Coping: overcoming frustrations
More on CopingTo learn more about coping with an Alzheimer's diagnosis, visit The Alzheimer's Association website.
If you are a caregiver, or you have been recently diagnosed with Alzheimer’s, it’s important to give yourself permission to feel sadness, loss and grief. It's also important to try concentrating on what is still possible and the time that you have. Above all, get the support that you need.
Currently, there is no treatment that will stop Alzheimer’s, but there are things that you can focus on to help deal with, and possibly slow down, the progression of the disease. All loved ones touched by Alzheimer’s disease will face stress caused by the disease.
If You Have Been Diagnosed With Alzheimer’s
You may be relieved to learn that there is a physical reason for the changes and difficulties that you have been experiencing. If you are in the early stages, this is the time to acknowledge your situation and make the most of your time ahead with family, friends and loved ones.
Staying as physically and socially active as possible will be helpful—and may even slow down the progression of the disease. Exercise is critically important and new research in this area emphasizes the importance of regular, aerobic movement. Try to make it as enjoyable as possible and schedule a walk with others or join a group fitness class, if possible.
You may also choose to be involved in Alzheimer’s advocacy. People with Alzheimer’s are more involved in their own care than ever before. Be proactive with your health, learn about treatment options, and make informed decisions with your family or other caregivers on how you would like to be cared for in the late stages of the disease.
There is also greater acceptance and recognition of the disease. The stigma attached to an Alzheimer's diagnosis is gradually diminishing. More people with Alzheimer's are sharing their experiences and playing an active role in their treatment in the early stages of the disease.
Finally, try to be easy on yourself. Being frustrated and fearful about your disease is perfectly normal. It is a basic human reaction to fear memory loss. As David Shenk, author of The Forgetting, stated, “memories are who we are.” Acknowledge your loss, revel in what you can enjoy now and talk with those close to you about your feelings.
If Someone You Love Has Been Diagnosed with Alzheimer’s
Take Time for Yourself
I remember my father trying to help a puppy that was hit by a car. The poor thing bit him. Instead of being angry at the puppy, he said it wasn't the dog's fault. It was in so much pain. I feel like that sometimes - filled with so much pain that I don't recognize a kind hand. — Sue Matthews Petrovski , "A Return Journey"
In an airplane emergency, you're always told to secure your own oxygen mask before helping anyone else. The same goes for supporting someone with Alzheimer's. Make sure you're okay before jumping in to help or extending yourself so far that you forget to care for your own needs. You'll be a much more effective source of care and support.
Respite Care and Alone Time
Many asissted living facilities or adult day services offer temporary care. It's important to take time to recharge your batteries while caring for someone with Alzheimer's. If you are the primary caregiver, there are benefits for adult day services for both you and the person you are caring for. You also may want to explore a federal program for families with a relative who attends a day service and spends evenings at home. Visit The All-Inclusive Care for the Elderly (PACE) Website for more information.
Find Something to Anticipate Every Day
Many times, I would lay in bed with mama. After a long day, we would be able to settle in and just hug each other... — Mitzi, Wisconsin
There will be rough days with Alzheimer's or caring for someone with the disease, but if you can ensure that every day has at least one bright spot, you might feel less overwhelmed. Whether it's a quiet moment you share in the morning or time you spend together playing with a dog, anticipating the good times might make the difficult times more manageable.
Go with the Flow
One night, as the closing [evening news] theme music swelled and the inevitable waving began, I looked over at Grandma. She was waving back at the television. She looked at me and ordered, "Come on, already. Wave. Don't be rude." I waved.
— Kristin, Minnesota
People with Alzheimer's may exhibit strange, sometimes irrational, behaviors because of changes in their brains. Accept that these personality changes are the disease, not the person. When someone with Alzheimer's is confused or just dead-wrong about something, don't bother correcting him or her. If your mom believes you're her sister, let her think so. Convincing her otherwise will only cause disappointment and confusion. For caregivers, this is often difficult to do, so take a deep breath give yourself a break.
Expect the Unexpected
On the MMSE test today [my wife] could not recall the word for pencil... Strangely enough, to me at least, is that she remembers to say "God Bless You" immediately after I sneeze." — John, Maryland
Alzheimer's progresses differently for everyone. One person may experience hallucinations, while another never does. Certain symptoms of Alzheimer's are pervasive, and understanding them can help you understand what someone with Alzheimer's is going through. But from day to day, you'll need to roll with the punches. Some days will be seemingly normal, others will present major challenges.
Find a Common Bond
More than once I have commiserated with her, "It's a tough time, sweetheart, isn't it?" She has agreed, "A tough time." It is as close to a complaint as I have ever heard her come. "A tough time." — Ray Ashford, And We Fly Away
Even if you feel like you're losing your most intimate relationship, there's probably still one thing the two of you have in common. Chances are, you're both furious at the disease. You're confused, afraid, frustrated, embarrassed, exhausted, overwhelmed, lonely and grief-stricken. In many ways, you're both in the same boat, and it may help to remember that you're in this together.
Recognition Is More Than a Name
"My grandmother, who is in the nursing home [with advanced Alzheimer's] had an obvious ah-ha moment when I visited her. She introduced the staff to me as 'my helpers' and proudly pointed to me and said, 'And, this is my family.' She always used those terms, and she was never wrong." — Lisa, North Carolina
The recognition of names and faces comes and goes during Alzheimer's and usually depends on which stage of the disease someone is facing. It's important to know that recognition isn't a measurement of how important you are to the person. Recognition depends on which neuronal connections are still working. Forgetting is a brain malfunction, not a personal judgment. When someone you love forgets your name, make the most of the shared relationship that remains - love, understanding and compassion. All of these will help you remain important to the person regardless of whether your name is invoked.
For Caregivers: Know that There is Life After Alzheimer's
Now when I think of Mom, I don't think of her when she was sick but of times in the past when she was well. The mind is wonderful in helping us remember the good times. — Pam, Alzheimer's List
Many caregivers become so focused on their role, that they have a difficult time and experience guilt when their loved one is gone. A slow and silent killer, Alzheimer’s patients and their caregivers usually face a long period of dependency on each other. When it’s time to say a final goodbye, don't isolate yourself. There are plenty of people who are ready and willing to talk with you.
For family caregivers, learn more by visiting The National Family Caregivers Association.
For Younger People
You may be upset, angry or scared when you hear that a loved one has been diagnosed with Alzheimer’s disease. It’s important to know that the person you have come to know may change and that their behaviors may slowly be influenced by the disease.
If you are confused or scared, be assured that your feelings are normal. People with Alzheimer’s disease may start to act different or may not even recognize you. This is not because they don’t love you any longer—it’s because the disease is controlling parts of their brain that influence their memory or behavior. Talk with an adult about your feelings. Do research on Alzheimer’s. Most important, focus on the time that you have with your loved one.