Tag Archive for: caregivers

7 tips for navigating holidays with a loved one who has dementia

in /by

The holidays are upon us, and whether your loved one is experiencing cognitive impairment due to Alzheimer’s disease, Parkinson’s disease, stroke, or any other cause, special planning and considering key changes to family traditions can help make the season more enjoyable for everyone. 

Amelia Anderson-Mooney, clinical neuropsychologist with private practice in Glasgow, Kentucky, and assistant professor of neurology and graduate medical education for the University of Kentucky College of Medicine, said a few small tweaks to annual rituals can go a long way toward making everyone more comfortable.

“Adjusting holiday plans appropriately often begins with a good understanding of what disease stage our loved one is experiencing now,” she said. “If symptoms are mild, small adjustments can make a world of difference.  If symptoms are moderate to severe, it’s likely that we will need to make more substantial changes. In mild stages, many elders with cognitive decline may be able to have a more active role in planning and preparing for family activities. In more advanced stages, their role will very likely be smaller but no less valuable.”

Here are seven tips for making the holiday season more comfortable for your loved one with dementia and everyone else.

Tip 1: Ask and learn

Sometimes we haven’t been fully aware of what our loved ones have been doing behind the scenes of our traditional holiday gatherings. When a loved one receives a diagnosis of dementia, it’s up to us to educate ourselves about the full extent of the responsibilities they have taken on over the years, and then have an open, direct discussion about what that loved one feels comfortable doing for this year’s holiday celebrations.

Anderson-Mooney said it’s important to make sure your loved one with dementia is involved in holiday preparation in a way that is meaningful to them. She said sometimes this can be accomplished by asking, simply, “What can we do to make the holidays easier for you?” Anderson-Mooney added that it’s critical to have this conversation with the understanding that elders with cognitive change may need additional time to gather their thoughts and respond.

“It is also important to remember some elders with cognitive change may not fully understand their limitations, which means a more substantial change in approach for us,” said Anderson-Mooney, who is a National Academy of Neuropsychology (NAN) board member and chair of NAN’s publications committee.

Tip 2: Delegate, delegate, delegate

If the person in your family with dementia is the person who has hosted holiday traditions, it might be necessary to rethink the entire celebration. Perhaps your loved one no longer feels able to prepare their home in a way that makes them feel ready. Perhaps they feel they can do it, but they need help. Anderson-Mooney said it’s always a good idea to offer to help make a list and gather volunteers to pitch in.

She added: If your loved one with dementia no longer feels comfortable handling the family meal solo, delegating tasks could be a golden opportunity to learn family recipes and traditions straight from the source so they can be passed down to future generations. 

Tip 3: Keep tabs on overload

Anderson-Mooney noted that it’s also important to consider how much holiday cheer loved ones can handle at one time.

People with cognitive change often talk about how overwhelming it is to be in large groups of people, even people they love, because they feel like they can’t follow the conversations well.  Because of this, they tend to withdraw, and that withdrawal can be hard for other family members to understand. If you have noticed your loved one having difficulty interacting in family gatherings during the year, your family may want to plan to have smaller gatherings more often. 

Her advice: Make sure you build the day around what your loved one’s body needs  Plan activities at a time of day when your loved one feels the sharpest and most energetic. Do your shopping outings before lunch. If your loved one feels and operates best in the morning hours, maybe a Thanksgiving breakfast is in order, with smaller visiting groups later in the day.

“The holidays are about being together,” Anderson-Mooney said. “That’s what matters most.”

Tip 4: Make travel easier

Cognitive decline often adds a layer of complexity if your family has traditionally traveled for the holidays. People with cognitive impairment often lean heavily on their daily routine to help them get by from day to day. Travel, by its nature, can disrupt that routine completely.

Anderson-Mooney said this means that travel might be out of the question for some people with cognitive impairment. She added that if a loved one has had trouble adjusting to relatively small changes in their daily routine at home, you can anticipate that they may not adjust well to the larger demands of traveling.

