want, and want even more. As a matter of fact, the wife in this family of 9 children, who is pregnant with her 10th child, said the only time she had a feeling of wanting more was when she was able to upgrade to a better wig when her earnings increased. (At a certain age, Hasidic women must cover their hair as a gesture of modesty, be it a scarf or a wig.) So when this woman was able to get a better wig she experienced an “Aha” moment – getting a better, more natural looking wig satisfied a want for something more that she hadn’t ever experienced. Gratitude abounded in this household that most definitely doesn’t resemble our idea of a “normal” frantic-ridden, electronic guided, household.
Time to check my own gratitude level – and level of personal satisfaction. When you receive not-so-good service at an establishment, do you trash its character to others so that they are aware of the establishment’s failings and will curtail their support of its business? It’s easy to complain about something isn’t it? It’s harder – but better – to compliment someone who does a great job:
- Writing a note to the manager of a salon you frequent, complimenting the stylist who always does such a great job on your haircut and/or color. It’s not enough that you tell the stylist how satisfied you are. Tell the one who signs his paychecks and sets his schedule – that’s where the thank you also needs to go so that your favorite stylist receives something for his/her efforts.
- Going out of your way to thank someone in person, or by thank you note, for their volunteerism at church or other community venue;
- Calling or writing a note, not texting, not e-mailing, when you’re grateful for something you received as a gift;
- When your coworker does a great job, or your child does something in the home without being asked, or when you are simply grateful for the commitment your spouse has to his or her job that assures constant financial support in the home – acknowledge their efforts instead of simply appreciating them in your own mind.
Who benefits from appreciative thoughts if they are not expressed to the person who inspired them? Gratitude expressed provides more benefit than you can imagine. Don’t you want to start a ripple effect of gratitude in your small corner of the universe? Get that ripple going – you’ll be better off as a result, and everyone to whom that ripple touches will benefit as well.
Up Your Gratitude: ThankYou Notes Can Have Profound Effects | Parade.com
Up Your Gratitude: ThankYou Notes Can Have Profound Effects | Parade.com.
The attached article, published on January 1, 2012 in the Sunday newspaper’s Parade Magazine section, had a great impact on me; so much so that I wrote my own blog article today, about the effects of gratitude on one’s life. I hope you enjoy both articles.
10 Government Programs You Can Access for Your Elderly Parents
10 Government Programs You Can Access for Your Elderly Parents.
This VERY comprehensive article is designed for a person’s elderly parents but guess what…us Baby Boomers need to be aware of these resources as well so I want to pass this article along to you! It helped me – I hope it’s a great resource for you as well.
Alzheimer’s and other dementia: Advance Directives
Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.
My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved. My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died. Think of an Advanced Directive or Living Will as a gift to your loved ones. It certainly was a gift to my siblings and me.
An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia. This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness. This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness. Bravo Washington State!!!
Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives. The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.
What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?
Potential issues that might be addressed are preferences regarding:
- care in and outside of the home;
- financing of said care;
- caregiver choices;
- involuntary commitment;
- consent to participation in drug trials;
- suspension of driving privileges; and
- any future intimate relationships.
To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816. At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia. Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver.
That’s a priceless gift to be sure.
The Best Alzheimers Caregiver Tool of Them All, Harvey
The Best Alzheimers Caregiver Tool of Them All, Harvey
There is no such thing as easy caregiving – anyone who has been, or is currently, a caregiver for a loved one with Alzheimer’s or other dementia can attest to that fact. The good news, however, is that every once and awhile we’re fortunate enough to be exposed to glorious snippits of wonderfulness that help us through the day. Here’s hoping that this link does just that for you.
Financial fraud against the elderly: it’s a family affair.
A trusted family member would NEVER financially exploit their loved one – right?
WRONG.
All classes of people, and most age groups, become victims of financial fraud. The elderly, however, have been hit particularly hard. A recent Puget Sound Business Journal article (a Washington State publication) provides some astounding statistics for the state of Washington:
- reports of elder abuse grew by 30% in five years;
- 4,121 cases were reported to Adult Protective Services in all of 2010 and that number was already reached by November of 2011;
- the Washington State Office of the Attorney General only receives a fraction of the financial abuse cases because many go unreported; and
- the National Center of Elder Abuse in Washington, D.C. states that only one in 25 cases of elder abuse are ever reported.
So who are the perpetrators? These thieves are neighbors, caregivers (family related or not), best friends, and trusted financial professionals.
But nationally, nine out of 10 financial exploitation cases involve family members.
