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.
More frequently than I can tolerate, I have visited long-term care (LTC) facilities during Holiday celebrations: July 4th, Christmas, New Years Eve, etc., and I find residents in the dementia wing with accoutrements, e.g., July 4th hats, reindeer horns, festive party hats, that the resident with Alzheimer’s or other dementia would NEVER consider wearing if they had a choice.
My suggestion: before you allow anyone to adorn your parent, spouse, grandma/grandpa, aunt/uncle with a party adornment, ask yourself this question:
What would ______ want?
Why do facility employees feel obligated to dress up their residents with what can only be described as hideous garments/accessories during Holiday seasons? It’s demeaning. It’s borderline abusive. It’s just not right unless the resident himself has chosen to wear such accessories.
Becoming a clown does not equate to living a dignified existence.
Prior to living in long-term care facilities, these senior citizens lead distinguished lives, fought in wars, managed households and families, and most likely survived tough financial times. These men and women just happen to be older now, but no less important; no less dignified. In one of my earlier articles, Be an advocate for your aging loved one, I stated, “If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?” Chances are in these costumed situations during the Holidays, your loved one doesn’t even see themselves in a mirror, and if they do see themselves, the image they’re seeing may not be comprehensible to them. Would they want to look like a child wearing a season-appropriate party hat? Would they have worn that hat in public prior to the advancement of dementia?
This brings to mind another article, Senior citizens are NOT children! In that article, I broached the topic of talking down to Senior Citizens by using cutesy names: caregivers do it, customer service employees do it, DON’T YOU DO IT! We have to get out of the mindset that our older population is somehow less worthy of respect simply because of their advancing age. If anything, the opposite should be occurring. All of us should honor the lives that were – and the lives that still remain. This station in life, these circumstances, are not who they are. They are simply where they are right now. Use the memories that you retain of your loved one to promote the true person they are. Don’t let others – caregivers or well-meaning friends – define your parent/spouse/family member. It is my firm belief that regardless of the severity of a person’s Alzheimer’s or other dementia, the essence of the person remains in tact. Make it your responsibility to enhance other people’s understanding of your loved one by correctly defining their true essence.
Dignity and quality of life are a right, not a privilege.
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.
Your Dad lives in a long-term care (LTC) facility and you’ve found that these visits really take a lot out of you and your Dad. You’re bored, your Dad is bored, and you’re beginning to wonder if these visits are even worth it. Do you want some encouraging ideas to make your visits beneficial to everyone involved? Here are some suggestions that might take the hurt out of the equation.
ACKNOWLEDGE THAT THE LTC FACILITY IS NOW YOUR DAD’S HOME.
The longer your Dad lives in this LTC facility, the more it will feel like his home. That’s a hard pill to swallow when you’re accustomed to visiting him on his home turf. His new normal is his 200 square foot (if he’s lucky) LTC apartment. Remember how painful it was for your Dad to move away from the family home to his apartment in the facility? One can not minimize the difficulty of downsizing a lifetime of emotional attachment to a household of personal objects to a mere few that will fit in his small living space. Respect for the remaining space allotted to him will go a long way towards making him more comfortable when you invade that space.
HOW I ADJUSTED TO MY DAD’S LTC LIVING SITUATION.
I would never attempt to offer any advice if I too hadn’t been through what you’re going through. At the age of 84 my father was diagnosed with Alzheimer’s. Dad lived in a Continuing Care Retirement Community (CCRC) in Oregon state. At the time of his diagnosis he was living in a decently sized one-bedroom apartment “on campus” and for a few years was able to function quite well in that space. When I visited from Seattle, it was pretty challenging coming up with ways in which to engage him and make my visit a valuable time for him. He was still active, however, so we went on picnics, took walks, shopped for needed personal items, and our days were filled with purposeful activities. As his disease progressed, however, he moved to the dementia unit of the CCRC and shared a room with another gentleman who also had dementia. Now what? I certainly can’t visit him in his room, and the common areas were populated with other residents who presented challenges to creating a valuable visiting experience for both my father and me. Visits outside the CCRC campus became more and more difficult as my dad’s ability to function outside of his routine rapidly decreased. How could just sitting with him in the dementia unit’s living room make any difference in his day?
IT’S NOT ABOUT YOU – IT’S ABOUT YOUR LOVED ONE.
Well, it is about you, to be sure, but if your loved one’s experience is a good one, chances are your experience will be equally as satisfying. Depending upon your loved one’s executive function, your activity options may not be limited at first. You’re still able to take your loved one to movies and museums. You’re able to go out to dinner and attend family gatherings. You pick your Dad up, he’s happy to go with you, and your time with him is about as normal as it gets. If Dad is physically or cognitively impaired, however, your activity options decrease considerably.
BEING PRESENT WHEN YOU’RE PRESENT.