In extreme cases, or cases where a loved one is experiencing significant cognitive decline, it may be wisest to eliminate travel of any kind.

Tip 5: Build in time to rest

Sleep disruption can be very problematic for people with dementia. Anderson-Mooney said in practice, she often sees an increase in confusion and emotional upset from disrupted sleep. Again, if you have seen your loved one struggle to adjust to an earlier wake up time for a doctor’s appointment, or struggle to adjust to time changes or new time zones, for example, unusual holiday schedules or on quick trips can be doubly hard. 

Consider also that traveling itself—whether it’s a one-hour car trip or a six-hour plane flight—can be exhausting.

Most people are familiar with the fatigue we feel after reaching our destination when we travel, even though we’ve just been sitting in a car all day or waiting for a plane. This fatigue happens, at least in part, because our brains are very busy processing all the novel scenery, keeping us safe in traffic, making sure we make our flight connections, helping us remember where we put our carry on bags, and so on. Anderson-Mooney said this fatigue can multiply in a serious way in people with cognitive impairment.

“If travel is in the plans for your loved one with cognitive impairment, consider breaking up the trip into smaller legs or adding a day before and/or after to allow your loved one to recover energy-wise,” she said.

Tip 6: Line up support

If you’re planning to travel for the holidays by car, be very realistic about whether your loved one can handle any of the driving. If you’re flying, airlines help vulnerable elders just as they do for unaccompanied minors. Most of this assistance is available in part because of the federal Air Carrier Access Act and the Americans with Disabilities Act. Airlines are required to offer assistance for seniors such as help in boarding and making connecting flights, and many airlines go above and beyond the basic requirements to ensure that their elderly passengers are well cared for in their travels. (This, this, and this are great websites for more information on the subject.)

Anderson-Mooney suggested that family members may want to consider adding an extra layer of support for loved ones with dementia.

Specifically, she advised that someone in the family (or a hired caregiver) accompany your loved one as the person’s personal “travel coordinator.” This person becomes responsible for carrying your loved one’s medications, keeping track of their valuables, and tracking the itinerary. The person also can be responsible for making sure that your loved one takes their medications on time while traveling and while on the ground at the destination. (Setting alarm reminders on the coordinator’s phone is a helpful way to make sure your loved one never misses a dose.)

Anderson-Mooney said the coordinator should travel with a full, printed list of medications, dose amounts, and dosage times, as well as names and phone numbers of your loved one’s doctors. She added that it’s important to keep the list and the medication in a carry-on bag so it’s not lost and separated from your loved one.

“It’s so important to consciously and deliberately appoint someone to ensure these things are done,” Anderson-Mooney said. “With some medications, missing doses can be dangerous. Replacing medications in lost baggage can be done, but it’s better to avoid the hassle in the first place.”

Tip 7: Providing physical care

Finally, Anderson-Mooney said it’s important to be mindful to maintain our loved ones’ physical needs in the hustle and bustle of the holidays.

Make sure your loved one is eating good quality food on a regular schedule. Make sure they stay hydrated while out and about in town and during busy family gatherings. Be very careful and limited with alcohol consumption. Deliberately add in more time for rest and recovery in your schedule. Set medication alarms to make sure we remember to take medicines during our activities (taking water with us is often necessary for this).

Again, it can be very helpful to have a dedicated person or group of people to watch over these needs for your loved one. If this is too big of a job for one person, designate a different coordinator for each day of the holiday, and switch throughout the celebration. 

Closing thoughts

Of course, all these suggestions assume that your loved one is going to be an active, agreeable participant in adjusting to their own needs. Unfortunately, sometimes this is just not the case.

“Cognitive change is cruel and unforgiving, and it can completely change our loved ones’ personalities and ways of doing things,” Anderson-Mooney said. “Our loved ones may no longer be capable of understanding their own changes and adapting to their own needs. Our loved ones may no longer recognize us when we visit.  We might deal with more agitation and anger, more upset, lashing out behavior. In these cases, our traditional plans just don’t make sense anymore.”

In these worse-case scenarios, Anderson-Mooney said we must adapt to a much heavier degree.

