Health & Wellness
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.
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.
Baby Boomers: what topics interest you?
What do you want to read and comment on? I thoroughly enjoy this blogging experience but it’s not satisfying enough for me to have a one-way written conversation. My family would be the first to say that once I get going, it’s hard to shut me up. (As of March 2016, I’ve posted 700 articles.)
But I want to enhance my own Baby Boomer experience with your wisdom, advice, successes, even failures. It’s in those practical experiences that we grow the most.
So I sincerely covet your input as to what would draw you to my “Baby Boomers and More” Blog more frequently. What topics interest you enough that you would provide comments and even contribute your own articles that I’ll press/link to my own Blog site?
Truth be told? This is not just my site – it’s out there for everyone. I hope you’ll be candid and honest with your input. Bring it on – I’m good and ready for your Baby Boomer Blog ideas.
Long distance caregiving: Part II
Whether your aging parent lives in a long-term care (LTC) facility or in his or her own home, if you live more than an hour away from them, you’re their long distance caregiver. What are you doing to protect them, and yourself, during this trying time?
As I mentioned in Part I of this article, published December 3, 2011, bridging the gap between you and your parent can be a difficult task. Being able to monitor your parent’s day-to-day life from a distance, especially when a parent has dementia, is a frightening task, and it’s one for which you need suitable support. What follows are suggestions gleaned from my experiences with my father.
If your parent lives in a long-term facility:
- If you haven’t done so already, meet all the department heads entrusted with your parent’s care. Do what you can to be on record as the go-to person. If you are your parent’s health care representative and/or financial representative, make sure that the facility has the appropriate legal documents in your parent’s file. Whether a crisis arises or you simply need to discuss your parent’s condition, making sure the staff know of your legal authority to discuss care will make your, and their, job a smoother one. If you don’t have those specific legal documents in place, and if your parent is still able to designate you as the approved contact regarding care, do so as soon as possible.
- When it’s time for your parent’s care conference, a time when the resident – if able – and care staff discuss the resident’s plan of care, be present by phone. This is a more common occurrence than you may think. Share your observations of your parent’s behavior, phone abilities – or lack thereof – and don’t be shy about asking detailed questions about your parent’s care, regardless of how intimate the details. As your parent’s advocate, you have the right to question the staff’s care plan – and you should.
- Meet your parent’s primary care physician. Be sure that he/she has it on record that you are your parent’s health care representative. Being able to talk to my father’s doctor to discuss all of his medical conditions, as well as all treatments, including medications, kept me in-the-know and enabled me to keep my siblings informed. My brother and sister were also a big part of my dad’s life and they were also long distance caregivers. They told me time and again how appreciative they were that I was on top of dad’s care, and that I was able to keep them informed at all times.
If your parent lives at home and is in the early stages of dementia:
- Follow point 3 above because even if both of your parents live in the home, you probably can not rely on them to be on top of their own care. The parent without dementia is the on-site caregiver, and at his or her advanced age, might not be able to adequately function on his own behalf, forget trying to do so for his spouse with dementia. If your parent is living alone without the presence of a family member, you have no choice but to nurture a relationship with his/her medical team so that you know what treatment your parent is receiving; what medications have been prescribed; and what long-range care goals should be addressed.
- Engaging the help of trusted friends, church members, and neighbors might provide some sort of care continuity as they do drop-in wellness checks of your parent. If you have people who are able to provide this type of observational visiting, I suggest you utilize web services, such as the following, that can help get you organized: Lotsa Helping Hands, which is “Free, private, web-based communities for organizing friends, family, and colleagues – your circles of community – during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar”; or Caring Bridge which is “Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.” Additionally, Caring From a Distance provides resources that are available in your parent’s local area: “Whether you live across-the-world or an hour away, you and your family face special challenges. Where can you find the local resources they require? How can you, your family, and friends communicate in an emergency?”
What if the burden is too much for you to bear?
You’re in good company. If I had been familiar with the services listed above I think my caregiving journey would have been a smoother one. But believe it or not, this type of caregiving challenge is one that is relatively new in the grand scheme of things. If you’re losing ground as your parent’s long distance caregiver, it might be time to consider the services of a Geriatric Care Manager. The National Association of Professional Care Managers is a non-profit resource that can put you in touch with someone who might be able to provide the bridge you’re looking for.
Consider the cost of managing your parent’s care from a distance:
- time off from work;
- driving and flying time to your parent’s location;
- hotel accommodations, food and other travel expenses; and
- the emotional and physical toll on yourself.
