I should have posted this earlier than today, but I hope anyone needing this valuable resource – and it’s FREE today Sunday, August 26th!!!!! – will be able to take advantage of it. I know I will.
Thank you, Kelli, for being generous with this offering.
A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.
Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload. Haven’t arrived at that point yet? Of this potentiality you can be certain – all signs point to that being in your future. Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.
It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia. Let’s re-categorize that statistic: 1,200 caregivers are created every day.
The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population. This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.
“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”
Taking a walk with my wonderful Dad in 2007.
And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.
This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov. But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.
FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face. It may be too little too late, but it’s more than has been available up to this point. My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.
And I apologize ahead of time for what awaits you.
The attached article reflects the sentiments of Bob DeMarco, a son who took care of his mother Dotty for over 8 years during a difficult Alzheimer’s journey. He rarely complained – which is stellar, but not required – and now a few weeks after her death, he’s falling back on the memories and finding joy amidst the grief.
I found the attached article very interesting and promising. Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.
My work path in life always includes those with dementia so I will definitely look into this therapy. But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!
Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine. Statistics on aging are astounding, and scary. “By 2020 some 6.6 million Americans will be age 85 or older.” That’s an increase of 4.3 million from the year 2000. Time to celebrate – right? We’re living longer – and in some cases – thriving in our older age. The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.
The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility. The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.” Nice sentiment – but not always possible.
I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one. Below are links to each of those articles. I hope they prove beneficial to you.
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.
My Dad and I on a picnic, Spring 2005.
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.
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.
Putting together an extended vacation to a tropical paradise? EXHILARATING!
Figuring out how to help mom and dad with their increasing care needs? UNEXPECTED!
(Photo credit: Wikipedia)
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!
Taking a walk with my Dad.
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.
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.
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.
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.
The more a person becomes dependent on others, the more protection he needs. A person with dementia needing the assistance of others is considered a vulnerable adult. He can’t defend himself or speak up for himself. He can’t demand exceptional care, courtesy, and respect. As his advocate – that’s where you come in. When he doesn’t have a voice – you step in to be that voice. Your reward will be great if you succeed in doing so.
Part of what I do in my working life is to advocate for vulnerable adults by doing what I can to promote dignity and quality of life for those I have the privilege to serve. As a family member, or good friend, to an adult with dementia, your task is a monumental one because along with your caregiving role, you must also excel at the task of advocacy. In my blog article, “Be an Advocate for your Loved One” posted on this blog November 14, 2011, I discuss the various ways in which you can advocate for your loved one. This current article is the last article in my “Understanding Alzheimer’s and other dementia” series and it addresses the issue of dignity and privacy.
My dad in the 1960's; a former Marathon runner
As those of us who have, or have had, loved ones with dementia we know without a shadow of doubt, that our loved one’s current condition does not reflect the pre-Alzheimer’s/dementia person. A grandmother who previously never spoke the “F-word” now speaks it as though it were just another word in her vocabulary. A previously modest and distinguished gentleman now routinely removes his clothes in front of others, and/or may be inclined to grope his caregivers or other residents. A former globally recognized businessman, sought after for his abundant knowledge in his field, now needs others to feed him and has lost the ability to string a meaningful sentence together. Our loved one’s new normal is shocking to those of us who are close to the person with dementia, and completely foreign to those who are not.
Keeping people informed about your loved one’s condition.
Those who definitely have an attachment to your loved one: friends, coworkers, close neighbors, and of course family members, will probably appreciate knowing what’s going on with him. It’s important to use discernment when deciding who needs to know – and who doesn’t. And thanks to e-mail and texting, we can update people immediately and thoroughly with no need to pick up the phone. That’s truly a bonus, isn’t it? You’re already stressed and emotionally drained by your situation so having to conduct numerous telephone calls and provide the same update to several people would be prohibitive at best.
But with the ease of e-mail comes the temptation to be too thorough in the e-mail missive. You’ve already discerned who needs to be kept updated; now you need to use judgment on how much you say and how you say it. Does your neighbor really need to know about your husband’s incontinence? How would it benefit your mother’s former coworkers to learn that their former Marketing Executive now drools throughout the day and can no longer feed herself? More to the point – ask yourself this question: How would my spouse/parent/partner/sibling/friend feel if they knew I was providing all the gory details of their dementia progression to those near and dear to them? The answer, I believe, is obvious. If they could, your loved one would say, “Please don’t let everyone know what I’ve been reduced to.” Showing respect for your loved one includes protecting her privacy, and thereby her dignity. And I’ll tell you from experience – those on the receiving end of the information would rather you be brief and not overly descriptive.
Celebrate the uniqueness of your loved one.
My dad in the 1960's "fixing" the toilet. He always was a jokester!!!
