By Paula Spencer Scott, Caring.com senior editor http://www.caring.com/articles/alzheimers-care-from-a-distance
Long-distance help for someone with Alzheimer’s
Whether you live across the country or across town, if you’re not the one primarily responsible for the care of someone with Alzheimer’s or some other form of dementia, it’s easy to feel helpless or be unsure how to help. Here are some productive ideas.
Lend a supportive ear
It’s simple but critical: offer emotional support to the person’s primary caregiver. Caregiver stress is a constant threat. Acknowledge to him that it’s a very real problem and address the issue before it morphs into burnout. Especially when the caregiver is the patient’s spouse or another family member, check in regularly to see how he’s feeling and to ask how you can help.
Checking in if it’s a professional caregiver can likewise boost morale and help avoid a disruptive staff turnover. Listen attentively to the primary caregiver’s concerns. Look for areas where you can provide practical help (such as locating a support group or relief care for him), and try not to be overly critical when evaluating the care he’s providing. Remember to thank him.
Connect with the patient
Someone suffering from Alzheimer’s may not always remember that you just called or visited, but your doing so anyway makes her happy in the moment and eases stress — important to her overall well-being. Be aware that phone calls may become uncomfortable for the person, because memory loss interferes with her ability to follow conversations and she can’t benefit from facial cues and other body language. Even if the person is your parent or a family member, introduce yourself clearly and avoid asking questions that might seem like memory tests: “What did you do last weekend?” It’s better to give an update of what you’ve been up to. Ask easy yes-no questions: “Do you like your new easy chair?”
Write letters and send cards, even if these have never been your preferred modes of communication. She’ll likely find it easier to follow what you’re talking about if she can review something on paper at her leisure.
Another good way to say hello is to send photos with labels on the back that identify everyone in the picture. In addition to pictures of family members, send images of your home, your new dog, a re-covered sofa, a vacation, and other experiences that tell about your life.
Don’t leave all the medical know-how to others
Even if you’re not providing hands-on care, if you understand the key issues in Alzheimer’s disease and its care, you can keep better track of what’s going on. One of the biggest complaints of caregivers is that relatives and friends living far away have no idea how much work is involved in caring for someone with Alzheimer’s, nor do they realize how many different issues there are to manage. Learn the basics about the disease’s progression and manifestations.
Provide help
Lend the primary caregiver an active hand, perhaps preparing a meal or tackling a cleaning chore. Observing and participating in the person’s care will also help you identify other areas where you may be able to help, like replacing a small appliance that’s not working properly or sending flowers on a monthly basis because she enjoys them so much.
Plan your visit with the purpose of giving the primary caregiver some respite, if you can. Day-to-day caregiving can be time-consuming and exhausting. Caregivers need an occasional break. If you’re uncomfortable doing this, start with short outings or day trips so you can learn the ropes, and work up to weekends or longer stints.
Don’t forget to build in leisure time for you to spend time with the person. Join her in relaxing activities such as looking through photo albums or participating in activities that she enjoys. Stick as much to her regular routine as possible, however, so as not to agitate or confuse her. Depending on her condition, dinner at home may be less stressful than taking her out to a fancy restaurant, for example.
Be the techie
If nobody directly involved in the person’s care has the inclination, ability, or time to research assistive technology, volunteer to do this. Software can provide computerized or voice-activated medication and appointment reminders, for example. Assistive devices and sensors can locate lost objects and detect overheated rooms, floods, carbon monoxide, wandering, or falls. Ask your local Alzheimer’s Association branch or a geriatric care manager for suggestions appropriate to this particular situation.
Provide financial help
Alzheimer’s care — including medications, home healthcare visits, adult daycare, and medical checkups — is expensive. Insurance and Medicare leave many things without coverage. Offering financial assistance is one of the most common ways physically distant children or other relatives and friends can help. You could contribute a set amount on a regular basis, for use as needs arise (“unrestricted funds”).
Or, depending on your budget, arrange to be billed directly for a particular aspect of care, such as home-healthcare visits or a professional service that makes the person’s life easier — housecleaning, meal delivery, prescription delivery, or lawn maintenance. If the patient doesn’t use such services now, look into initiating them. When you need to locate a particular service, check the Yellow Pages for her area.
In lieu of cash, one way to help financially is to work with the primary caregiver to figure out whether any of the patient’s long-term care expenses qualify as tax deductions or credits (for either the patient or the caregiver). You could also offer to help with taxes or arrange direct deposits for bill-paying. With so many responsibilities and tasks to take care of day to day, the caregiver may not have time to do these things herself.
Stay in the loop
If the person with Alzheimer’s is a parent or other close relative, or a close friend, it’s a good idea to keep a copy of her medical care and history, if she’ll give legal approval. You should also have a list of the physicians and other healthcare professionals who care for her. This information keeps you up-to-date for times when you or family members need to make decisions with each other, or when you need to provide backup care in case the primary caregiver unexpectedly can’t do the job.
Join a local Alzheimer’s group
Some people find it helpful to learn from the experiences of others at a local Alzheimer’s support group, even though they themselves live at a distance from the patient. Hearing from caregivers, family members, and friends caring for someone with Alzheimer’s can give you new perspectives on this person’s situation. While the disease affects everyone differently, commonalities exist, and you can learn helpful coping strategies and ways to provide support.