Health & Wellness
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.
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.
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.
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.
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.
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.
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.”
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.