If you have a loved one who has been diagnosed with Alzheimer’s, and you’re reading this book to learn more about the condition, you are already beginning to assume a role in caregiving. Taking care of a person with Alzheimer’s Disease is unlike caring for someone with any other illness, and your roles and responsibilities will be many, including the selection of medical professionals to care for the person with Alzheimer’s.
Early on, your day-to-day roles may be minimal, possibly even familiar. But have no doubt: As the disease progresses, and the patient’s condition worsens, your duties will grow. Eventually, when the responsibilities become too overwhelming, you will face the difficult decision of placing your loved one into an assisted living facility or a nursing home.
While it’s virtually impossible to outline what every caregiver should do, there are some general guidelines that caregivers should know. In The 36-Hour Day, authors Nancy L. Mace and Peter V. Rabins offer some general suggestions for caregivers of Alzheimer’s patients:
• Be informed. The more the caregiver knows about Alzheimer’s, the better equipped she is to cope with the challenges and demands presented by the patient.
• Share your concerns with the patient. When the patient is still in the early stages of the disease, you can discuss your concerns with him and try to jointly manage problems. It is also an opportunity to share your fears, worries, and grief. Try to solve your most frustrating problems one at a time. Experts say the day-to-day tasks are often the most difficult and challenging. These might include getting your loved one to take a bath, or getting through the preparation, eating, and cleanup of a meal. Rather than try to solve all the problems at once, focus on one thing you can change to make life easier.
•Get enough rest. A tired caregiver is a frustrated caregiver who has litde patience and energy for taking care of another person. When you’re tired, you are less able to tolerate irritating behaviors. That’s why it’s important to devise strategies to get breaks from your caregiving responsibilities and to get enough sleep.
•Use common sense and imagination. As we mentioned before, the job of caregiver cannot be summarized in a manual or guidebook. Caregiving means learning to adapt to all the changes in your loved one. Ask yourself whether certain tasks are still necessary. Look for new ways to get around a problem. Make allowances for your loved one’s new quirks and idiosyncracies, especially if they cause no harm. Maintain a sense of humor. Holding on to the ability to laugh is critical as you embark on the task of caregiving. Although you may frequently feel angry, sad, or frustrated, there will be moments of laughter. Seize them. And keep in mind that the person who has Alzheimer’s Disease also needs to laugh, too.
• Try to establish an environment that allows as much freedom, as possible but also offers the structure that confused people need. Now is not the time to start new routines or to rearrange the furniture. The person with Alzheimer’s Disease will want regular, predictable, and simple routines for all his activities, including meals, medication, exercise, and bedtime. He also needs to live in an environment that is familiar, reliable, and simple. So do away with clutter, and keep things as they are as much as you can.
• Remember to talk to the confused person. Don’t talk about him in front of other people. Instead, make sure to address him in a calm and gentle manner. Let him decide as much as possible, and try to explain what you’re doing and why.
• Have an ID bracelet or necklace made for the person. Early on, get him in the habit of wearing this identifying tag, which should note that your loved one is “memory impaired,” and also include your phone number. Although your loved one may not be wandering or getting lost just yet, there’s a good chance that he will someday, and this simple tag will spare you from hours of worry.
• Keep the impaired person active, but not upset. Try to involve your loved one in simple, familiar activities that he enjoys. Staying active can help maintain physical well-being and helps boost self-esteem by making him feel involved. At the same time, don’t expect your loved one to be able to learn complicated new tasks or skills, which can only frustrate him. Some people may be able to learn new tasks or skills if they are simple and repeated often enough. But too much pressure to acquire new knowledge can be upsetting and frustrating. As the caregiver, it’s your job to balance his activities.
The people who surround you as you confront Alzheimer’s will be important to how you cope with the disease. Loving, considerate care from a devoted caregiver can make a big difference for people suffering from Alzheimer’s Disease. And having good healthcare professionals, who are knowledgeable and well versed in Alzheimer’s care, can help provide the treatments you need to try and slow the disease. They can also provide the support you and your family need to get through the darkest days.
If you’ve just been diagnosed with early Alzheimer’s and have the wherewithal to have a say in your care, begin laying out your concerns and wishes now. Establish early on how you want your care to progress, who you’d like to care for you, and how you’d hke to be treated. If you have a favorite doctor, let your family know about him now. Or if you prefer going to one pharmacy over another, speak up now. Having a say in your care will give you greater confidence and peace of mind.