The truth about caring for a loved one with Alzheimer’s

How does one start the dreaded discussion of probable diagnosis with a loved one?

There were numerous yet subtle indications years prior to my husband’s diagnosis of Alzheimer’s disease; however, there wasn’t a way I could communicate these concerns with him. Knowing it would bring nothing but extreme anger directed towards me, I avoided the potential confrontation.

Early stages and diagnosis

As a high achiever who prided himself on perfection in everything he did, my husband began showing aggression in almost every task he attempted. When, as a tax accountant with a calculator built into his head, he began to show signs of math disability, I knew my concerns were valid.

I noticed he began to struggle with even the simplest math, such as computing the tip for our dinner (the carryover of a number became the first of many affirmations that something was seriously amiss). He questioned the probability of having Alzheimer’s, but assured himself that it wasn’t possible, since it didn’t run in the family. As we discussed his issues with math that clued us in to something being seriously wrong, he shared with me that he’d voiced his concerns to our internist, who had assured him it was nothing more than age-related issues. I offered to attend his next checkup appointment.

“What difference will that make?” he replied to me. This only further proved to me that the thought that something might be wrong was taking an extreme mental toll on my husband, who had only taken one sick day in his entire 30-year career.

At the internist appointment, again his concerns were attributed to age.  Already my husband was losing the ability to find the correct words to describe what was happening.  I then shared the noticeable math disability associated with a man whose career was based on numbers.  I could sense the instant realization this needed to be taken seriously, and he proceeded with a sense of urgency.

Referral to a neurologist led to a brain MRI and neuropsychological assessment, and the worst of our fears were confirmed.  While dementia is a symptom, Alzheimer’s is a disease, and my husband had it.

Acceptance

Nearly two years of anger-related denial ensued after the diagnosis. No one was supposed to know; it was to be his secret. Our secret.  However, by this time any one that was around him knew something was terribly wrong, and that Alzheimer’s had reared its ugly head.

The turning point was when I desperately asked his younger brother to fly in from Wisconsin to Dallas as I was completely overwhelmed and needed a mental break.  During this visit he shared, with much difficulty and tears, the diagnosis with his brother.

The ability for him to verbally acknowledge that this cruel disease was ravaging his body seemed to bring peace to his mind.  Now we could move forward, taking baby steps towards preparing for what lay ahead.

Emotional support

No one is prepared for the upheaval this disease will cause in their lives.  None of the caregivers in my weekly support group feel we cope well at all.  All feel guilty that we aren’t doing better.  It’s within this small united group that we lean on each other through tears and laughter, hugs and nods of affirmation, sharing the good, bad and the ugly.  And often it gets very ugly.  It can be an emotional one-and-a-half hours but we leave having shared lessons learned with others who “get it.” Some of us have utilized the Alzheimer’s Association 24/7 Helpline which is available all day, every day for information and support. (1.800.272.3900)

This wasn’t on my “bucket list.”  None of us expect to be caring for someone with childlike behavior at this stage in our lives.  For me it’s as if I am responsible for a 3-year-old.  Are his shoes tied? Is his hair combed?  Are his hearing aids in and working? Is the seat belt on? Did he drink enough water? I’m his voice. Every day I question my level of patience and understanding, accepting that the disease is the cause, not the person.  Friends tell me that I have incredible patience, but I don’t think I do.

Surviving

Behavior varies from one day to the next — normal adult functioning goes “backwards.” I’m learning to be flexible and resilient. Things change quickly; what he could easily do one day becomes impossible the next.  It’s learning to “be slick” in explanations and requests: you can’t reason with someone who can’t reason.  Offering incentives, such as the promise of ice cream, works well as a diversion. As caregivers we often joke that ice cream is the answer to everything.

It is saying “goodbye” without leaving. It is an ambiguous loss; he’s physically here, but not mentally or emotionally present in the same way as before. You are alone even though he is standing next to you.  How lonely it is to be alone and yet bound to a man that has become unknowable.  It’s living in a one-sided world, his world.

There isn’t any “me” time.  There is a loss of time for my own self-care.  It is feeling isolated.  People ask me “how are you doing?”, but there isn’t any appropriate answer to that question.  I’m reminded often of how I need to take care of myself, but as a caregiver, that’s much easier said than done.

Editor’s Note: June is Alzheimer’s & Brain Awareness Month. During the month of June, the Alzheimer’s Association asks people around the world to take the Purple Pledge and use their brains to fight Alzheimer’s disease. Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.  Find out more at: http://www.alz.org/