My local newspaper ran an investigative report about the Adult Family Home (AFH) industry in Washington State. Depending upon where you live, a similar assisted living home may be called a Group Home.
In Washington State, no more than 6 residents can live in an Adult Family Home. These “businesses” popped up all over Washington State over the past several years as entrepreneurs realized how much money they could make taking in residents and charging thousands for rent and resident care. At this writing, there are close to 2,900 AFHs in the state. Since 2010, 446 of those were cited for violations of health or safety standards. Caveat: there are many Adult Family Homes that are doing an extraordinary job, but it’s the bad ones that make the Headlines and that’s the way it should be.
June is Elder Abuse Awareness Month. I thought it appropriate to provide Michael Berens’ series, “Seniors for Sale” in six parts this week, but I provide it with a warning that this Pulitzer Prize winning expose can be very difficult to read, and watch. Nevertheless, awareness is key, so I hope all will benefit from his extensive work on this piece. Whether you live in the United States, Singapore, the United Kingdom, or elsewhere globally, abuse occurs world-wide and it’s the vulnerable adults in this world who are its targets.
Seniors for Sale – I provide this link to Part 1 of the series – “Ann.”
I know that all of us want to see an end to Alzheimer’s disease. Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.
Rarely has there been an opportunity to provide input in such an international forum. This survey can be completed around the world. It is not just intended for one country. The primary topic of the attached survey revolves around the stigma attached to dementia. You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous. You will not be asked to provide your name, nor a physical address, nor your e-mail address.
I hope you’ll consider filling out the online survey. It was VERY quick, so you need not spend a lot of time on the survey.
The results of this survey will appear on the Alzheimer’s Reading Room website on World Alzheimer’s Day – Sept. 21, 2012.
In an earlier article, “Retirement planning – its not what you think,” I talked about the planning required to have a quality of life after retiring from one’s job that relies on spending your time in a way that pleases you, and benefits others.
My closest friend, Sophia (not her real name), is in her 80th year of life and for the seven years that I’ve known her, Sophia has struggled with boredom, but not just boredom per se. Sophia wants to matter; she wants to make a difference; she wants to contribute to the world around her. In a recent e-mail to me, Sophia said:
“There are too many active Seniors roaming around the coffee shops and Malls wondering what to do next. Even my friend Walter, at age 97, felt a sense of accomplishment yesterday when he washed all the bed linens and remade the queen bed – this done using his walker, back and forth.”
Sophia epitomizes the bored retiree that I discuss in my article, “Voices of the bored retirees.” We often think that when we retire we’ll be satisfied with being able to golf whenever we want; sleep in as long as we want; work in the garden whenever we like, and read all the books we’ve stacked up, but not had the time, to read. My father was one of those retirees who longed for the opportunity to be on the golf course as often as he wanted. A month post-retirement, he was bored with it all.
Another quote from my friend Sophia: “I really believe that much that we call Alzheimer’s is just a simple lack of interest in remembering what no longer matters. There is definitely a veiled space that occurs now and then when it is either too painful to remember, or not worth it to try. This, in addition to physical pain and boredom, can reach a kind of black hole.”
I know my friend very well, so I know that she doesn’t support that type of Alzheimer’s reasoning, but what she said really resonated with me. Too often we focus too much on what doesn’t matter, and far too little on what can matter greatly in our remaining years. Gerontologist S. Barkin believes that we have a responsibility to actively walk through our retirement (or Baby Boomer) years:
“What do we want to do for the remaining time in our life? We all should be mining our experiences and the wisdom therein to help with our present, and our future paths.”
Most of us, even when we’re enjoying the relaxation we so richly deserve in our retirement, truly strive to create a new purpose for our life. We want a reason to get up in the morning. We strive to contribute to the community around us.
Does the retirement age need to be raised in order for that to occur? Or can we be just as effective, and less bored, by cultivating a lasting purpose after we’ve entered the long sought-after retirement phase of our lives?
O.K. BABY BOOMERS OUT THERE:
- What’s your plan?
- What’s working – or not working – for you?
- What’s your cure for boredom?
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.
This article is a delight to read. It describes one family member’s perception of having been “chosen” to be the caregiver for his grandmother. As a result of that choice, he developed a product that can be, and is, used widely in assisted living and dementia care units. What a terrific outcome for everyone!
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.
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.