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Coping with a difficult diagnosis

Joan Hatem-Roy Chief Executive Officer

Question:  My husband was diagnosed with a debilitating neurological condition. We have been told there is no cure, but medication may slow his deterioration. Neither of us is dealing well with the emotional and physical changes that have already occurred. Other than following the physicians’ advice, is there anything else that would be helpful?  

Answer:  This is an all too familiar scenario for those of us in the aging services field. After receiving the news of a chronic or terminal diagnosis, patients and family members may experience intense emotions. Feelings of sadness, fear, or hopelessness are all very natural. Some people may think they will beat the odds, while others slip into denial. How people learn to cope can have a positive or negative impact on their functioning throughout a disease, according to healthcare professionals.  

Your insight in recognizing the challenges you face and admitting you need additional assistance is a major step in the right direction. You have several options you both can explore, individually or together. For example, caregiver support groups provide a safe environment to openly express your feelings while learning from others who face a similar situation. Establishing relationships with other caregivers can bolster your confidence to endure the days ahead and realize you are not alone. You may also find disease-specific support groups beneficial. While it will remain important for you and your husband to keep communicating as openly and honestly as possible, this may become painful for both partners. As a couple, you are going through this together but each of you may have differing concerns. If speaking in front of others seems uncomfortable, consider scheduling sessions—as a couple or individually—with a private therapist.  

In many communities, trained lay leaders are conducting chronic disease self-management programs which attendees say are very helpful. The six-week sessions held once per week, focus on such topics as the appropriate use of medications, nutrition advice, effective communication with healthcare professionals, and relaxation techniques. Participants learn more about strategies for dealing with frustration, pain, and fatigue. These programs are not in conflict with regular medical care and may enhance outcomes. To find locations for any of the groups mentioned, call 1-800-892-0890.  

Are you struggling to care for an older adult or having difficulty locating resources? Our experienced staff is available to help. Visit us online at www.ESMV.org for more information. You can also call us at 1-800-892-0890 or email ageinfo@esmv.org. Joan Hatem-Roy is the Chief Executive Officer of Elder Services of the Merrimack Valley and North Shore.