Paying a Geriatric Care Manager to manage your parent’s care, whether he lives at a long-term care facility or in his own home, may greatly pay off in the long run.
Whatever you choose, and which ever direction you take, I hope you will carefully consider the best option for your particular situation. As I’ve said in past articles, only you know what is the best fit for your family. Consider all the alternatives and move forward confidently.
Long Distance Caregiving: Part I
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 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.
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.
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.
Denial: Roadblock to better health and better care.
STATEMENT: Carol’s having a little problem with her memory.
Initially this might be an accurate statement. Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.
Imagine denying a person’s cancer diagnosis. There’s no need to treat it. I just have an uncontrolled division of abnormal cells in my body. It’s not that bad. It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms. I’ll do something about it when it really gets bad. Ill-advised, right? Most people would not follow that path. But Alzheimer’s disease, and other dementia, are no less serious. As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is. There is no cure and no potential for one at this time.
Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail the cancer’s effects on their lives. The sooner one does something about it, the better the chances of successful treatment. For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves. This is an unfortunate perception and one that should be put to rest. Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye. Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.
THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:
- The window of opportunity to start early drug therapy can be a very narrow one.
The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.” A thorough medical exam should be conducted to rule out any cause other than dementia. Some medical conditions and/or medication usage can mimic cognitive decline. All the more reason to act early to rule out what might be a readily fixable temporary condition.
If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives. Now you’re in the driver’s seat, regaining some amount of control over the disease.
- Those close to you need to be informed.
As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one. You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own. Let your family and close friends know early on what you need from them. Partner with them to become a formidable force upon which you can rely. You need support and it’s available from several resources.
- Join a local Alzheimer’s Association support group.
The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you. Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you. Within that local Chapter you’ll then be able to search for a support group by typing in your city, county, or zip code. You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis. You might also find support groups for patients who are in the earliest stages of their illness. Both groups can do much towards providing you with confidence and hope when none can be found. These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease. If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals. These alternative groups are very adequate options when no other groups are available.
If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life. You deserve all the support and medical attention you can get. Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.
The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”
Understanding Alzheimer’s & other dementia
There are diagnostic tools in place that try to make sense of the symptoms of Alzheimer’s and other dementia; some are conclusive, while others are simply an educated guess because knowledge of this disease is evolving day by day in the medical and scientific fields. And for certain, no two people with the disease have the same manifestation thereof.
Whether or not an actual diagnosis is presented, you as family members, or perhaps as the patient, are struggling with this new reality and are attempting to carry on as normally as possible.
In the days ahead I am going to submit four articles addressing some of the challenges inherent with this disease. I am not an expert – I have no PhDs and no medical degrees – but what I do offer is advice gleaned from my own practical experience and from that of those with whom I have been fortunate to be acquainted.
The four articles will be as follows:
- Denial: Roadblock to better health and better care.
- Driving with dementia: the dangers of denial.
- Long distance caregiving (provided in two parts.)
- Preserving your loved one’s dignity.
As Charles Darwin once said: “It is not the strongest of the species that survive, nor the most intelligent. It is the one that is the most adaptable to change.”
I hope that ALL of us will have something to offer as these four articles are presented. I covet your input and hope that you feel free to provide it.
Adult children: taking care of an abusive parent.
When an adult child’s earlier relationship with a parent has been wrought by abuse, how does the child manage to provide care to this parent who reigned verbal, physical, and/or sexual abuse upon him/her?
- Is it possible? Yes.
- Is caregiving required of an adult child in this circumstance? No.
- Is the child wrong to turn his or her back on a parent requiring care and attention? Absolutely not.
Every individual’s situation is unique due to the extreme nature of this type of family dysfunction. There truly is no textbook answer that fits each circumstance. Not only is the situation unique but we’re talking about emotions – and how one deals with those emotions. We’re talking about the balance of how the previous harm has been handled and whether or not contact of a caregiving nature may prove newly damaging to the adult child/victim. For the purposes of this article, we will assume that the adult child has decided to participate in her abusive parent’s caregiving. CAVEAT: Anything I offer in this article is not based on personal experience, but rather, experiences that have been relayed to me through my work with adults who are also caregivers for their parent. I’m not an expert, I’m only an observer. I covet any input that my readers may be able to offer.
The caregiving well is shallow.