I think you’ll be amazed at how far a smile and a pleasant attitude will go when visiting your parent or other loved one. You’re of the opinion that you have to be doing, doing, doing to have a successful LTC visit. If being active is a thing of the past, I encourage you to simply be present when you’re visiting Mom, Dad or your spouse. Does he still like to read or watch TV? There’s no reason why he can’t continue to do that while you sit nearby and use your laptop or read a good book. When was the last time you had nothing but time in which to do so? Consider this down-time as some sort of blessing in disguise. Does Dad like certain types of movies – or one in particular – that you can put in the DVD player for his entertainment? Watch that movie with him even though it’s the 100th time you’ve done so. It’s difficult for us to define the movie-watching experience as quality time spent with Dad, but for him it may be just what he needs that day. I know very well how slowly time passes when visiting a loved one whose world has been significantly diminished. But imagine, if you can, being your Dad’s age and unable to come and go as you please. When you visit him, you bring the outside world to him and give the day a whole new meaning.
WHY VISIT DAD IF HE DOESN’T RECOGNIZE ME ANYMORE?
This is one of the most challenging times for a son, daughter (or spouse) to go through when our loved one’s cognitive levels continue to decline. (Please check out other articles on this subject under this Blog’s “Alzheimer’s/Dementia” tab for additional encouragement.) You’ll be doing yourself and your loved one a favor by not trying to force him to recognize you. The Alzheimer’s Association suggests that it is far easier for you to walk into his or her world than it is for him to be present in yours. When you walk into his room for a visit, simply announce yourself, “Hi Dad, Irene is here for a visit.” You don’t even need to qualify your name by saying, “your daughter, Irene.” Your title is not as important as who you are when you visit him. Smile. Speak in a lively tone – not loud, just lively – and let him feel your friendliness and your love. Caregivers can’t give your loved one the love that you have for him – only you can. As difficult as it is to seemingly have lost your identity with him – and it truly is difficult – the fact remains that you are his/her daughter/son/spouse and only you can love him like a family member can.
I sure don’t own the franchise on ideas to employ when visiting at a LTC facility. What has worked for you? What do you suggest? Your ideas may be just the thing that helps someone else weather this difficult time.
The 7-year-old child says, “I don’t want to visit Grammy anymore. She doesn’t remember me and she scares me!”
This is a major dilemma with adult children whose parent has dementia. It’s difficult for the adult to reconcile their parent’s disease progression – and they have a fairly comprehensive understanding of the disease that is robbing them of their parent. Now imagine a child’s inability to comprehend the disease. All they know is that Grandma seems upset when the child visits and on top of that, no longer recognizes him. When one considers that adult children sometimes dread visits with their mother or father with Alzheimer’s or other dementia, it seems easier to just let those visits slide for the younger members of the family. My daughter was an adult when her Grandpa was diagnosed with Alzheimer’s. I can only proffer a guess at what I might have tried in order to make her visits with him a comfortable experience.
Should parents force their children to visit the person whom the child has started to fear?
Forcing anyone to do anything isn’t always the best strategy to follow. In these circumstances, it could almost be considered cruel. My grandparents lived in a different country than my family. Us three kids saw our grandparents maybe six times before they died. Having the opportunity to live near an older relative would have been a novelty for me as I’ve always envied those who grew up with Grandma and Grandpa nearby. With that said, however, I acknowledge that close proximity alone in this situation is not a sufficient motivator.
How can grandchildren still maintain a relationship with their Grandma and Grandpa?
The distracted visit – visiting but doing his own thing as well. If the parents are able to provide some sort of distracting activity while visiting Grandma, the child might get more accustomed to their grandparent’s behavior. The child casually observes how mom and dad interact with Grandma – while still being able to watch their favorite video or play with their hand-held electronic game – and gradually feels more secure being there. Over time, but certainly not immediately, he may realize that Grandma is no longer someone to be feared and may attempt his own interaction with her.
Parents visit without the child and provide engaging updates to their child when they get home. Parents can keep their child connected by telling him the funny/cute thing Grandma said that day when they visited and also making the child aware of the positive things that are happening in Grandma’s life to balance out the overwhelming negative that pervades it. Who knows, this reporting tactic might actually lead to the child’s “distracted visit” next week. Curiosity may be just the ticket that gives the child the desire to see Grandma.
There’s SO much more that needs to be said on this topic.
I haven’t even addressed the issue of early-onset dementia that thrusts young children and teens into an extremely challenging relationship with a parent whose disease robs their children of the guidance that their parent might normally provide during their adolescence. What can you, the Baby Boomers and More Blog audience, contribute to that very unfortunate, and ever-increasing reality, in today’s world?
I’m very much looking forward to what you can add – successes and failures – that will benefit those of us searching for advice and guidance.
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.
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.
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.
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.