The Alzheimer's Digest: Dementia Caregivers

Living with Alzheimer's disease is a challenge for anyone. It's difficult to remember things, make decisions, and find your way around the way you used to. It can be frustrating a good deal of the time, but there are good days and bad days. Here are some helpful tips and things you can do to make things easier for yourself -- to make things feel a bit more normal again.

How Do I Cope With My Memory Problems?

To help cope with memory problems:

Always keep a book with you to record important information, phone numbers, names, ideas you have, appointments, your address, and directions to your home.
Place sticky notes around the house when you need to remember things.
Label cupboards and drawers with words or pictures that describe their contents.
Place important phone numbers in large print next to the phone.
Ask a friend or family member to call and remind you of important things that you need to do in the day, like meal times, medication times, and appointments.
Use a calendar to keep track of time and to remember important dates.
Use photos of people you see often labeled with their names.
Keep track of phone messages by using an answering machine.

What's the Best Way to Plan the Day?

In planning your day:

Find things to do that you enjoy and are able to do safely on your own.
It will be easier to accomplish tasks during the times of the day when you feel best.
Allow yourself the time to do the things you need to do, and don't feel rushed or let other people rush you.
If something gets too difficult, take a break.
Ask for help if you need it.

How Do I Avoid Getting Lost?

To keep from getting lost:

Ask someone to go with you when you go out.
Ask for help if you need it and explain that you have a memory problem.
Always take directions for where you're going with you.

What Will Make Communicating Easier?

Communicating with others will be easier if you:

Always take your time, and don't feel rushed.
If you need to, ask the person you're speaking with to repeat what he/she is saying or to speak slowly if you do not understand.
Avoid distracting noises, and find a quiet place to talk.

What About Driving?

Driving can be of particular concern for Alzheimer's patients. Here are some things to consider:

Have someone else drive you where you need to go.
If you tend to get lost or confused easily, consider alternative modes of transportation.
Drive only in areas that are familiar to you.
Contact organizations like the Alzheimer's Association to learn what local transportation services are available.
The Department of Motor Vehicles will assess your driving skills if you're not sure whether you should drive.
At some point, it may no longer be safe for you to drive.

How Do I Take Care of Myself at Home?

To make sure you are well taken care of at home, put some of these measures into place early so they become routine:

Local Alzheimer organizations or your doctor will be able to tell you how to get help with things like shopping, housekeeping, meals (including home-delivered meals), and transportation.
Ask a neighbor you trust to keep a set of house keys.
Ask a friend or family member to help you to organize your closets and drawers to make it easier for you to find things.
Ask a family member to check things out around the house, such as electrical appliances, mail, and perishable food items.
Keep a list of important and emergency numbers by the phone.
Have family, friends, or a community service program call or visit daily to ensure that everything is all right.
Ask someone to check your smoke alarm regularly.

How Do I Maintain My Responsibilities?

Arrange for direct deposit of checks, such as your retirement pension or Social Security benefits.
Inform your bank if you have difficulty keeping track of your accounts and record keeping. They may provide special services for people who have Alzheimer's.

It is important to realize that at some point, it will become too difficult or dangerous for you to live by yourself. But, in the earliest stages of the disease, many people do manage on their own -- with support and help from friends, family, and community programs and with simple adjustments and safety practices in place.

Dementia Signage for the Home

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Reminder Notes & Memory Aids

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Caregiver Lynette Wilson Juul is inspiring the next generation of caregivers.

Lynette Wilson Juul submitted a story for Finding the JOY in Caregiving, and it was so inspiring I wanted to do a feature of her and her son, Peter.

Here is the story that touched me. I hope it will also touch you.

I sometimes wonder if there is a genetic predisposition to caregiving.

I have been a caregiver for many years, and have had the privilege of working in diverse situations, including at-home care for the elderly, work with the mentally ill in a group home, and case management for the developmentally disabled.

At the same time, I’ve also been raising a sixteen-year-old son with an Autism Spectrum Disorder. Although extremely challenging at times, he has been my pride and JOY, full of quirkiness, quick-wit, and, as I recently discovered, deep compassion.

Over the years, I’ve worked at jobs where I could include him in certain activities. Visits to group homes on holidays and special occasions. Participation in recreational activities, like trips to the movies, mall, or even a nearby aquarium. He has even gone on vacations with some of the individuals I’ve served, and in the process, developed close relationships with their family members.

He has observed his mom being a caregiver not only for him, but also for others, during his entire life.

Last year, my son made the decision to move 3,000 miles away to assist his father in

caring for his aging grandparents. Sadly, his grandmother passed away this past spring due to medical reasons, leaving behind his grandfather, whose memory is steadily deteriorating due to dementia.

Yet right in the midst of this difficult situation, I have seen a truly amazing and incredibly inspiring transformation take place in my often self-absorbed teenager during this past year, and it has been an absolute JOY to witness.

In spite of the tremendous challenges of caring for an aging loved one, my son has managed to form a strong and special bond with his Grandfather, one that did not exist before. Like a duck to water, my son slid right into the role of caring for his “Far Far” (an affectionate Danish term for Grandfather).

In our frequent phone conversations, my son described to me how he helped his Grandfather get up, dressed, and on the bus to the daycare program. He detailed how he organized his medications for the week, prepared evening meals for him, and most importantly, how he helped establish a regular routine for his “Far Far” filled with quality companionship.

And even though his Grandfather slowly continues to disconnect from the familiar world he once knew, my son, along with the presence of a loyal and loving dog, has managed to maintain a meaningful relationship with him.

I asked him one night how he learned to take such good care of his Grandfather.

He answered quite quickly, as if the answer should be obvious. “I learned it from watching you, Mommy.”

I could not have been more proud of my son at that moment… or more grateful to have chosen caregiving as a vocation.

She adds, “All I’ve ever wanted to do was touch other lives in a meaningful way, and caregiving has allowed me this pleasure.”

Click on the link for more information about Lynette Wilson Juul.

Lynette may have a point: There may be a genetic link among caregivers.