More likely than not, the well from which the child can draw may be very shallow. If the adult child has chosen to keep her distance from the abusive parent for many years, being suddenly thrust into one of the most difficult jobs she will ever perform could be a next to impossible task. Let’s say that she has decided to give it a try but she has been wise enough to set up an escape route that she will follow when the going gets tough. I don’t necessarily mean an actual, physical escape route. Rather, she has established the upper limit that she will bear should matters get out of hand emotionally or physically. She makes a commitment to herself that sets a comfortable threshold after which she will walk away, guilt free, knowing she made a valiant effort. She is strong enough to acknowledge that at some point she may need to cease all caregiving efforts.
As I mentioned in a September 2011 Blog entry, “Deathbed promises and how to fulfill them,” (found in the Caregiving category of this site) even adult children with a fabulous relationship with their parent struggle greatly in their caregiving efforts. Whether you end up being a hands-on caregiver (providing the care in your parent’s home or yours) or you find yourself as the primary family contact with the staff caring for your parent at a long-term care (LTC) facility, you are pulled into the intimate aspects of a parent’s life and it is not an easy role in which to function.
Feeling obligated vs protecting oneself.
Too often, we do things out of a feeling of obligation rather than heartfelt compassion. In the situations outlined above, obligation will either be the only thing that places you in the caregiver role, or it will convince you that you’re not emotionally available to walk down that rut-filled path. I am an advocate for vulnerable adults – I live by that mantra – but in this situation I feel that the person needing the most advocacy is the adult child who still struggles with the effects of a past abusive relationship with a parent. If you are not able to provide the caregiving, please know that there are others who can do so in your place. You don’t have to be “it” ‘in this situation, and having someone else step in could very well be the best caregiving scenario for you, and your parent. If you ever find yourself in this role, please do not act alone. The community around you: churches, local government health service organizations (such as that found in Washington State), organizations that protect the abused, are an absolute required tool in your toolbox to be an effective caregiver, and an emotionally protected adult child.
Anyone out there who has been in this role or is currently in this role of taking care of an abusive parent?
Your input is very valuable and could very well help those struggling with this scenario. If you feel strong enough to share your story you have my thanks for opening up on this Blog.
On being grateful….
I’m truly grateful for this posting by Morris in his Musings from Third Base blog. My mother always told me that you don’t have to look very far to locate someone worse off than yourself. That doesn’t mean you ignore the valid feelings of desperation or frustration that one feels from time to time – especially as we become more and more of a Baby Boomer. But what it does mean is that we can probably honestly say that we also have a few reasons to celebrate during this stage in our lives. I don’t wait for the grandiose, huge reasons to celebrate – I don’t want to wait THAT long. Instead I celebrate even the smallest of accomplishments, or good times; that way I have far more celebratory moments in my life. Forget about not SWEATING the small stuff. Let’s CELEBRATE the small stuff that give us reasons to be grateful.
Caregiver: put on your oxygen mask first.
The airline flight attendant gives pre-flight safety instructions:
“In case of a loss of airplane pressure, oxygen masks will drop from the overhead compartments. Put mask on yourself first before assisting children or those not able to help themselves.”
Why? Unless the able-bodied person is fed oxygen, he won’t be able to help any one else.
Whether you are actively providing care to your loved one or you are the point-person managing that care, you are stretched thin.
Your reserves are low.
Your tank is nearing empty.
You’re on the path to caregiver burnout – or you’ve already arrived.
You love to think that you can do it all:
- have a full-time job, and a full-time family;
- have numerous duties in your own household that obliterate any “idle” time during your day;
- you’re on the community board or other volunteer activity; and, oh yah
- you’re responsible for your aging parent’s, or spouse’s, day-to-day maintenance.
Not only are you burning the midnight oil; you’re burning the candle at both ends and about to self-destruct.
“But I have to do this. I have a lot of people counting on me to take care of dad. If I don’t do it, who will? I won’t be a dutiful son/daughter, if I walk away from all my responsibilities!”
Oftentimes what happens in these situations is a person ends up being of no good to anyone.
- You’re taking more and more time off from work either due to your own illnesses or to attend to the needs of others;
- Your spouse and children are suffering from the constant stress that your over-extension of commitments places on the household;
- The project for which you volunteered at the PTA or Boy Scouts, or FILL IN THE BLANK, is dead in the water because you don’t have the time or energy to devote to the cause; but
- Your loved one for which you provide care is doing just fine because he/she is receiving all of your attention.
Keep this up and you’ll be no good to anyone because a vehicle doesn’t run on an empty tank and neither can you. It’s time for you to attend your own “care conference” to come up with a realistic plan of how to direct your own health and well-being.
