By: Emily & Scott Sutherland
According to the National Alliance for Caregiving and the Alzheimer’s Association, approximately 12% of care partners live more than an hour from their loved ones with Alzheimer’s disease. However, with COVID-19 restrictions keeping memory care facilities closed to visitors, many more care partners now find themselves facing the challenge of staying connected and involved in the health of Alzheimer’s patients without being physically present.
Preemptive Planning
If the person is still living at home and you can plan a visit, be sure their living space is safe and everything is in working order. For example, making sure their appliances are functioning well, walking areas free of tripping hazards, and other potential safety issues in their living space.
Simple thoughtful gestures such as labeling cabinets and drawers, providing clear instructions for the use of household items like the television remote or coffee maker can empower your loved one with support when you can be there to show them. They may also appreciate a list of names and phone numbers (or photos with phone numbers for those who struggle with reading) to help empower them to reach out to others as needs arise. The Gayle Wells Foundation has created a home safety checklist that can serve as a useful guide in assessing the safety of your loved one’s living situation.
Everything runs more smoothly with a bit of extra planning and organization. If you haven’t already begun to help with the person’s finances, moving to online bill payment allows you to manage their bill payments remotely, protecting the patient from having laps in service or overpaying due to confusion or inability to keep track of their accounts.
Building Partnerships with Healthcare Professionals
The nurses, doctors, and other healthcare professionals are likely working harder than ever right now and need to know they are appreciated. Additionally, building bridges with your loved one’s care team creates an important partnership where ideas can be exchanged, health updates given, and messages relayed as needed.
If you haven’t done so already, it is helpful (as early after diagnosis as possible) to ask your loved one to provide you with written permission to access their medical information. Once this has been done, doctors and specialists can include you in all communication pertaining to your loved one’s health. Being able to assist a person with Alzheimer’s to keep appointments, track medications, as well as communicate with doctors and specialists, will help you advocate for them, either in person or from a distance. When you have built a strong, communicative relationship with health care workers or others who have direct contact with your loved one, they can notify you of any unmet needs or changes in their condition.
The Gayle Wells Foundation has created a checklist of common symptoms/changes that could be helpful in assessing the progression of symptoms or overall well-being of your loved one. Categories of symptoms/changes to assess include:
- Communication
- Social engagement
- Judgement / decision making
- Orientation / recognition to time, place and people
- Bathing & grooming
- Nutrition & hydration
- Toileting
- Physical
- Wandering & safety
Building Strong Bonds
Aside from the necessary details of caring for loved ones’ health, the truth remains that Alzheimer’s is an isolating reality. The most important thing we can do for people with this disease is continually assure them that they are valued, loved, and known, even from a distance. One gripping news story recently showed a husband singing to a love song to his wife of more than fifty years through the window of her care facility.
The use of technology in order to stay connected, through phone calls or video apps can be a helpful way to connect with loved ones. Technology may become increasingly challenging as the disease progresses, however, so for people in later stages of the disease, remote connection will require an entirely new level of energy and creativity.
You may find it helpful to think of ideas using the five senses:
Sight – Sending visual expressions of care might include photographs, signs or drawings to hang in their living space, scrapbooks, or cards with beautiful things that hold special significance to them. Silk flowers can brighten up a space without requiring the water or upkeep fresh plants or flowers require.
Sound – Music is a powerful gift that touches the soul in a unique way, but especially those with memory issues. Consider ways your loved one can enjoy recordings of a favorite artist, genre or era, perhaps with the help of care workers or even playing music through your phone.
Smell – There’s nothing quite like the familiar smell of a favorite candle or flower to trigger feelings of comfort and contentment. Even a favorite perfume or essential oil on a cotton ball can be enclosed with a letter and can offer a meaningful touch of thoughtfulness.
Taste – A care package with a favorite treat or beverage is another thoughtful option. One woman remembered her mother’s lifelong love for ice cream and found ways to make sure her mother was served ice cream whenever possible.
Touch – A soft blanket, stuffed animal, or cozy shawl can provide a pleasing sensory experience in all stages of the disease, even when other senses begin to fade. Helping your loved one feel physical comfort can even be as simple as sending lotion for healthcare workers to apply to dry skin, or warm socks for those who tend to have cold feet. Gayle Wells, who was an animal lover, enjoyed visits from a pet even when the disease took its rapid decline.
One of the misunderstood truths about Alzheimer’s disease is that the person you know and love is still that person at a deep, internal level, even when they cannot communicate with you. People in all stages of Alzheimer’s or dementia can still feel emotions and sensory input, whether or not they can communicate them. Even when you are exhausted and aren’t sure you are getting through, know that your care is more essential than your loved one can tell you. Take lots of deep breaths and take heart in knowing that your role in fighting this disease is vitally important. And you can be sure the Gayle Wells Foundation is here to support you in any way possible.
You are the reason this Foundation exists, so please let us know how you are doing, what you need, and what you are discovering that could help others who are caring for a person with this disease. You can reach us at laura@gaylewells.org.