Post image for In Retrospect: Five Lessons I Learned From My Years as an Alzheimer’s Caregiver

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. Please feel free to leave comments with your own ideas that may be helpful to others.

Five lessons I learned from my Alzheimer’s care giving experience:

1. Care Giving 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.

What lessons have you learned from your own journey as a caregiver?  Please feel free to share in the comments section.

*Photo Purchased From iStockPhoto

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Post image for Can a Person Ever Be Fully Prepared to Care For Someone with Alzheimer’s?

Earlier this year, I attended a caregivers conference at the University of Minnesota.  The morning keynote speaker was absolutely terrific — an engaging, informed speaker who was also funny and self-deprecating.

The speaker’s bio was also impressive.  He was a physician, a teacher, an author as well as a long-time caregiver for his mother who had Alzheimer’s disease.  The man knew his stuff.  Yet, even with all of his education and experience, the speaker kept coming back to a central theme: All the planning in the world won’t prepare a person for becoming an Alzheimer’s caregiver.

Why?

Many reasons.  The main factor is the disease itself: It is totally unpredictable.

I’m sure you know the well-worn saying, ‘If you’ve met one person with Alzheimer’s, then you’ve met one person with Alzheimer’s.”  It’s often repeated for a reason.

Alzheimer’s, or whatever disease is destroying the brain, doesn’t follow a set pattern.  Every journey is different and the disease takes twists and turns one never thought possible.  Even the best physician or care expert cannot tell you how the disease will progress and how it will ultimately manifest in the person.  The experts know only that the brain will continue to deteriorate .

Likewise, a care technique that works with one Alzheimer’s patient may not work on the next person.  And, what was effective yesterday might not be tomorrow.  Alzheimer’s disease shifts constantly.

So why don’t we simply give up?

Because that alternative is unacceptable.  As caregivers, we have to keep learning, innovating and testing.  When a technique doesn’t work, we attempt something else.

The conference speaker was right — being completely prepared is elusive.  Yet, we still keep trying.

Photo from iStockPhoto

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AARP Feature: When Dementia Symptoms Are Not Alzheimer’s Disease

July 30, 2014
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Although it was years ago, I clearly remember the phone ringing on a hot California morning.  My mother was calling from Minnesota and she sounded a bit frantic.  Earlier that morning, she had taken my dad to the emergency room.  Dad was having a “spell” as she described it, exhibiting confusion, irregular heart rate, muscle […]

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The Mini-Cog, A Memory Assessment Tool

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Have you heard of the “Mini-Cog”?  I had read about it several years ago but a recent front page feature in the Star Tribune, our major daily newspaper in the Twin Cities, piqued my interest.  The story focused on Dr. Michael Rosenbloom, clinical director of the HealthPartners Center for  Memory and Aging, in St. Paul, […]

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Mayo Clinic Identifies New Brain Protein That May Cause Dementia Symptoms

July 22, 2014
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Another day, another Alzheimer’s announcement.  This news was announced by a team from the Mayo Clinic at the recent Alzheimer’s Association International Conference in Copenhagen.  Could it be a big discovery?  The Mayo team seemed to think the answer is yes. The four-year study has uncovered a third component — another protein — to the […]

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Five New Trials Target Alzheimer’s Disease

July 17, 2014
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Last night I noticed a tweet from TIME magazine about some new research trials focusing on Alzheimer’s disease.  Intrigued, I visited their website to learn more.  You can read a very brief overview of each trial by going to the TIME website and reading, “5 Groundbreaking Trials are Testing Ways to Prevent Alzheimer’s.” The headline […]

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