Specifically, if visits usually leave your loved one agitated and upset, it may be best to delay the holiday all together.

If visits leave your loved one confused, it may still be worth making the effort to celebrate together. Anderson-Mooney added that even if your loved one no longer recognizes you, they are very likely to recognize and understand that you are someone who loves and cares about them. They will appreciate your gesture of time and company, small gifts and comforts, favorite foods, and chatting about family photos. Spend time listening to their favorite music. Talk about their favorite memories from the past. Take the time to write down the family stories they tell before they fade away.

“This time can be a gift, even while you mourn the changes your family is experiencing,” Anderson-Mooney said.  “Give the best love and honor that you can, and know that it matters, whether or not your loved one can appreciate it.”

This essay has been factchecked by members of NAN’s Publications Committee. For more about that process, click here.

Mourning of the inanimate

in , /by

It wasn’t the first time I had migrated from one parent’s house to the other’s. Eleven miles door-to-door and a world apart. “Something was wrong” with Mom, but a diagnosis was at arm’s length. As imperative as it was to address the jarring interruption to what I had previously understood her to be, getting an answer was paralleling the first page of what was expected to be a poignant new life chapter.

I hesitated to turn the page.

Having stretched the task over several weekends, I moved my belongings into Mom’s house. I was a broke thirty-something who had spent the totality of my savings a couple years prior on a six-and-a-half-month solo road trip around the United States. It was early September 2019, and I couldn’t afford to continue paying my dad the few hundred dollars a month he was charging me for rent. The bucket list travel had been a lived-out dream I’d repeat a thousand times over if I could, but after the trip I was back to substantiating paycheck to paycheck. With pride tucked between my legs, I went from low rent to no rent, accepting a humbling perk of familial cohabitation as an adult.

I recall placing my camera on a rocking chair in the front room of her house, a temporary placement among the boxes of knickknacks and clothes. It sat tucked inside an innocuous black bag, unbecoming of its gravity. My out-of-date smart phone had sufficed for documenting worldwide travels for years, but I had recently upgraded to point-and-shoot. To this day I am proud of all I had captured on the phone, but there’s an ego feeding self-assurance to finally owning “real” photography equipment.

Months after my previous birthday Dad casually offered to give me money toward a camera. (Originally, he opted to fund a hitch for my car, but after I did not take him up on the original offer, he concluded there was little interest in that specific generosity.) But I sure did perk up when he came across a springtime Target ad for a Canon Rebel bundle, a suitable starter kit for an amateur photographer looking to upgrade her equipment. Forty-five minutes after the proposal I was standing in the electronics department of the store waiting for the employee to unlock the glass display case. The heart palpitations confirmed that this was the gift for which I had been longing. Dad graciously understood the impact of the pivot when I returned home with the box clutched tightly in my hands and a giddy, beaming smile as matching accessory.

Mom always fed my hunger for creativity. With an appropriately supportive “Oh honey, that’s amazing” (or something of the like), she never failed to recognize each project regardless of its juvenile-handed craftmanship. My interest would wax and wane with varying mediums, but a few became woven into my being. I requested trips to the local craft or fabric store to garner beads for jewelry making, stamps and thick, velvety paper for homemade cards. These treasures would join the hoarded bins of paints and markers, journals, and dress-up clothes. Menus were made for special occasion meals that I crafted for hours; a home-room newspaper was fashioned with peers. To my dismay she riffled through bedroom drawers to read emotive poems about boys or depression, and embarrassingly, angsty notes directed toward her. It wasn’t lost to me that any good mother ought to express encouragement in their child’s interests, an obligation of love. As I got older, I understood this silent agreement between us that I would create and she would “Oooo” and “Ahhh,”but my ego luxuriated in it regardless.

In adulthood I narrowed my artistic efforts to writing, drawing, cooking, and later, photography. Honing them was continuous and boundless, a new-to-me definition of infinity. There was always more to make, lenses of perspectives to try on, skills to learn. Enter Alzheimer’s. Even as Mom faded, she was there for all of it. The more she leaned out of reality, the more I realized how precious her gift of support was. It’s intangible in the traditional sense, but it’s there in every production of my mind’s eye.

As of that move-in day, most of the photographs remained on the camera’s memory card. There was no urgency to upload and edit them at will. Their existence remained in the suspension of a plastic chip the size of a thumb, tucked in a cavity of the camera, hidden from the bright light of the living room by the protective barrier of a travel bag. A non-descript item amongst many, waiting to be unpacked into new shelves and drawers and wicker baskets for the guise of organization.

These were the tokens of the camera that I collected with gumption: Inky Joshua trees backlit with sorbet desert skies. Swirly rock striations of rust and cream, bookmarks of time. Brick walls swathed with city smog, fingertips, and speckled blood of unnamed revolutionaries assassinated by defunct reasonings. A sunrise more volcanic than its conical counterpart, igniting a landscape monument in the crook of its arch only in the brevity of time when light first reached it each morning. Tufa formations and earthy tears pooled into a lake more alien than Mars.

It wasn’t until weeks later, when I went to grab the camera to document an afternoon hike, that I realized it was missing. The longer it was out of sight, the more panic overtook me. Subsequently there were several occasions of feverishly looking in every space of the house to try and locate it. No, it wasn’t in any of the closets. Nor was it in the last of the moving boxes or under any furniture. The garage hadn’t gobbled it up.

Where the hell was it?

As revelations often are, a thought was born with certitude out of the nothingness of an ordinary day.

Again, I recalled bringing it into the house and gingerly setting it on the rocking chair to prevent it from getting jostled or knocked over. But this time I also remembered how Mom wanted to help with the move. In those earlier years she still maintained a compulsion to clean and organize, so she volunteered to pick up boxes and other nondescript packing materials as I unpacked. The human-sized black trash bag she held in my memory screamed at me. This was the first time I considered that Mom threw the camera—bag and all—away.

Was this truth? Or was I succumbing to the human urge to place blame on others for my own misplaced possessions? I didn’t care. The likelihood of the explanation seemed too obvious. I let the weepy, exasperated self-pity and tear-soaked hyperventilation take over. A still frame of the camera sitting mournfully in the garbage bin outside overtook my sanity. Of all the things she could have thrown away accidentally, why did it have to be that?

I can’t say for certain if I confronted her, but I have a feeling that I did. Not the shiniest reactionary decision to burden or shame my most consistent supporter when it was the disease, not her, that disposed of the camera.

Four years later, when I found mom a placement in a memory care facility and began moving out, the overwhelming suspicion was all but confirmed. Aside from the decluttering I had done during the pandemic and multiple wildfire evacuations, there were months upon months of preparation for the inevitable next step. The house needed to be renovated and staged to be sold. The profits were the only way to pay for Mom’s expenses as a soon-to-be resident of a place where others would care for her. I was both being set free from caregiving and saying goodbye to a version of us that we’d never meet again.

In my last hours at the house, I breathed in the bareness of each room. There was nowhere for a camera to hide. No corner or nook unexamined. Every possible resting place had been eliminated. It stung less than before, but I mourned it along with the swelling of so many goodbyes. Admittedly, that specific anguish had dulled when a stranger had gifted me the exact same camera bundle sometime in the last months before moving.

I had come across an online posting in a neighborhood group. The owner of the camera wanted to give it to someone who would use it with much more gumption and appreciation than she had. Close to a hundred people left comments of varying degrees, asking to procure the unusually high-value offering. My own comment thanked the woman for her generous act of kindness and briefly explained that my Alzheimer’s ridden mother had accidentally thrown mine away. It was the truth, but still felt slightly sticky to expose the transgression. I was sure that the camera would find its way into someone else’s hands, anyway. I had never seen so many responses to a post before.

Instead, this wayward camera became mine.

There is still disbelief when I see the device and its pack nonchalantly sitting in the room of my new home. It’s like the space in a book between the end of the last chapter and the beginning of the next. Definitive. Small, yet vast with meaning despite being nothingness sandwiched between the profound.