The “To Do” List vs the “Don’t Do” List:
You weren’t put on this earth to help everyone and despite your well-meaning belief that you can do it all – you can’t, and you’ll never be able to do so.
- Write a list of everything you currently feel obligated to do each week. Now cross out a third of that obligation list. Do what you can to delegate duties and/or designate other willing people to carry a third of your burden. You should already start feeling better.
- Now eliminate – or temporarily withdraw from – another third of your obligations. You won’t offend others by doing so if they know you well enough to understand your reasons for stepping back a bit. I’m certain they know that they will be able to count on you later when your life situation isn’t so acute. You’re not dropping out, you’re just putting yourself on pause.
- Reconnect with the family in your household. Don’t risk losing your family. You need them on your team and they need you. They will be around long after the loved one for whom you’re providing care passes away. You want your family with you now, and you’ll want their support later.
- Assemble a caregiving team. In my blog entries: Caregiving: The Ultimate Team Sport and Solo Caregiving I address the importance of reaching out to others and tapping into resources that will help you stay sane and healthy while on this caregiving path.
You owe it to yourself, and your loved one, to start taking care of yourself. So place your own well-being at the top of your priority list. I can pretty much guarantee that you won’t regret it.
I sang for my Dad today … January 30, 2011
I sang for my Dad today … January 30, 2011.
I am so pleased that I FINALLY figured out how to post someone else’s blog entry and I do so with this one by Lark Elizabeth Kirkwood. How wonderful that Lark was able to have that musical connection with her father at that time in his disease. One of the last songs I sang to my father, a couple hours before he died, was “Aloha Oe” which is a good-bye song in Hawaiian. I know he heard the song as he rode on the wave of departure from this Earth. Reading Lark’s many posts about the positive effects of music on those with dementia or brain injuries is so timely as I am still reeling from the positiveness of Diane Sawyer’s 20/20 program on ABC that was broadcast earlier this week. Her story of Gabrielle Giffords and Mark Kelly was inspirational on so many levels. Music had, and continues to have, an AMAZING healing effect on Congresswomen Giffords recovery from that horrific gun shot injury on January 8th, 2011.
Be an advocate for your aging loved one.
If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?
In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility. Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job. By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.
I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests. It’s easy to have a perhaps unwarranted laid-back attitude because:
- mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
- mom is living in a ritzy/expensive place so it must be the best option for her; and/or
- this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.
I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom. Let’s take each point separately.
- Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one. However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year! There’s a reason why caregiver turnover is so high. This job is TOUGH and the pay is unconscionably low. A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years. This report is worth your while to read. Learning is power – right?
- Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided. Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great. Sometimes what I call “generic” buildings oftentimes provide as good or better care.
- The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care. So a waiting list does not necessarily represent quality.
So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.
SPEAK UP. You don’t have to be a squeaky wheel to get the grease.
- Be persistent yet respectful.
- Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
- Be present: in person if you live nearby or by phone if you are a long distance family caregiver. Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.
OBSERVE. When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance. How does it differ from visit to visit? Is her room tidy, clean and uncluttered? One way to observe staff members in action is to accompany your mom on facility outings. Observe the staff’s interaction with the residents. Do they speak respectfully to them? Are they patient with them? Do the residents enjoy their outings or do you get the impression that these outings are forced upon them? All of these impressions are important towards discerning what goes on in your absence.
ADVOCACY RESOURCES. Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident. Each state in this country has a LTC Ombudsman program. Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.
Senior Health Specialists? Geriatricians? Where are you?
The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.
Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health. “What about geriatrics?” I ask them. “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!” They don’t buy it, especially since Geriatricians are one of the lowest paid medical specialties amongst the medical community.
Ugh! Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us? Not very many according to the linked article above. According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older. No wonder people can’t find a doctor who specializes in Senior Health! I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients. Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia – as they do their patients in their 20’s thru 70’s. That just won’t cut it.
Older patients have more complex conditions – and more of them. If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment. “What can you expect at your age Mrs. Jones? Be glad that you’ve lived this long!” I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.
Think about it my fellow Baby Boomers. Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing? I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment. The vulnerable adults among us might not realize that they have choices. They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives. Who loses in that equation? We all do. If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?
Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us. What are your thoughts about this glut of Senior Health professionals? How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?
Senior Citizens are NOT children!