Your loved one is not just some generic living and breathing person in the Early, Middle or Late stage of Alzheimer’s. He may not be able to do everything he previously could – maybe he’s not even able to speak – but you can still celebrate him as a human being. Everyone mourns what’s been lost; hardly any one celebrates their loved one’s remaining attributes. I learned a lesson from my father during the middle stages of his dementia. I was quick to finish his sentences, or rush him along by answering people’s questions for him. My dad didn’t have to use words to express his displeasure when I did that. He slumped in his chair, looked at me, and let out an exasperated sigh. I stopped right then and there and made no further attempts to rush him as he conversed. Doing so would take away one of the abilities he still had – talking and getting his point across. It may have taken him a long time to complete his thought, but he still had the ability to do so. Please don’t take away the remaining vestiges of your loved one’s independence and abilities. If you feel compelled to feed your loved one just because they take a long time to eat their meal, you’re training them to rely on you for that assistance when they could have been doing it on their own. Who cares if it takes 60 minutes instead of 15 to finish a plate of food? If they’re still able to feed themselves – celebrate that ability. Don’t take it away for your own convenience.
Walk into their reality – don’t force them to enter into yours.
We’ve all experienced conversations with our loved one wherein he or she talks about things that didn’t really happen, although they are convinced that they did. What’s the harm in agreeing with them and going along with their story. Your wife says, “Didn’t you enjoy that trip to the Grand Canyon we took with the kids a few years ago?” O.K. – first of all you don’t have any children, and second of all, you’ve never been to the Grand Canyon. Instead of trying to convince her of what’s real – and making her feel bad/ashamed in the process – talk about the great view, or how all the kids fell asleep in the car and missed the entire gorgeous spectacle. I can guarantee that if you change your paradigm regarding this development, both you and your loved one will be better off. The Alzheimer’s Association has a great adage that they offer us caregivers to help us along the way. If you don’t insist – they can’t resist. I challenge you to go with the flow instead of trying to paddle upstream. Don’t cause contention. A little make-believe goes a long way and harms no one.
AARP magazine reviewed the book Dancing with Rose: Finding Life in the Land of Alzheimer’s by Lauren Kessler. This memoir by Ms. Kessler is portrayed as “an Alzheimer’s tale that’s warm, uplifting, even hopeful – qualities not normally associated with the illness. This odd dichotomy – joy atop a ravaging disease – makes this book a refreshing standout.” Alzheimer’s and other dementia have the ability to peel away a person’s former mask to allow what’s underneath to surface – pleasant or not. What Ms. Kessler learned in her journey with her mother is that “if viewed from a different perspective, Alzheimer’s is not the end of personhood.”
Yes – dementia changes who your loved one is. It oftentimes reduces him or her to childish, and then infantile behavior. But they are still a person. They are no less worthy of your respect and your compassion. This hardest task of your life will end some day. In the interim, may you be merciful to your loved one and may those with whom you are associated support you along the way.
Numerous authority figures are entrusted with your loved one’s care – most of them a fraction of their age. If you can’t be a physical presence for your loved one what will you do to bridge the gap between physical absence and an effective long distance presence?
My mother and my daughter, circa 1976.
My father was diagnosed with Alzheimer’s at the age of 84 and died in 2007 at the age of 89. By the time of his diagnosis he had been living in a Continuing Care Retirement Community (CCRC) for seven years. His wife, my mother, died a month before they both were to move to this CCRC located in Oregon state. My mother was truly looking forward to the move with my dad but on September 24, 1994, she was granted the wish that she had thrown into the universe many years earlier – that when her time came, she wanted to die in her sleep. My father still moved to the Oregon CCRC because at the age of 77, he knew he still had a valid reason to move there. Both he and mom didn’t want to be a burden to us three children, so moving into a retirement community that would meet all the needs of his aging body and mind was dad’s gift to us.
Dad, myself, and his wife Barbara on his 87th birthday.
A few years after my mother’s death, dad married a resident of the CCRC and they had a wonderful late-in-life marriage. Dad’s wife, Barbara, died from complications of Parkinson’s in 2003 so once again, dad became a widower, but this time his biggest challenge was that he was in the early stages of Alzheimer’s disease. He was still able to live semi-independently in an assisted living apartment at the complex and he was able to perform his activities of daily living (ADLs.) Of us three adult children, the job of being dad’s caregiving team leader quite naturally fell to me. I had worked in the senior care industry for several years so I was quite familiar with caregiving lingo and body frailties, not the least of which was Alzheimer’s and other dementia.
Dining room at my father's facility.
Initially, the miles that separated us wasn’t all that challenging. He was still active, was fully capable of getting himself up in the morning, taking his medications, getting to the dining room, etc. Us children would call dad frequently – and he still had the ability to call us – and we continued our visits throughout the year and although his dementia was obvious to us, we knew he was in good hands and that he was functioning quite well. The staff was very attentive to him and if they had concerns, as his health care representative and financial power of attorney, they kept me abreast of the latest, the greatest, and the ever-increasing not-so-greatest.
The not-so-greatest happened one frightful evening. Dad called me telling me that he felt very agitated and he couldn’t stop walking around his apartment; he couldn’t settle down; he didn’t know what was going on. I asked him if he had recently taken any medication and he replied, “Just some cough syrup.” “How much did you take?” “I don’t know.” So while I had my father on my home phone line, I called the front desk of the facility on my cell phone and told them that my father was having an emergency in apartment #94 and a nurse needed to get there immediately. I kept my dad on the phone and told him that a nurse was on the way to see him and that he would be taken care of very soon. The nurse arrived quickly, and the emergency was averted.
