Five Lessons I Learned From My Years as an Alzheimer's Caregiver

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Why is life so much clearer in retrospect? With the passage of time, it is easy to look back, see the big picture and think: “If I’d only known then, what I know now.”

I often hear caregivers voice this sentiment. And, as a long-time Alzheimer’s caregiver myself (for my mother, father and other relatives — now all deceased), I feel the same way. In the rear view mirror, the decisions and choices that I agonized over at the time now either seem so obvious or so trivial.

I wish I’d not been so caught up in details that were unimportant.

What is important, as a caregiver, is to treat your loved one and yourself with dignity, empathy and compassion. Not everything will turn out how you want, but care giving is not a perfect situation and you are not a superhero.

Even though no two care giving journeys are exactly alike, I’ve put together a few takeaways you may find helpful.

Five lessons I learned from my Alzheimer’s caregiving experience:

1. Caregiving is a Marathon, Not a Sprint.

The most effective caregivers learn to pace themselves, so they avoid their own physical and mental burnout. Caregivers need to be resilient as the journey can sometimes go on for many years. Taking time to recharge your own well-being is the only way to withstand an extended care giving experience. Part of the recharging is learning it is okay to ask for help and to accept any assistance offered by others. Keep in mind that you must keep yourself healthy – both physically and mentally — in order to be an effective caregiver.

2. Adjust to an Ever-Changing Situation.

Most illnesses, especially Alzheimer’s disease, are progressive, which means abilities ebb away over time. For many patients, what was successful one day may not work the next. When this happens, it’s important not take these changes personally and remember the goal is to meet the person at their current level of function. The caregiver has to remain flexible to these changing capabilities and interests.

3. Good Enough Can Really Be Good Enough.

I tend to lean toward perfectionism. However, it became apparent that if I clung to perfection, I’d spend all of my time trying to reach this unattainable goal. What a waste of time and energy! Instead, I decided to let go of flawless and concentrate on living in the moment, however imperfect.

4. Look Deep and Find the Joy.

When an individual is immersed in care giving, there can be feelings of anger and sadness. While it is perfectly natural to experience these emotions, there can also be a tremendous amount of joy and laughter in care giving — often at the most unexpected times. The key is to remain open to these moments so you can feel the happiness. It can be as simple as a smile, a touch or shared laughter or it might be a glimpse of clarity from an Alzheimer’s person who is in an advanced stage of the disease. Either way, these small events are touching and can help sustain you during your care giving.

5. Talk is Always Good for the Soul.
Bottled up, unresolved feelings can make for a resentful caregiver. If left unchecked, these feelings can even make a person sick. It’s important to find friends or family who will listen, understand and not pass judgment. Support groups are also an incredible lifeline to can help you navigate care giving and I highly recommend joining one. In fact, support groups can connect you with valuable resources and services that you may not know about. Best of all, you will connect with other individuals, like yourself, who are also caregivers. You may be surprised how much you will benefit from others who are traveling a similar path.

Nancy Wurtzel, a communications professional, is the editor of the blog DatingDementia.com, about midlife issues, including divorce, dating and caring for an elderly parent with Alzheimer’s.