How Caregiving for Those With Alzheimer’s Is Different
BY PAM OSTROWSKI
Many family members think caregiving for a loved one with Alzheimer’s is similar to caregiving for any other disease. It’s very different. The person you are caring for will not be able to help you and may even resist your care and requests. Alzheimer’s caregiving requires that you learn new skills, different communication techniques, and summon lots of patience and creativity while on this multi-year journey. Here are six of the biggest differences.
1) RESISTANCE TO THE DIAGNOSIS
It’s human nature to resist accepting a loved one’s Alzheimer’s diagnosis. Those with Alzheimer’s can otherwise appear healthy, so their diagnosis is harder to accept. In addition, we don’t really understand that our loved one is going to struggle with daily living tasks and forget the memories we’ve shared. However, if we, as family members, don’t accept the diagnosis and start learning about our new role, our loved one will be on the journey alone, scared and unable to help themselves.
2) MAINTAINING QUALITY OF LIFE
To maintain as much independence and quality of life as possible, the brain needs stimulation and engagement. Watching TV or doing a word search puzzle is not enough to keep the brain active. If you choose to live with your loved one, you’re the only stimulation they have and that’s exhausting and not very effective. It’s important that you take your loved one to a senior activity center two or three times a week (for both your sakes). As the disease progresses, memory care communities with staff trained in activities and stimulation ensure that your loved one is safe, happy, and maintaining as much brain function as possible.
3) LIVING AT HOME ALONE BECOMES IMPOSSIBLE
In the early days of dementia, a loved one may start repeating questions and can’t remember where they placed things. They may be living at home, possibly alone. But as Alzheimer’s progresses, awareness of unsafe behaviors—such as throwing a towel on a hot burner or taking too much or too little medication—decreases. A loved one becomes a danger to themselves. In early to midstage, they’ll benefit from an in-home, dementia-trained caregiver. By late stage, they’ll need 24/7 “eyes on” care.
4) COMMUNICATING WILL BECOME MORE DIFFICULT
With most other diseases, caregivers are still able to communicate with their love one. With Alzheimer’s, caregivers find themselves answering the same question many times over, which can get very frustrating. The words your loved one remembers on any given day may change. That means you have to get creative about how you ask questions and make requests. “Go take your shower” may be met with a blank look. One option is to say, “Let’s go get washed up” and walk with them to the bathroom, turn on the shower, hand them a bar of soap and a washcloth and then observe whether they understand. In all communications, you must be respectful that your loved one is an adult who has lived a full life and deserves to be treated with dignity.
5) EATING AND DRINKING ABILITY CHANGES
It’s not unusual for a loved one with Alzheimer’s to gain or lose weight. They simply don’t remember if they’ve eaten and may not register their bodies’ level of fullness. In addition, in mid- to late-stages, sugary foods become a favorite, possibly creating other health related issues. Another significant concern for all seniors is hydration. Most do not drink enough water and research shows that dehydration directly impacts brain function.
6) LENGTH OF THE DISEASE’S IMPACT
Those with Alzheimer’s disease live an average of four to eight years after diagnosis. Most live with mild cognitive impairment for several years before their diagnosis. From the time that I noticed issues with my mom to the time she passed, we went through 14 years of learning how to evolve our skills to accommodate her disease progression and diminished abilities. Note that how Alzheimer’s disease affects your loved one is very individual and unique. The disease progresses over different amounts of time and impacts different parts of the brain, so no journey is exactly like another. Creating a plan early on for how Alzheimer’s can and will affect your loved one’s life and yours is critical for the best experience possible.
ABOUT THE AUTHOR
Pam Ostrowski is the CEO of Alzheimer’s Family Consulting (AlzheimersFamilyConsulting.com) and the author of It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey.