Terminology:

Care partner, caregiver, care receiver: These terms imply roles that may or may not apply to how you see yourself. Some people see “care partner” as a neutral term that suggests we are all both givers and receivers, and to some extent that is true. Nevertheless, the reality is that in many situations, it’s a distinctly unequal partnership where the greater giver finds it hard to call it a partnership. Other English-speaking countries use the term “carer” in place of caregiver, which I like because really, it can be applied to anyone who cares for/about anyone in any of the above roles.

Dementia: This is the umbrella term for any progressive disorder that causes loss of multiple brain functions. People have a tendency to think it is solely about memory loss and a general confusion, but it can include many other symptoms, such as deficits in judgment and reasoning, communication/language difficulties, disorientation, losses related to time and numbers, and much more. The four most common forms of dementia are Alzheimer’s disease, Dementia with Lewy Bodies (DLB), Vascular dementia, and Frontotemporal dementia, but there are many more, including variations of these.  

A few sample words I reject entirely:

Behaviors (usually accompanied by the word “difficult”): When people can no longer verbally express their needs due, for example, to dementia or a stroke, they express them through their behavior or their demeanor, so “behaviors” are non-verbal expressions. It’s up to us to decipher the meaning of those expressions.

Suffer: This is a word I reject simply because it’s a downer and implies victimhood that serves no useful purpose, especially when used to describe the experience of others: “He suffers from ____.” It negates the joy that is still possible in the midst of dire circumstances.

Sundowning: This is a term I have railed against for decades. If sundowning refers to fading late in the afternoon after a long day when “doing our best” has taken a toll, then we ALL sundown. We’re tired, maybe crabby, and we crave some peace and quiet. It is not bizarre behavior that deserves a demeaning label.

Wandering: This is another term generally used to describe what is seen as purposeless behavior. As I explain more thoroughly in my book, Alzheimer’s Basic Caregiving, there are many logical reasons a person may be walking about, even if he can’t verbally express them. C’mon, don’t try to tell me you have never walked into a room and forgotten why. On the other hand, what if we called it “going for a stroll”? Doesn’t that sound more positive?

Resources

Attitude matters. My chosen superpower is cheerfulness, and I advocate adapting it to your own life. A positive attitude doesn’t deny the awfulness of any given disease, but it approaches the journey with curiosity, an open mind, and a willingness to go with the flow. This website has a strong emphasis on keeping your sense of humor. I cannot tell jokes, and I’m not usually successful in my attempts to be funny, yet I try to bring a cheery can-do attitude to each day. You can, too.

I’m not happy; I’m cheerful. There’s a difference.
A happy woman has no cares at all.
A cheerful woman has cares, but has learned how to deal with them.
~ Beverly Sills

But you also need knowledge. I applaud your loving heart and your determination to do your best in whatever role you are playing, but you also need to know what to do. The resources below were chosen to give you quality guidelines, while acknowledging you need material that is easy to absorb and take action on. None of them will overwhelm you, and I hope you find that they all encourage a can-do attitude.

• I have written two upbeat, practical books on caring for someone living with dementia that provide family and professional carers palatable and compassionate advice and answers that can be instantly put to use. Both are available in print, audio, and Kindle formats. The main topics covered in Alzheimer’s Basic Caregiving are common forms of dementia, patterns of progression, the logic behind behavioral expressions, and effective communication. Its companion book, Activities of Daily Living, covers the daily issues of dressing, bathing, grooming, continence care, nutrition and hydration. Learn more here.
• Two of the articles currently on this site directly address issues related to dementia care: “Improv Principles Improve Communication, Too,” and “Communication: 2 Simple Rules.” One other is aimed at helping to encourage people to exercise by making it more interesting: “Add Beauty to Exercise.” Access them all here. 
• You will find additional resources by going to “Products and Resources” on the menu bar and lots of activity materials on my other two primary websites, WiserNow.com and CreatingDelight.com.

All of the above will inform your caregiving for someone living with dementia, but a cheerful attitude can only be maintained when you eat well, sleep well, and take care of your own needs. An old Irish proverb says, “A good laugh and a long sleep are the best cures.” Be good to yourself, and check out the humor resources.

Laughter need not be cut out of anything, since it improves everything. ~ James Thurber

There is a tendency to see humor as fluff, something literally not to be taken seriously, but humor is a survival tool. I know no one who has not said after coming out on the other side of a tragedy, “I couldn’t have survived without my sense of humor.”

That’s not to say that caregiving is a barrel of laughs, but the reality is that most laughter is triggered not by jokes, but by our shared humanity, often our shared misery in a frustrating situation. Laughter interrupts the panic cycle of an illness or a situation. When we laugh in distress, it lightens our perspective, even if only for a moment. That flash of light provides a flash of hope that we can make it through whatever we’re facing — especially when we stay connected with others and face it together.

Many physical and mental benefits come from keeping a sense of humor, and amazingly, even most people living with dementia retain their ability to laugh and smile, almost until they die. Some are even able to make remarkable jokes.

A woman I have long admired who was the co-founder of a day center for people living with dementia was standing next to a client one day watching the squirrels playing outside the window and remarked on how cute they were. The client said, “We’re pretty squirrely in here, too, and nobody thinks we’re cute.” That’s funny, insightful, and a reminder to keep looking for what’s fun.

How do you find it? Here are a few suggestions:

• My parents never went to bed at night without watching Johnny Carson on “The Tonight Show,” which means they always went to bed with a smile on their faces. It’s a wise practice that sets the mood for a good night’s sleep. You can still get DVDs of the funniest moments of his shows, and it only takes 10 -15 minutes of watching for a positive effect. There are also endless short YouTube videos and other sources of instantly available cheerful ways to end the day.
• Start the day with a smile by signing up via email for a joke-of-the-day or a cartoon-of-the-day. A Google search will reveal multiple choices.
• Carers (givers and receivers) can also use cartoons for 5-minute reset breaks throughout the day. I’m especially fond of cartoonist Dave Coverly, whose single-panel Speed Bump cartoons have proven to be just what the doctor should have ordered. I have given his book Speed Bump, a 25th Anniversary Collection to multiple people with great success, because the gentle humor of its 200 cartoons can be read over and over again without losing their fun. (He also has other books on dogs, cats, and the medical system.) His daily cartoon appears in 400 newspapers, including The Washington Post and Los Angeles Times. You can see hundreds of his cartoons by Googling his name and “images.” Or you can go here to sign up to receive a daily text of one of his cartoons at a cost of about $3/month.
• My friend Allen Klein is the author of dozens of uplifting books and also produces a free Mid-Month Mirth Memo on the 15^th of every month. Sign up here. He has also written a bunch of articles on humor to keep your spirits up.
• My weekly e-newsletter, Wait Lifters – Uplifting content for every kind of downtime is another source of good cheer. 
• I have also written a lot more on this topic, including how humor makes us benevolent. Read it here. 

Bottom line: Funny sights and funny words are everywhere. Watch for them.