Getting the diagnosis of Alzheimer’s disease today is much like what getting a cancer diagnosis used to be for some people: devastating, often debilitating, and leaving one not knowing who to tell or where to turn. Years ago when I was a nurse, some patients didn’t want their families to know they had cancer. While cancer patients have gotten braver about their need for support and advocating for treatments and cures, many individuals diagnosed with Alzheimer’s disease still fear the stigma…and the confusion over what to do next.
That’s why family support is crucial. A diagnosis of Alzheimer’s or dementia affects everyone who loves and cares about the individual who receives the diagnosis. As a caregiver, you may feel a range of emotions, from fear to concern to confusion. Learning to recognize your feelings and getting the support and knowledge you need about the diagnosis can help you and your loved one navigate this new world.
Some of the emotions you may experience include:
- Denial. While totally understandable, ignoring the diagnosis will not make it go away. It can also delay your loved one getting the help he or she needs. While the symptoms are mild, it is a good time to engage your loved one in examining potential treatment options as well as planning for the future keeping quality of life in mind.
- Fear. Your fears about the future may prevent you from focusing on what you can do today to help your loved one cope with the diagnosis. A person in the early stage of dementia may only need cues and reminders to help with their memory. As a caregiver, you don’t want fear to immobilize you so that you can’t help them remain independent as long as possible.
- Stress/Anxiety. Taking care of yourself is important. You may need to remind yourself to stay healthy through diet, exercise, and regular visits to the doctor so that you can help your loved one cope with their memory issues.
- Anger/Frustration. Anger at the diagnosis is a natural response. You may also feel frustration at knowing that you will now be responsible for the care of someone who may have always cared for you. This is often not an easy thing to accept. Know that you are not alone. It’s a good time to reach out for support and to get educated on the resources that are available for families. The Alzheimer’s Association is a great resource for locating a local support group where you can learn more about Alzheimer’s disease and related dementias and meet others going through similar situations.
Your loved one with Alzheimer’s or dementia may be experiencing many of the same emotions. Being able to talk about these emotions together may help both of you work past these feelings and be able to spend more time enjoying the present.
At Hebrew SeniorLife, we understand how difficult a time this can be for families. As the numbers of those diagnosed with Alzheimer’s disease and dementia continue to grow, more families will need support and guidance. As we work to create a center for memory care, helping families as well as individuals, will be a primary goal.
We will provide support for family members who have loved ones with a cognitive disorder living both at Hebrew Rehabilitation Center, and in our community at-large through the planned center for memory care. Family and caregiver support will be a significant focus of the center’s work, along with advocacy, research, and developing best-practice models for treatment of cognitive disorders.
As families engage more and learn more, the stigma surrounding Alzheimer’s disease and other memory disorders will hopefully dissolve. At HSL, we are committed to helping families and individuals cope with a diagnosis of Alzheimer’s or dementia at whatever stage they need. We know that this could mean a better quality of life for so many people.
Join us. The Alzheimer’s Association’s Caregiver Support Groups are designed to provide emotional, educational, and social support for caregivers through regularly scheduled meetings.
Date: First Tuesday of every month
Time: 5:30 pm – 6:30 pm
Contact: Pre-registration is required to attend this group. To register, or for additional information, please contact Rosalyn Mamiak at 781-234-9664.