Written by Charlene Thurston, RN, ANP, Director of Hospice
Since we, at Hospice, have participated in recent nation-wide efforts to raise awareness about the effects of Alzheimer’s Disease on patients and families, we thought that creating a guide of readily available resources for residents of the island might be helpful. Our hope is that people will be able to easily determine how to access help and support, from the time in which symptoms develop and throughout the course of the illness.

When concerns about memory develop, the best things to do are to make a doctor’s appointment for an evaluation, and to learn about Alzheimer’s and other dementias through books, websites, & various organizations. www.alz.org and www.alzcapecod.org are two good websites. Our Hospice website (www.hospiceofnantucket.org) lists several good books, which we’ve donated to the Saltmarsh Senior Center for loan, and also lists links to other resources.

If a diagnosis of Alzheimer’s Disease or other dementia is made, your physician will prescribe treatment and follow up visits as necessary. You & your family will probably want to continue learning about the disease process and many of the situations which can arise, so that preparations may be made for how to handle them. Putting legal affairs in order and doing advance care planning (living wills, health care proxies, etc.) are important tasks to complete early in the disease process, while memory and reasoning abilities are good. Tending to other priorities, such as work or business affairs, relationships, travel, documenting your life’s story for your family, preparing a legacy, and doing everything that gives your life meaning are also important. Keeping our affairs, including our relationships, in a state of completion is a principle by which all of us should live, whether sick or well, since none of us knows what tomorrow may bring.

As time passes, education and support for handling various concerns may be needed, such as, management of memory problems, behavioral concerns, safety issues, emotional impact; medication management; caregiving. It’s important to know that there are many services in the community that can be very helpful, and that patients and caregivers will cope much better if they utilize the support which is available to them. Following is a list of community resources. By contacting any of the following organizations, you should be able to receive support and guidance in how to proceed.

Alzheimer’s Services of Cape & Islands: information, education and support for patients & caregivers. (508-775-5656) (www.alzcapecod.org)

Island and Consultant Physicians – provide diagnostic evaluation and ongoing treatment

Nantucket Cottage Hospital – provides full services as an acute care hospital,; physical, occupational, & speech therapy evaluations and treatment are available through Rehab. Services Dept. (508-228-1200)

* Social Services Dept.—provides information, support, and assistance with a variety of issues, such as, health insurance, accessing Free Care Program of NCH, advance directives, referrals for various services including private home care aides, patient/family support, assistance for non-English speaking clients. All services are free of charge. Lifeline, a personal emergency response system, is available for $35/month.(508-825-8195)

* Hospice Care of Nantucket—in early stages of illness and throughout, provides education, counseling, & support for patients and/or families; assistance with advance directives; monthly support groups for family caregivers; volunteers for up to 2 hours, twice/week; lending library. During the terminal stage of illness, comprehensive hospice services – physical, emotional, & spiritual care in home, hospital, or nursing home setting. Bereavement support is available to families for a year after the death of a loved one. All services are free of charge. (www.hospiceofnantucket.org)

* Community & Home Health Dept. – certified home health agency that provides nursing, physical, occupational & speech therapy, home health aides, social service, and nutritional counseling. Rehabilitation therapists evaluate the patient and the home to improve functioning and safety. Insurance coverage, if eligible, or fee for service. Free consultations available. (508-825-8300)

Elder Services of Cape & Islands – for individuals who are 60 years old or older and meet financial eligibility, offers case management, family caregiver education & support, homemaking, personal care, respite care, chore services and referrals. Low fees, based on income. Meals on Wheels provides daily meals to homebound elders. Suggested $2 voluntary donation. (508-228-4647)

Our Island Home: Monthly support group for caregivers. (Free of charge.) Full residential nursing home – costs are covered by Mass. Health, if eligible, or private fees on a sliding scale. (508-228-0462)

* Adult Community Day Center: supervised social day care program, located at the Teen Center. Open 3 days/week. Subsidized by Elder Services, for those who qualify, or fee for service. (508-325-5349)

Nantucket Behavioral Health Service – full service counseling center, which includes supportive counseling for caregivers. Costs are covered by insurance, if eligible, or fees on a sliding scale. (508-228-2689)

Churches – pastoral counseling and support available through most churches, usually free of charge.

Isle Return – a registry for persons with memory impairment who are at risk for wandering. (Sponsored by the Nantucket Sheriff, Police and Fire Depts., Community and Home Health, and Elder Services.)

Private services: in addition to the above organizations, numerous services are offered through private counselors, personal care aides, and complementary therapists, on a private fee for service basis. (Complementary therapies include a variety of modalities which often enhance overall well being of patients & caregivers and may improve functioning. Some examples are massage, reiki, yoga, tai chi, art therapy, music therapy, movement therapy, chiropractic, jin shin jyutsu, acupuncture, aromatherapy.)

Please don’t hesitate to call upon us. We’re here to serve you.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

A Partnership in Caring

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