Caregiving
The unpredictability of Alzheimer’s.
The link above is a blog entry by a delightful woman who is taking care of her husband. Being a caregiver of someone with Alzheimer’s or other dementia is challenging in so many ways but this blogger truly knows how to find the silver lining in her experience as a spousal caregiver.
“Curtain #1 beautifully portrays a day’s challenge as an adventure, not unlike the game show Let’s Make a Deal. You never know what will be behind the curtain – a prize, or a zonk – but this wife’s way of looking at each experience is very refreshing. I don’t think I would handle the circumstances nearly as well as she does. I hope she knows that having a bad day, and one with less-than-perfect attitudes, is more than o.k. because we’re only human, after all. Until we reach perfection, we’ll just have to do the best that we can with what we’ve been given.
I think she’s doing just fine.
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.
When Illness makes a Spouse a Stranger
A very moving story in the New York Times, When Illness makes a Spouse a Stranger, provides a moving testament, contained in an article and a video, of the commitment required when a spouse becomes a stranger.
When Michael French was diagnosed with frontotemporal dementia, his wife Ruth was told that the best way to describe this type of dementia is that the brain atrophies. This dementia is not like Alzheimer’s, the most common form of dementia. Frontotemporal dementia strikes younger people and progresses much faster than other dementia.
How does one continue to have a relationship with someone who has become a complete stranger, especially one’s spouse? Ruth says that what is left in their relationship is love – that’s all – and that’s enough for her right now.
This story, and the accompanying video, are very moving and somewhat intense, but very much worth viewing.
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.
Alzheimer\’s Reading Room: \
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!
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.
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!
Retirement communities: the good and the bad.
In the April 2012 issue of the AARP Bulletin, two articles caught my eye. The first article, “To be a Bride Again at 100” (attached is the video link) celebrates the marriage of Dana Jackson, 100 years old, to her groom, 87 year old Bill Stauss. This is a love story between two residents of a nursing home in Bowling Green, Kentucky. This nursing home celebrated their love, and their death-do-us-part vows, in such a lovely way. The management and staff of the nursing home exhibited a wonderful sense of community and support of Dana and Bill. Whether they realized it or not, the staff at the Rosewood Health Care Center helped the newlyweds exercise their rights as long-term care residents.
The second article in the Bulletin’s column, What an Outrage, “Barred from a fine dining restaurant,” shines a spotlight on a Virginia retirement community that not only did not exhibit a sense of community and support, but they quite literally violated the rights of a husband and wife living there. When the husband’s care needs required him to switch to the skilled nursing care portion of the retirement community, while his wife remained in the independent living portion of the community, their meals together were abruptly stopped. The wife could continue to dine in the fine-dining restaurant of the retirement community, but her husband was barred from doing so. He and the other sixteen nursing care and assisted living residents were required to eat in their own separate dining room.
Harbor’s Edge retirement community had a couple non-fatal choking incidents involving three of its nursing care and assisted living residents in 2011 so a new rule was put in place segregating the more inform from the less infirm, even going so far as to ban the more infirm residents from attending events where food was served. Keep in mind, residents in this retirement community make a sizable deposit to live there, to the tune of a half million dollars, PLUS a $5000 monthly fee. I guess money doesn’t buy happiness but it sure should have bought these residents the right to eat where they pleased!
The outcome: the Virginia Department of Health was contacted and soon thereafter, the ban was lifted. In Washington State, laws are in place to protect the residents of long-term care (LTC) facilities so that these residents can experience a dignified quality of life. Vulnerable adult residents are guaranteed specific rights by law. Revised Code of Washington )RCW) 70.129.020 Exercise of Rights, says in a nutshell that a resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility…The resident has a right to be free of interference, coercion, discrimination and reprisal from the facility in exercising his or her rights. The remainder of RCW 70.129 further details all the civil & resident rights afforded vulnerable adults in the State of Washington. If in your experience you suspect that someone’s long-term care resident rights are being violated, please contact the long-term care ombudsman program in your state by visiting the attached weblink for the National Long-Term Care Ombudsman Resource Center.
What great, and not so great, experiences have you had relative to long-term care residential living? I would love to hear from you so we can celebrate the good, and expose the bad, for all of our benefit.
Alzheimers Test, the Alzheimers Questionnaire Alzheimers Reading Room
Alzheimers Test, the Alzheimers Questionnaire Alzheimers Reading Room.
No test for Alzheimer’s disease is fool proof and I would venture to say that ALL tests of this nature aren’t black & white. There are many gray areas when attempting to discern the presence of Alzheimer’s or other dementia in its earlier stages but as is often said, knowledge is power and certainly some information and guidance is better than none. I hope the article linked here will prove helpful to you.
You’re Looking at Me Like I Live Here and I Don’t | Documentary about Alzheimer’s | Independent Lens | PBS
I hope everyone has an opportunity to see this PBS documentary which airs March 29, 2012. What an eye opening foray into the day-to-day life of a person whose own identity escapes them.
Dotty Colors, On Her Own!
This article from the Alzheimer’s Reading Room brings hope and promise surrounding a disease that usually holds nothing but heartache. As an Alzheimer’s caregiver support group facilitator, I have heard a similar story about one of the support group member’s sister who, seemingly lost in her cognitive decline, is able to paint and do so beautifully – “drawing” on her pre-dementia passion for the Arts.
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 »
Making Memory Books for People with Alzheimer’s Disease or Dementia.
