Alzheimer's is a disease that can strike anyone, anywhere. It hits the famous and not-so-famous; the wealthy and the poor; and people of all races, creeds, and political persuasions. The disease is not only a challenge for the patient. It also challenges the families and friends of those who are afflicted.
Because there's currently no cure, it can be tempting for loved ones to deny the dementia and other symptoms and to attempt to maintain an "ordinary" life for as long as possible. However, getting past denial and facing the disease provides huge benefits for everyone: better medical care, an improved quality of life for the patient and family members, better caretaking of the patient, better support for loved ones, and increased awareness of how to create closeness and, ultimately, closure. Following are four guidelines for the journey of dealing with Alzheimer's when it strikes someone you love:
1. Inform yourself. Seek a deep level of knowledge and understanding as early on as possible, and stay on top of the research. This will help you (and other family members) fully grasp the mental and physical implications for the Alzheimer's patient, and you will better understand the challenges and opportunities ahead of you. You will have the tools and knowledge you need to recognize what will be the new normal for the patient: the agitation, the paranoia, the phobias, and the memory loss. Knowing what is normal at different stages and what to expect as the disease progresses will help assuage any feelings of guilt that may surface and provide much-needed emotional comfort and assurance as you move forward.
2. Find the best medical help. Many older people have had the same internist or general practitioner for 20 or 30 years. They've developed trust and familiarity with that person and commonly resist turning their care over to a stranger. While that's natural, it's also true that a specialist -- a geriatrician, neurologist with a specialty in memory loss, and other doctors with specialties in aging -- can provide a much higher level of care. They understand the many forms and diagnoses of memory loss, including Alzheimer's and Parkinson's, the challenges of nutrition, and the range of treatments and protocols needed to deal with the loss of abilities such as speech and swallowing. Finding the right physician can extend both the quantity and the quality of the patient's life. It's rarely too soon to make the transition to the right specialist.
3. Live in your loved one's new reality instead of fighting it. When a person has Alzheimer's, his or her brain misfires. Dementia patients experience things differently, and it's tempting to argue with them. However, that serves no useful purpose. In fact, all "reality therapy" does is agitate the person. So instead of insisting that your loved one face reality, enter your family member's reality. Give him or her time to reconnect with you, and avoid confrontation. This can help minimize the agitation that accompanies memory lapses.
4. Celebrate. Although during the late phases of the disease, traditional ways of honoring a person can be difficult or even impossible, there are other ways to celebrate. You can have a family gathering and reminisce, and assume that the patient is listening and participating. You can also share the outdoors. Too often, people who suffer from Alzheimer's are confined to the halls of their community or their rooms. You can connect through music, which physiologically changes your body and attitude. And, believe it or not, you can celebrate by eating junk food -- the more calories, the better! Enjoying the food is far more important than its nutritional value. Most of all, give the gift of touch, which is a primal need we all share. Touching can provide comfort, care, understanding, and stimulation, so celebrate the moment with a hug.
Finally, cut yourself some slack. Even the most giving, skilled, and loving family caregiver can get overwhelmed rather quickly. And not every family member is hard-wired to be a caregiver. Lighten up on yourself, and keep your expectations reasonable. Make sure you're getting enough sleep and taking care of your own needs. You don't have to feel guilty for recognizing that you are human and have your own needs. The only way you can help the Alzheimer's patient is if you take care of yourself first. You don't have to be on the go and accomplish something every moment of the day. Sometimes, it's okay to just sit.
By Dwayne J. Clark, author of My Mother, My Son. Visit him online at www.mymothermyson.com.
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