An epidemic has taken hold of this Nation. Adults 70 years or older are being infantalized. Adult children have decided that their parents can’t do anything without their guidance. Service employees, e.g. restaurants, retail store clerks and the like, feel compelled to talk down to their Senior customers. Caregivers in long-term care (LTC) facilities further degrade the residents with baby talk. These residents downsized their living space; don’t downsize who they are by treating them as anything other than who they are: intelligent adults.
Only you can put an end to this epidemic. If it is not eradicated by the time you reach the Senior Citizen age, you too will be subjected to its horrors.
Mom moves into your house because of a financial or medical reason, and suddenly Mom has no say in what goes on in her life. Everywhere she turns, her son and daughter-in-law are bossing her around in the guise of trying to do what is best for her. Mom wants to stay up late reading or watching TV and she’s told she should go to bed. Mom wants to do this activity, or that activity with friends outside of the home and she’s told not to leave the house because the son and daughter-in-law want to make sure she doesn’t get into any trouble.
Your Mom raised you and somehow you turned out o.k. She must have been a good parent, teacher, guidance counselor, child supporter, you name it. Just because she is living under your roof doesn’t mean she’s lost her right to have a say in matters that go on in the household. Ask her opinion from time to time. Let her somehow contribute to the functioning of the household, e.g. day-to-day participation in household functions, helping you with decisions you’re making about your own lives. Doing so will restore her pride and make her feel less superfluous. It’s quite o.k. to be concerned about her well-being – you should be – but you can do so without suffocating her.
Why is it that wait-staff, retail sales clerks and the like feel an immediate need to speak super loudly to a Senior citizen customer? In my work with the elderly, I made this very mistake by talking loudly to a LTC resident I had just met. She finally interrupted me, put her hand on my knee and said, “Irene, I’m old; not deaf. Please stop yelling at me.” So simply lower your voice and don’t call her a pet name such as “Sweetie,” “Hon,” etc. I’ll never forget my mother’s phone call to me many years ago when she was barely over 70 years old. She went to the Dept. of Motor Vehicles to renew her driver’s license. After filling out the paperwork and getting her photo taken, it was time for her to leave with her newly issued license. The DMV clerk then said quite loudly, “Now Sweetie – before you leave, make sure that you have everything with you that you came with.” My mother called me that evening, both angered and in tears, bristling at the way in which she was treated. In my mother’s eyes, the DMV clerk downsized her intelligence and abilities and that thoughtless act forever changed my mother as a result. Please treat your Senior consumers with respect and with dignity. They know they are older than you are – you don’t have to remind them of that fact with your ill-placed attitudes and gestures.
When I was 58 years old, a couple years ago, I picked up some items at my local grocery store and used the self-checkout counter to purchase my groceries. As I was leaving the store, the retail clerk said, “Thanks Dear!” A male customer who was older than me also went through the self-checkout at the same time but that retail clerk didn’t say a cutesy name to him! Oh Boy – she didn’t know what she had just started. I didn’t make a scene. I left the store, wrote a letter to the manager and included this blog entry/article with a suggestion that he update his store training to include my suggestions about how to treat Senior Citizens. He wrote me back to thank me and stated that he planned to provide updated sensitivity training to his staff. BRAVO!
Professional LTC caregivers.
Oh boy – I see this a lot. Caregivers who, God bless them, have a job that not many of us would willingly perform – especially at the low hourly wage at which they are paid. I admire you and I respect you. You’re a better person than I because I don’t have what it takes to do what you do. But please address your patients/residents by their given names. I would even go so far as to suggest that you call them by their surname until they give you permission to use their first name. “Good morning Mrs. Smith. It’s so good to see you today!” That’s a far more respectful greeting than the following: “Good morning Sweetie Pie. Let’s get you ready for breakfast, shall we Hon?” YUCK! God help the person who addresses me that way when I reach my Senior years. I’m a friendly person at heart, but I too would bristle at any condescending treatment directed towards me. (And considering how I reacted to the cutesy name directed at me in the supermarket a few years ago (above) I may not be quite as civil in my later years.)
BOTTOM LINE FOR EVERYONE CONCERNED. These Senior Citizens with whom you have contact survived the Great Depression and at least one World War. Surely they have the ability, and the right, to be treated with respect and given the benefit of the doubt when it comes to making their own personal decisions. Don’t take away their ability prematurely. Eventually they may not have the ability to function independently, but it doesn’t do them any good for you to hasten the time in which that may happen.
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.
My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.
There is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!
I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
- “Hey Sam, call me if you ever need some help.”
- “Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.”
- Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. You’re basically forcing him to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.
Family dynamics that hamper caregiving success
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.
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