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

by Nancy Wurtzel on August 5, 2014

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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.

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{ 2 comments… read them below or add one }

1 Joanne Berrigan August 8, 2014 at 12:48 pm

I don’t think I’m amiss in assuming this statement is referring to a caregiver who is emotionally attached to the person with Alzhiemer’s (PWA) – be it a family member, spouse or close friend. As such, a huge challenge that I see is that one can never fully be prepared for the emotional toll that the many unknown changes in the PWA summon. As we cannot, ever, prepare ourselves for the death of someone we care about, neither can we prepare ourselves for the mini deaths and losses (of hopes, dreams, support and abilities) and the emotional toll of these challenges and losses.
As such, it is news to many, that even someone who is a caregiver by profession (nurse, PSW, mother, therapist….etc) – even they are challenged by caring for a PWA that they love. These people/professionals may have a better skill set at taking care of some practical needs, they may even have theoretical or previous first hand knowledge about how to deal with the changes and losses that the PWA is experiencing and is confronting them with – but as everyone is so unique – so is the grief and so is the love that ties us to that person.
That is what I see as the hardest part. Providing support and product(s) for practical needs is easily done – ensuring that caregivers have appropriate emotional support….where do we start and how? Just my 2 cents. Cheers. JB

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2 Carol Bradley Bursack August 6, 2014 at 6:45 am

Thanks for a terrific post, Nancy. People with dementia are as unique as those without the disease. Dignity is essential and part of that is recognizing their uniqueness. As you say, what works for one person may not work for another – or may work at another time but not right now.
You do wonderful work.
Carol

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