Bottom line? We now knew that dad was no longer capable of managing his own medications. He took way too much cough syrup that evening and it caused his heart to race, resulting in extreme agitation. This precipitating event was the start of his noticeable decline and medication management became the first ADL for which my dad needed assistance.
The above example barely scratches the surface of what many of you are dealing with. Your long distance eyes and ears seem thoroughly ineffective and you’re concerned about your loved one’s well-being. There is hope for the long distance caregiver. It’s not the same as being there, but this hope somewhat bridges the long distance caregiving gap. Part II of this article, published December 4, 2011, addresses some practical steps you can take to help in your caregiving journey.
A team is only as good as its members. If the playbook isn’t carefully followed, success is unattainable.
The scenario for this article centers around care for Mom. It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home. Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives. What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal. All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.
EGO. n. a person’s sense of self-esteem or self-importance. Brothers and sisters, please check your egos at the door. The exercise of one’s ego is so self-involved that the input of others, most likely controlled by their own egos, clashes with an individual’s perspective. Acknowledge that egos are front and center, but either check them at the door, or put them high up on a bookshelf to be retrieved at a more appropriate time, and work together for the common good, not one’s own good.
SELFISH(NESS). adj. concerned chiefly with one’s own personal profit or pleasure at the expense of consideration for others. I’m seeing a trend here. Ego and selfishness go hand-in-hand and truly have no place in a team dynamic.
COMPETITION. n. the activity or condition of competing against others. A successful sports team does not compete against its own members – it saves that for its opponents. Your brothers and sisters are your allies, not your opponents, so you will all benefit from considering each other as such. You want the same thing – the best care experience for your mother – so your common goal will be more effectively reached when all of you play on and for the same team.
SENIOR(ITY). n. a person who is a specified number of years older than someone else. Just because you’re older than your sister doesn’t mean your input is more valuable than hers. Your younger siblings are just that – they’re younger, not stupid. I know that sounds harsh but I’ve seen this time and again where siblings maintain the same perspective of their childhood sibling relationships and it becomes a barrier towards moving forward as adults. Once you reach a certain adult age, those differences no longer exist. It’s hard to break away from the age hierarchy paradigm, but break away you must.
SHARED RESPONSIBILITY. You’ll rarely find a family that carries the caregiving burden equally. Some members will do more than others, either by virtue of their proximity to Mom, and/or due to their abilities. But a greater percentage of tasks does not necessarily equate to a greater percentage of input regarding Mom’s caregiving. Arguably one could say, “You don’t care enough to help out so we don’t care about what you have to say.” One could say that but doing so is counterproductive.
I list the above traits because they can be very destructive when complex issues of aging and caregiving come into play. Imagine trying to come to a consensus of opinion regarding an appropriate level of care for Mom at any given time, or managing the financial dilemmas often inherent with the caregiving process; or the emotion-packed subject of end-of-life issues. Respect for each others’ opinions will go a long way towards paving the road with fewer speed bumps.
A caveat: I acknowledge that some family histories are far more complicated, and more dysfunctional, than others. Because of the unhealthy years that many children have experienced growing up, far more is on the table when working with one’s siblings. In those circumstances, a third-party unbiased counselor can be a valuable addition to the care team.
My question to you wonderful caregivers out there who have wrestled with this caregiving team challenge: how did you iron out the difficulties, or did you?
If you do not have any family members, please look at my article Solo Caregiving.
What’s a pitcher without a catcher? A quarterback without a receiver? A point guard without a center? Individuals – that’s what they are. They are not a team. Caregiving should never be an individual effort because quite frankly, one person can not do it all.
Take a deep breath; think happy thoughts; and do your best.
Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get. For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals. As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever. Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor. He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care. Getting on the approved list might involve one or both of the following:
Facility Care Plan/Residential Agreement. Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition. There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care. Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns. If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
Power of Attorney for Health Care. This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own. I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.
Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.
Alzheimer’s Walking Team: myself, my hubby and my brother
Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths. Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks. As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load. The good news, however, is that the GM is not alone – there are additional members of the team.
FINANCE MANAGER. Your older sister is a finance whiz who’s very comfortable crunching numbers. She gets to take over the day-to-day system of bill paying, investment monitoring, and the like. You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.
INSURANCE MANAGER. One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare. Congratulations, his strength will contribute greatly to the whole. But you don’t have to work for an insurance company to excel at this task. Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies. The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid. This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance. But effective Finance & Insurance Managers can successfully get the job done.
TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month. Terrific.
Anyone need a cab?
That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized. Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way. This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.
FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING. Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road. If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them. My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.
A team’s success is attainable – but each member has to dedicate themselves to the task at hand for that to happen.
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 scenario for this article centers around care for Mom. It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home. Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives. What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal. All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.
Living: the ultimate team sport 