Receiving a dementia diagnosis comes with a combination of conflicting emotions. Perhaps you feel relief that you finally have an explanation for the changes in memory and behavior you/your loved one have experienced over the last few months or even years. You likely have a sense of fear related to the unknown challenges you know lie ahead and the uncertainty about what the future holds. And there may even be feelings of grief over what you and your family believe you are losing, and that the diagnosis does not come with a cure (yet). It’s important to allow yourself the space to experience these emotions and the others that will arise in the wake of a dementia diagnosis. Take time to process them, then begin the work of preparing to travel the dementia journey. These suggestions will not remove all of the challenges ahead, but they will help you be as prepared as possible to face them.
Plan Ahead. One of the first things to do is ensure that all necessary legal arrangements are made for you and your loved one. This should be done early in the journey to ensure your loved one is able to communicate their wishes for care. An Elder Law Attorney is trained to provide legal support and will be able to offer guidance about care throughout the dementia journey. Contact the Senior Services Help Line to help you find attorneys who specialize in elder law.
Connect with Others. Build your support system and learn to accept help from others. People will want to know how they can support you. Allow friends and family to do small tasks that will provide relief. Giving well-meaning supporters a chance to help will not only benefit you, but them as well. Be intentional about seeking out activities and experiences that add joy and value.
Get Help Early. Having someone to talk you through the first few months of this journey may be helpful. Memory Connections is now offered by Senior Services with funding from a grant by the U.S. Administration for Community Living (ACL). It includes Care Consultation, an evidence-based program developed by the Benjamin Rose Institute where Care Consultants are trained and available by phone and/or email to encourage and equip caregivers and persons living with dementia with resources, referrals, education, and information to ensure quality of life throughout the process. Contact a Senior Services’ Care Consultant at 336-721-6966.
Things are changing. My loved one is changing. What do I do?
Be patient. Dementia causes changes that are inevitable –some more difficult than others. Regardless of the type of change (personality, abilities, language, etc.), it is important that you understand and remember that your loved one cannot control what is happening to them and that the disease is making them different. This is usually the most difficult time for care partners and persons living with dementia. The person with dementia is struggling to make mental connections they know they have made before. Caregivers frequently become frightened or angry as the changes become more difficult to navigate. It is normal for caregivers to want to push back against the changes and to “correct” the person with dementia when they say something inaccurate or exhibit behavior outside their normal character. However, that is counterproductive. Remember, empathy and redirecting are key during this time. For example, the request to “go home” is frequent and not usually about a place but rather a comforting feeling or emotion. When your loved one says they want to go home, instead of reminding them they are home (which is likely true), ask them to help you find something specific or offer to give them a snack. Listen to music from their younger years, do a puzzle or even fold laundry. Try to identify what feeling or emotion they need and distract them with something that provides that. This takes practice and patience, but you can do it!
Seek Out Local Support. Caregiving should not be a solo job, you need additional support. Contact those people who offered to help. Tell them things are changing and you need them. Look for local resources that can offer support and assistance. The Williams Adult Day Center is a wonderful resource of support for caregivers and persons with dementia. Participants living with memory loss can engage with specially trained staff and volunteers in activities like music, art, exercise, gardening, and other activities that are sure to engage your loved one mentally, physically (when possible) and socially. If the Williams Adult Day Center is not an option for you, utilizing Meals-on-Wheels (for a hot lunch and a friendly smile five days a week) and Home Care (for bathing assistance) could be beneficial. If your loved one meets the nursing home level of care and qualifies for Medicaid, Senior Services’ Living-at- Home program may be an option to keep your loved one at home in lieu of placement in a facility.
What comes next?
You keep moving forward. Life will assume a new rhythm, allowing you to continue to adjust to changes that are coming your way. Focus on providing care in the safest way possible for yourself and your loved one. For some, this means facility placement and for others, it means caring for the loved one at home. Each situation is unique and there is no one size fits all. At this point, as a caregiver, you are doing the work of several full-time employees! You’ll need regular breaks and respite opportunities to take care of yourself and your loved one. Senior Services Help Line can provide information about caregiver resources and additional community programs and services.
The road you are on is challenging. There will be highs and lows but there is help available. Visit seniorservicesinc.org or call 336-725-0907 for more information and to connect.
This article appeared in the July 2022 edition of Winston-Salem Monthly Magazine