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Caregiver Health
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"Music has different effects on us: physically, psychologically, even cognitively," says Al Bumanis, director of communication for the American Music Therapy Association, and a board-certified music therapist in Maryland. "That said, you must be aware of what the music is doing. Is it energizing you or relaxing you? Then you have to find the music that has the desired effect."
Bumanis adds that "music is very individualized. If you're looking for a relaxation response, playing hard rock or faster-tempo rock might not do it—but that's not the case with everybody." He suggests going to a music therapist who would "do evaluation and assessment, incorporating cultural background, and see how different music affects you.
"For most music therapists in clinical music therapy," Bumanis adds, "it's [about] creating music, engaging the client, whether drumming together, singing together, or creating music in other ways. Maybe playing an instrument can be relaxing, rather than more passively listening to music. Or you can do a mix of both. The key is to find what works for you."
Caregiver Support
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"An assisted living facility will, in general, provide room and board and help with bathing, dressing and other activities of daily living. Some help with self-administration of medicines," says Robert Mollica, senior program director at the National Academy for State Health Policy in Portland, ME. But, he cautions, policies governing facilities are determined by state and can differ depending on where the facility is located.
The first step in choosing an ALF is to understand the regulations provided by "the agency responsible for licensing facilities. This can be done through your state's public health department or office on aging," Mollica explains. Then you must contact the facility or facilities you're interested in and "see how each facility applies [the state's regulations]. Regulations may say, for instance, that if you develop a health condition that requires nursing care, you can stay. But," Mollica points out, "a facility may choose not to permit that. It's important to understand under what circumstances the facility could ask you to leave."
Care Recipient Health
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Dysphagia—the umbrella name for swallowing disorders—occurs in later-stage Alzheimer's when "the deterioration of tongue, throat, and voice-box muscles and sensation interferes with swallowing coordination," says Robert W. Bastian, MD, founder of the Bastian Voice Institute for Voice, Swallowing, and Airway Disorders in Chicago.
There are, according to Dr. Bastian, noticeable warning signs: "Frequent coughing during and after drinking or eating, or a ‘gargly' voice" are chief among them.
Dr. Bastian does offer some remedies. "Be sure he eats with attention and vigor. Also, choose food carefully. In many cases, thin liquids [should be] avoided; thicker liquids flow through the throat more slowly and give more time to respond and re-swallow. And," he adds, "consider patient positioning; many swallow better with their chin tucked down toward the chest, as though gazing at one's belt buckle." Also, coaching can help. Dr. Bastian suggests you encourage your dad to "optimize the eating experience: ‘Swallow again, Dad. Let's sip a little juice next.'" The right kind of attention is a potent ally.
Communication
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Your wife's hesitation may involve several obstacles. "Psychologically, this is a huge issue and it must be handled delicately," advises Mary Jane Minkin, MD, board-certified obstetrician/gynecologist and clinical professor at Yale University School of Medicine. Remember that the surgery—lifesaving a procedure as it may be—has most likely left your wife with psychological as well as physical scars.
By bringing the issues out in the open, you hopefully can work through them together. The object is to make your wife as comfortable as possible in all ways. "Acknowledge that this is an intimate matter," says Dr. Minkin. "The most important thing is to say, ‘I still love you and want you.' Encourage her to express whatever anxiety she has. Get her to say, ‘I'm concerned about this and embarrassed about that.' If you need a counselor, that's okay, too."
Beyond your wife's possible self-image issues, there could be physical causes for resistance. For instance, chemotherapy often causes vaginal dryness. This is a subject, Dr. Minkin notes, that women are reluctant to discuss. She recommends the use of vaginal lubricants, such as the non-hormonal product Replens. "If there are other physical issues," adds Dr. Minkin, "she should talk to her healthcare provider."
Finance
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There definitely are areas you shouldn't neglect. "Confirm that Social Security deposits are being made, keep track of minimum required distribution from IRAs, make sure bills don't get lost and reconcile bank statements," says Barry Krostich, CPA, a partner at Krostich & Krostich, LLP, in Roslyn Heights, NY. But what comes to mind most, he says, is medical expenses.
"Tax-wise, you want to keep track if your parents would benefit from a medical deduction." The rule, according to Krostich: "Medical is deductible if it exceeds 7.5 percent of their adjusted gross income, which may be the case if their income is low or average and they have a lot of medical expenses."
Beyond that, keep an eye out for medical-budget details. For instance, if they see an out-of-network doctor, Krostich reminds that it's important to monitor payments. "Your parents pay the doctor and then they have to get reimbursed from Medicare or any other supplemental insurance," he notes. "Make sure you get back the money on that."
Legal Issues
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Without a durable power of attorney, says Mark W. Worthington, partner of Smith Worthington, LLC, in Worcester, MA, and president of the Massachusetts Chapter of the National Academy of Elder Law Attorneys, Inc., "no one has the authority to manage your dad's financial affairs, deal with his solely held assets—including IRAs and 401(k)s—and sell or refinance the home he owns jointly with your mother, if, let's say, he becomes incapacitated."
They each should, adds Worthington, have both "a durable power of attorney and a healthcare proxy. The former grants you or someone else your folks trust the power to handle nearly all non-medical affairs; the latter, medical matters."
Travel
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"Your local chapter of United Cerebral Palsy will be your best source," says Dr. Mindy Aisen, director of the United Cerebral Palsy Research and Education Foundation in Washington, DC. "They will know what other children have done locally and what has or hasn't worked well. They also can put you in touch with other parents."
Along with specialty camps, she adds, "an alternative is to send your child to a camp that is principally designed for children without developmental difficulties. It's been my experience that not-for-profit programs usually make accommodations for kids with developmental disabilities. They put an extra counselor in the cabin to help the child be included. You'd go through your local public school for this."
Asking lots of questions about safety and how your child will be involved in activities is key. "It's a great sign if they're open to your visiting during camping season," says Dr. Aisen. "A child with CP is like any child. How you would you make this decision would similarly be based on word of mouth and personal recommendation more than who's got a good ad."