This type of abuse begins innocently enough “let me help you pay your monthly bills mother.” The adult child becomes a signatory on the bank accounts, keeps up with mom’s bills, but also pays him or herself a little here and there and before you know it, mom doesn’t have the financial means to live out her days. Certainly most family members are trustworthy and respectful of their elders and look out for their elders’ best interests but the statistics certainly paint a horrific picture, don’t they? And what’s worse, if the elderly victim has Alzheimer’s or other dementia, it doesn’t take much effort for anyone – family or stranger – to enrich their own bank account while draining mom and dad’s.
It’s virtually impossible for government agencies to monitor cases of elder abuse. The local agencies that help the indigent elderly are strapped financially. Budgets are being cut resulting in decreased staffing, and caseloads that are unmanageable and overlooked – but not for lack of trying!
So what can you do to protect those vulnerable adult victims that seemingly go unnoticed in our local communities? I provide some suggestions in my blog article, Elder Fraud: a few things you can do to protect your loved one. This article assumes that family members are trustworthy and selfless in their interests. Fortunately, that’s probably you, but obviously, elder fraud is a national problem so it’s vital that everyone be reminded of how easily thieves can take advantage of the older generation.
I’m certain this topic affects many of you and at the very least, angers the rest of you. I covet your input and look forward to your thoughts on this matter.
Voices of the bored retirees.
- “I’m trying to decide what to do with the rest of my life.”
- “I’m a frustrated fish out of water since retiring two years ago.”
- “I’m desperate to find something to fill my time!”
- Woman in her 80’s: “What am I supposed to do with the rest of my life? I feel helpless and hopeless without worthwhile connections.”
I attended a class four and a half years ago comprised of people in their 50’s through their 80’s. This class was designed to make our Senior years count. I just now stumbled on notes that I took in that class wherein each class member was asked to make a comment about their current state in life. The above four comments are just some of those statements.
Desperation and sadness all around me. I recall now that the mood of this class was one of desperation and sadness as those who yearned for retirement their whole working life found themselves frantically trying to fill their days. Their feelings were summed up in these words:
- depressed
- lack of purpose
- short-sightedness
- emptiness
- loss of self
Gerontologist, S. Barkin puts it this way regarding our responsibility to be actively walking through our senior years, and I paraphrase,
What do we want to do for the time remaining in our life? We all should be mining our experiences and the wisdom therein to help with our present and future paths.
As I mentioned in my article, Retirement planning: it’s not what you think, all of us have a history of life skills that should not be put up on a shelf and never used again. Instead we should be retooling those skills into something that is meaningful and enjoyable to us and beneficial to others. The students in my class had many thoughts – mostly unfocused and therefore not very productive – but those thoughts had yet to turn into action.
The first step is to decide what is significant to you and act on it.
Aging well starts with the mind but it’s in the doing that makes it count. We all have a choice when we find ourselves at a loss of purpose: we can stay stuck, or we can actively make a difference in the local community around us. Baby Boomers are the first generation of peoples to have such a long life span. We’re living longer so we have more time to pass our knowledge down to others and use our skills in a valuable way. As the sports company Nike says in one of their ad campaigns: JUST DO IT!
Greetings Baby Boomers! What’s on your mind?
I love to write; I love to talk; but I also really, really, love to listen.
I placed this Blog entry in the Personal Struggles category of my Blog because I’m struggling to assure that what I’m providing on this Blog meets your needs and interests.
Sure, my ego would be stoked by having more Followers and more page hits – and I welcome all that have an interest – but that’s not my biggest concern. What’s missing for me is reader input in the form of Comments. A lack of comments is not the readers’ fault, rather, I think I’m missing the boat regarding the nature of my Blog entries because they don’t encourage Comments.
Are my articles too long? Are they not sufficiently pertinent to your ongoing interests? Is the subject matter too limited in scope? If so, in what direction would you like me to go? I’ll go just about anywhere with my Baby Boomer Content because I’m not an expert on a zillion topics but I am interested in at least that many.
If you have the time, I’d love to hear from you. And I can pretty much promise that I won’t be offended by any constructive criticism you provide. Society is like a bird. It has two wings, and a bird can not fly when one of its wings is broken. My wing isn’t broken, it just needs to be pointed in the right direction. I hope you’re willing to help me do so. I love what I do and cherish this venue where I can hone my skills and increase my knowledge because along with listening comes the benefit of learning something new. I can hardly wait to hear from you.
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Living: the ultimate team sport 