Sometimes I speak a quiet offering of gratitude to the woman, but also for my mother. It felt like everything had come full circle. Surely, somehow, Mom had a hand in that. 

For additional information about processing grief and loss as Alzheimer’s disease progresses, visit this Alzheimer’s Association page on the subject. Another good resource for families: The 36-Hour Day.

This essay has been factchecked by members of NAN’s Publications Committee. For more about that process, click here.

Lauren Ahlgren is a writer and swim instructor in Bend, Oregon.

What to consider after a loved one receives a diagnosis of dementia

in , /by

The patients and families in my clinic are often referred to me for this key question:  “Do I have dementia?”  

Family members may sense that something has changed for their loved one. Patients may know something is different but may not be fully aware of the problems and changes they are experiencing. This can lead to a great deal of fear around the potential diagnosis and what the future may hold after that diagnosis. It also highlights the importance of thorough evaluation and clear communication around assessment findings. Dementia is a familiar term to most people, even though it is often used incorrectly. The word, “dementia,” refers to the depth and breadth of cognitive and practical problems.  However, the term “dementia” does not speak to what is causing those problems. The underlying cause of dementia can be any number of things, including Alzheimer’s, Parkinson’s, stroke, and many more. Despite the cause, informing someone that they have signs of dementia—of any kind—is often heartbreaking news for patients and their families. It’s also difficult for the doctors who deliver that news.  This is why many doctors hesitate to share the diagnosis or defer the responsibility to specialists.

This is where I come in as a neuropsychologist. Breaking that news is one of the single most difficult things that I do in my clinic, and yet I do it often. In helping patients and families digest this news, I’ve come to see it as an honor to walk patients and families through the practical first steps of being introduced to the realities of the diagnosis.

To help make this happen, I ask families to prepare for the worst-case scenario and live for the best case.

I encourage families to prepare for problems ahead of time instead of responding when the problems are too big to ignore.  Emotions can take over and cloud judgment too much in those times.  First, I ask families to think through their loved one’s practical needs.  How much practical trouble is the patient having in their day-to-day life?  What help do they need now?  How can they prepare for, if, or when that trouble gets worse?  I ask them to be familiar with their loved one’s daily routine and their usual needs.  A big part of this is familiarizing themselves with their loved one’s medication regimen and financial situation. It’s ideal if families can be comfortable with these needs before their loved one needs help, but it’s never too late to start. 

I also ask families to update their home emergency plan, to make sure their loved one is safe in case of a house fire or natural disaster, for instance.  These situations can be doubly hard for a person with any kind of cognitive problem. 

Some of the questions to think about are harder.  I ask them to think long and hard about driving—how much longer can the person who has received a dementia diagnosis keep driving safely?  The answer is different for every person. The gold-standard driving skills test is a practical behind-the-wheel test with an occupational therapist who is specially trained to examine driving skills.  Neuropsychological evaluation can also assess some skills that are important to driving, such as how fast the brain can process information and how easy it is to juggle attention. Sometimes, scaling back driving to good weather conditions, within a few miles from home, with little to no distraction in the car might be the most appropriate choice, and sometimes, no driving altogether is the better option.

I ask families to consider their plans for their loved one’s long-term care.  When will they need to ask for help in caring for their loved one?  What might that help look like?  For different families, and at different times for the same family, it might mean help from friends and neighbors, scheduled respite care from a professional caregiver, live-in help, or nursing home placement.  Considering all options ahead of time can be a great comfort when and if a patient needs more hands-on care than their loved ones can give alone.  The financial aspect is also important to consider. Do they have insurance policies or benefits for long-term care?  They may also want to contact an expert in elder law for advice on how to protect their loved one’s assets if their condition worsens and long-term nursing facility care is needed. 

