Alzheimer’s 101 – Alzheimer’s Caregivers

“The caregivers in my life have been incredible. They lift me up and keep me moving forward. Their strength and dedication inspire me every day.” – Pat Summitt, former head coach of the University of Tennessee Lady Volunteers basketball team. Pat was diagnosed with early-onset Alzheimer’s disease in 2011 and passed away from the disease in June 2018.

An Alzheimer’s diagnosis is devastating for the person receiving the diagnosis and also family members and friends who will serve as primary or secondary caregivers for that individual. In past blog posts, we’ve talked about how Alzheimer’s impacts the individual who is diagnosed; this month we will talk briefly about the caregiver’s experience with Alzheimer’s.

From the Alzheimer’s diagnosis to the late-stages of Alzheimer’s, the role as a caregiver changes. Below is some high-level information on what to expect during the early, middle, and late stages of Alzheimer’s.

• Early-Stage Caregiving: The person in the early-stage may need help with keeping appointments, remembering words or names, recalling familiar places or people, managing money, keeping track of medications, transportation, and planning / organizing. Emotions the caregiver may experience in the early-stage are denial, fear, anxiety, anger / frustration, and grief. The individual living with Alzheimer’s will likely experience some or all of these emotions as well. For the caregiver(s), it’s important to start thinking about building a support network, asking and accepting help, continuing to stay healthy, and continuing to be involved in activities that are important to them.
• Middle-Stage Caregiving: Communication for the individual living with Alzheimer’s changes during the middle stage, and includes trouble finding the right word, repeating questions, and losing train of thought. As a caregiver, speaking slowly and in a gentle tone can help improve communication. Additionally, daily care needs such as eating, dressing and grooming become more challenging for the individual as Alzheimer’s progresses. It is important, however, to encourage the person living with Alzheimer’s to do as much as possible, but as a caregiver, you will need to be ready to help when needed. For example, when dressing, you can give direction indirectly by laying out clothing in the order in which item is to put on. Activities that provide meaning, such as making dinner together, gardening, listening to music, or going for a walk also are important and can help reduce stress and agitation for the person living with Alzheimer’s.
• Late-Stage Caregiving: As the disease advances, the needs of the person living with Alzheimer’s will change and deepen. A person with late-stage Alzheimer’s will have difficulty eating and swallowing, will need walking assistance, will need full-time help with personal care, and will be vulnerable to infections. As a caregiver during the late stages, it’s important to focus on preserving the quality of life and dignity. While the person in the late stage usually loses the ability to talk and express needs, research indicates that some core of the person’s self may remain. This means continuing to connect throughout the late stage of the disease is possible. At this point in the disease, the world is primarily experienced through senses. Things that can be done include playing his or her favorite music, looking at old photos together, preparing a favorite food, brushing the person’s hair, or sitting outside together on a nice day.

Generally speaking, there is usually a primary caregiver and then secondary care partner(s). In my family, my dad is the primary caregiver for my mom, and my siblings, aunts, and a few of my mom’s friends are secondary caregivers. We’ve found that communication amongst all of us is very important to ensure someone is available to spend time with my mom, especially when my dad has a work or volunteer responsibility. My mom is no longer driving, so it’s important that she isn’t alone for extended periods of time.

For my entire life, my mom has always been the incredibly reliable caregiver – driving kids to school and sports; always making sure breakfast, lunches, and dinners were available; she always knew exactly where that random shirt or sports uniform was when we couldn’t find it… Even as I was packing to move from Newport to Boston, her caregiving and motherly instincts naturally came back – she wrapped up all the fragile items in my kitchen in record time. As the disease progresses, it’s going to be very hard and very emotional to see my mom’s caregiving abilities continue to diminish… however I know I speak on behalf of my family members when I quote Tia Walker, an author, speaker, and Alzheimer’s caregiver advocate, when I say “to care for those who once cared for us is one of the highest honors.”

Additional information for Alzheimer’s caregivers can be found on the Alzheimer’s Association website: https://www.alz.org/help-support/caregiving

———————————————————————————————————————————————————–

Next Up: Ask a Finn. This month, you’ll hear from my sister, Stephanie.

———————————————————————————————————————————————————–