Family issues
Long-term care facility heartache.
More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress. “My kids said they’re not comfortable with me living on my own anymore. Well I’m not comfortable living in this old folks home!”
Sound familiar? It should. I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions. Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.
And I agree with them.
Losing control and losing independence – a natural outcome of getting older? Gosh, I hope not. For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please! Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.
In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living. Think about it! Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation. Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward. And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.
How can the adjustment period be made easier?
As advocates for residents in long-term care living situations, LTC Ombudsmen emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.” What a novel idea! Some of the choices that we know are important to residents are:
- Choosing the clothes they want to wear.
- Choosing what time they want to go to a meal. Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
- Choosing which activities – if any – in which the resident wants to participate. No one should be forced to go somewhere against their will – that’s called coercion. “Come on sweetie, you’ll like it once you get there.” No!
- If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment. When she was living in her own home, she had that right – nothing’s changed – only her environment.
- The resident can even choose to move out of the long-term care facility if she chooses. Don’t forget, it wasn’t her decision to move there anyway. Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.
The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them. Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.
Put yourself in your parent’s or grandparent’s shoes. How would you feel if your opinions, wishes, and rights were dismissed? Feels lousy, doesn’t it?
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.
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!
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.
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!
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.
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.
Elder Abuse Checklist
All of us need to be aware of the varying signs of elder abuse- financial or otherwise. I hope this article from another Blog proves helpful to one and all.
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.
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.
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.
Honesty is NOT always the best policy.
Bear with me – don’t judge me quite yet.
If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies? Do you stretch the truth a bit in order to keep the peace? Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life? Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.
How do you jump over the hurdles of negotiating with a loved one for whom you provide care? Here are a few examples that come to mind.
Scenario one: the need to get creative in order to leave the house for personal business. For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours. Then make sure you’re back on time! If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed. Knowing that you’re going to a support group only confirms how miserable she’s made your life. Read the rest of this entry »
Life can turn on a dime.
If ever there is an example of how life can turn on a dime, it’s Congresswoman Gabrielle Giffords’ tragic experience. January 8, 2012 marks one year since Ms. Giffords was shot in the head while meeting with her constituents in Tucson, Arizona.
The bullet traveled 1000 feet per second into her brain and not only did she survive, even her neurosurgeons termed her recovery a miracle. Is Ms. Giffords back to 100%? No. Will she be? There is a strong hope that she will. As her husband said to Diane Sawyer when asked if he’s holding out too much hope: “You can’t have too much hope! That’s not practical!” In her ABC special on 20/20 chronicling Congressman Giffords’ and her husband, Astronaut Mark Kelly’s journey, Diane Sawyer characterized their endeavors in this manner:
The courage & love you bring when the life you live, is not the life you planned.
Life turns on a dime in many ways: in relationships; in difficult financial times; and in sickness and in health, to name just a few.
Some of you reading this Blog are in the midst of a life trauma that you certainly didn’t plan, and from which you wish you were released. What challenge do you face? Did you see it coming?
One story of life’s changes. I volunteer as a Facilitator for an Alzheimer’s Association caregiver support group. Every member of our group has a loved one with some sort of dementia diagnosis. Some are in the early stages, some are in the middle stages, and three in particular recently experienced the end stage.
RRRING! A telephone rings in the middle of the night and life changes for caregivers gearing up for the Holidays with their family.
In the wink of an eye, life as they knew it took a sharp turn. It’s the Holiday season and suddenly one set of caregivers hires in-home hospice care for their parent and another caregiver rides in an ambulance with her spouse to a local hospice center because of a terminal change in health. Within days both sets of caregivers arrange memorial services for which they hadn’t planned at this stage of their loved one’s life.
BANG! Six lives are lost, and Gabrielle Giffords’ and Mark Kelly’s lives change forever.
Congresswoman Giffords loved spending time with her constituents. The night before she was shot, she took a long bike ride with a friend and was eager for the next day to begin. A week later she and her husband were to undergo in vitro fertilization so they could start planning the birth of their first child together. And those attending this gathering, both staff and general citizenry, hoped for a successful and enjoyable experience. The bottom line is that you can’t plan for what you can’t see coming.
Oftentimes when we hear of tragedies such as those mentioned above, we naively say to ourselves, “Those are the types of things that happen to other people; not us.” Well, the truth of the matter is, those types of things happen to people, and that’s us.
Congresswoman Giffords’ neurosurgeons stated that they don’t know where in the brain one finds charm, optimism, humor or charisma. Certainly no where in the brain can one find sufficient prescience that allows us to see what’s coming around the corner.
No matter how hard we try; no matter how careful we are; life turns on a dime. And sometimes, the life we live becomes the life we did not plan.
I received inspiration for this article from the caregiver heroes with whom I am acquainted, and from Gabrielle Giffords and Mark Kelly in their book: Gabby: A Story of Courage and Hope.
Negotiating to Yes
I really appreciate this article by Lark Elizabeth Kirkwood because teamwork is a theme/process that is applicable to so many areas of our lives. Employed in a small or large company? Applicable. Volunteer for non-profits? Applicable. Family members trying to play on their strengths in a caregiving situation? Applicable.
Thank you Lark for showing us that teamwork isn’t just for sports teams any more.
Optimism amongst the chaos.
In the book, Gabby, by Gabrielle Giffords and Mark Kelly, Congresswoman Giffords’ husband, Mark, provides statements about optimism that have greatly encouraged me. Here are just a few:
- “I saw how optimism is a form of therapy and hope is a form of love.”
- “Doctors at TIRR, the rehab hospital, told us that our optimism and encouragement could make a great difference in Gabby’s recovery…”
- “To be of help to a brain-injury patient, we were told, families need to find a way to balance pragmatism and optimism.”
In a Time Magazine article published December 13, 2011, Congresswoman Giffords addresses the struggles she and her husband have endured as they continue to adjust to the “new normal” brought about as a result of a bullet that pierced her brain on January 8, 2011 when she was reaching out to her Congressional district in Arizona. So many of us have new normals as we walk, or fall, head first into Baby Boomerism. This normal may involve a loved one who has a fatal or debilitating illness. This new normal may be characterized as our own bodily/physical struggles inherent with our age. Each of us have some sort of chronic something-or-other that inhibits our ability to function at 100%.
What is the chronic something-or-other that inhibits your ability to function at 100%?
The above question is a rhetorical one. Neither myself nor the public need to know the specifics – but you know the specifics and you’re the one making long-term adjustments as a result.
What processes do you follow to unearth the optimism that exists somewhere in your psyche? How do you overcome your personal challenges so that you end most days victorious, rather than defeated?
For me, it’s acceptance. For me, acceptance doesn’t mean giving in or giving up; rather, acceptance means being o.k. with how things currently are and finding ways to succeed within that new normal. This mentality or attitude is more optimistic than you may think. Again, for me, I decided to allow optimism to nurture the hope that oftentimes is buried deep within me. Things could very well change for the better – which doesn’t have to be defined as being 100% problem-free. Nope. If I garner optimism at the start of each day, I’m making a conscious and aware decision to acknowledge and celebrate even the smallest of victories that might occur in the next 24-hours. If I wait for a humongous, star-spangled mega-victory, I may wait forever. Instead, I attempt to be aware of even the smallest improvements/goodnesses in my day so that my life is filled with many victories to celebrate. The previous sentence says that “I attempt” to garner optimism throughout my day. I don’t always succeed – but I try.
What small victory can you celebrate today?
What works for you? The rest of us would love to celebrate that victory with you.
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Living: the ultimate team sport 