I ask families to make sure that their loved one has Advance Directives for Health Care (this is also known as a Living Will) and Power of Attorney for health care, legal decisions, and finances.  Many states, including my home state of Kentucky, have premade documents to cover the basics of a living will and health care power of attorney.  Families should be aware that power of attorney for health care does not apply to finances and legal issues, so asking a trusted attorney for guidance on those issues can be important.  Once the documents are done, keeping multiple copies of them in a safe place with other important papers, as well as on file at the patient’s primary doctor’s office, can give a lot of peace of mind.

Beyond these important issues, I ask loved ones to think about what I call The Big 5.  These are five key parts of brain health for anyone and need special attention for families dealing with a diagnosis like dementia. (Click here to download a PDF of the infographic below.)

An infographic about five important issues to consider after a loved one has been diagnosed with dementia.

Head injury prevention

Falls are bad for older adults in just about any condition; for those with dementia, they can speed up the onset.  When elders fall and hit their heads, it can cause bleeding on the brain.  I advise family members of my patients to always protect the patient’s head. This can be as simple as making sure pathways are clear and shoes fit well.  Be aware of little pets that love to be underfoot.  Put bars in the bathroom and on the stairs.  Make sure area rugs don’t curl up and cause hazards.  Sometimes, an Occupational Therapist can do an in-home evaluation to give pointers for safety. 

Heart health

In general:  Anything that’s good for your heart is good for your brain.  Your heart is pumping about 20 percent of your blood straight to your brain every time your heart beats—a large closed-loop system of pipes connects them. If something goes wrong with a patient’s heart, it increases the chances that something can go wrong upstream in the brain. This means it’s important to stay on top of things like blood pressure and sleep apnea. It also means following a heart healthy diet, like the MIND diet, avoiding processed foods, and getting reasonable, regular exercise.  One of the most important keys to heart health is well-known:  No smoking!  Quitting smoking, or never starting, is one of the single most important things we can do for our brain health and for the rest of our bodies. 

Sleep

I tell my patients to treat sleep like it is sacred.  When we sleep, our brains go through their regularly scheduled maintenance programs. It’s like taking your car in for an oil change and transmission service —especially during REM sleep and deep sleep.  We all need this sleep, but people with dementia might need it even more.  Some new research says that deep sleep might help slow down the progress of the disease.  This shows why sleep apnea can be such a problem.  Sleep apnea disturbs our sleep cycles, sometime keeping us from getting enough REM and deep sleep.  It also rations the oxygen in our brains, which can make thinking problems worse.  Sleep apnea can also increase the chances of heart attack and stroke, which can damage the brain even more.  If you have sleep apnea, good treatment is important. 

Cognitive activity

Especially as we age, we must keep thinking and using our brains.  Our brains are made to learn, especially in the real world, engaging in the activities of real life.  Read the book. Visit a new place. Try a new food. Learn a new hobby.  Meet some new people. Our brains love all that stuff. Sudoku and crossword puzzles are great, so long as they are engaging for someone’s brain.

Stay Connected

There are all kinds of research proving that loneliness is toxic to our physical bodies. Isolation is not good for us. I always tell loved ones and family members of my patients: Now is the time to double down on relationship.  Check in on them, make sure they have every opportunity to connect with friends and family to maintain their important relationships and connections.  This is especially important if a patient cannot drive:  Those folks too often get cut off from the outside world.  While doing this, it’s also important to make sure the patient doesn’t get overwhelmed.  Because of this, families might need to rethink how best to offer those connections.  They might need to rethink how to manage family traditions, like big holiday dinners.  Again, talking about these issues ahead of time can help immensely. 

Remember when I said that I want my patients to live joyfully, no matter their diagnosis? I know none of this sounds all that joyful.  But remember, I want to help these families prepare for the worst and live for the best.  Because of this, I also ask them to go have fun.  Especially if the diagnosis comes early, I tell them: Take the trip, do the experience, get after it. If there is anything you’ve dreamed about doing, do it.  Spend time together and love one another with intention and dedication.  Do this, and some of your best memories may be ahead of you, not behind you. 

Click here to download a PDF of The Big 5 infographic.

For more information about elder law, check out the National Elder Law Foundation and the National Academy of Elder Law Attorneys.