There is no such thing as easy caregiving – anyone who has been, or is currently, a caregiver for a loved one with Alzheimer’s or other dementia can attest to that fact. The good news, however, is that every once and awhile we’re fortunate enough to be exposed to glorious snippits of wonderfulness that help us through the day. Here’s hoping that this link does just that for you.
Bear with me – don’t judge me quite yet.
If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies? Do you stretch the truth a bit in order to keep the peace? Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life? Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.
How do you jump over the hurdles of negotiating with a loved one for whom you provide care? Here are a few examples that come to mind.
Scenario one: the need to get creative in order to leave the house for personal business. For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours. Then make sure you’re back on time! If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed. Knowing that you’re going to a support group only confirms how miserable she’s made your life. Read the rest of this entry »
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.