Making Memory Books for People with Alzheimer’s Disease or Dementia..
This post, from a wonderful Blog about caregiving, http://www.letstalkaboutfamily.wordpress.com provides an excellent idea. It’s never too late to start this project for a loved one with Alzheimer’s or other dementia.
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.
Sufficient caregiver training: vulnerable adults deserve nothing less.
Local and Federal governments have more red on their accounting ledgers than black. Citizens balk against any raise in taxes, regardless of how infinitesimal the increase. The same citizens demand more services from their government. How does one get what they need without paying for it?
THEY DON’T.
I’m not a politician – and never will be. I’m not a brilliant person nor do I fully understand all the nuances inherent in government bureaucracies. About this one thing, however, I am absolutely certain: many valuable services that were initially set in place for those considered vulnerable in our society are still desperately needed for even a modicum of dignity and quality of life. Did the needs suddenly disappear? NO. Did the vulnerable in our society somehow experience a miracle and are now fully capable of managing their lives on their own? NO. The needs are still there and the vulnerable in our society are being pushed to the wayside and are slipping through the cracks. Do I like paying taxes? NO. I guess I’m wondering how to generate funds for needed programs without “robbing Peter to pay Paul.” Taking from one program and sliding it over to a different program robs other needed services. If ever there was a Catch-22, this is it.
Let’s look at caregiver training. In Washington State, in the year 1996, caregivers were only required to pass First Aid training, CPR and HIV training, the Fundamentals of Caregiving training (22 hours), and had to successfully pass the State’s criminal background check.
In a Seattle Times article printed January 23, 2000, Push on for more caregiver training, the following statement begins the article:
With a first-aid card and some training about CPR and HIV, you can find yourself a challenging new job caring for the elderly and infirm, bathing them, feeding them, and fielding punches from them. For this you can make about $7.50 an hour. At McDonald’s, you can make more slinging burgers and fries. It’s a wonder anyone cares for the elderly and infirm at all.
The year 2000. For the third time in four years, the Washington State’s long-term-care ombudsman (who is independent of any government agency) pushed for more training for caregivers. “The Legislature and the industry both need to step up and say this is an important key profession…People who take care of human beings are important people.” State bill I-1029 passed which would increase the number of required training hours and implement specialty training for residents with special needs such as dementia, mental health, and developmental disabilities. Implementation of this Bill’s provisions was delayed and set to go into effect March 1st, 2002.
Fast forward to February 2002. Let’s look at another Seattle Times article, Caregiver-training issue causes split in state’s long-term-care community. After the Bill from the year 2000 passed, the Department of Social and Health Services didn’t get the training curriculum revised in time for the March 1st, 2002 implementation so the State Legislature delayed the start-up of the new training requirements to September 1, 2002. Private providers of long-term care – those not accepting Medicaid – would have to foot the bill to provide employee training, most certainly passing the costs along to their residents. Long-term care facilities that accept Medicaid payments would rely on the State Medicaid program to provide the mandatory additional training and the State contended that the budget does not exist to provide the mandated training voted into law from initiative I-1029. Time to go back to the drawing board.
Bear with me. Fast forward to November 2008. Let’s look again at another Seattle Times article, Voters back more caregiver training. In 2008 a revised caregiver training Bill was passed requiring a training increase from 34 to 75 hours for new long-term care workers and required caregivers to undergo a Federal criminal background check. This bill passed overwhelmingly. It’s great that the citizens of my fair State decided that anyone taking care of the vulnerable should be held to a high standard. Oops – in the same voting cycle, initiatives that would have imposed taxes on candy, soda pop, and other piecemeal purchases failed big time. These miniscule, microscopic taxes would have saved vital services for the vulnerable and would have helped the State pay for the “mandated” new training. No money – no increased training – no Federal background checks.
One more time. Fast forward to November 2011. Washington voters asked to boost caregiver training again, Seattle Times. The Legislature delayed the implementation of the 2008 Bill because of budget cuts. And during the voting cycle of 2011, a re-worked caregiver training initiative made it to the ballot once again as Initiative I-1163, right in the middle of an ever-increasing budget crisis, and the Washington State voters overwhelming approved it. Implementation of the new training and background check requirements are set to start in 2012. Lawmakers pushed implementation to 2014 but the good news is that the Legislature won’t be able to delay implementation of the new requirements without a two-thirds majority. As of March 1, 2012 – the Washington State legislature has yet to finalize any enactment of the Bill protecting vulnerable adults; those that the voters of my state approved – and voted for – numerous times since the early 1990’s…stay tuned…
WHAT’S HAPPENING IN YOUR STATE?
HOW IS YOUR STATE PROTECTING YOUR VULNERABLE ADULT POPULATION?
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.
Activities for People With Dementia
Activities for People With Dementia.
It’s very difficult to successfully engage someone with Alzheimer’s or other dementia. I hope you benefit from this Blog article by Lauren Watral.
Alzheimers Caregiving, It’s All in the Palm of Your Hand
Alzheimers Caregiving, Its All in the Palm of Your Hand.
No is the biggest, most frequently used word in the Alzheimer’s World Dictionary. This article, reblogged from the Alzheimer’s Reading Room, addresses the difficulties of communicating with a person with dementia. Remember – don’t always take No for an answer.
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.
- ← Previous
- 1
- …
- 8
- 9
- 10
- Next →
Living: the ultimate team sport 