Grieving Lost Minds: Go Purple for Alzheimer’s and Brain Awareness Month

Have you lost your mind?” For most it’s a rhetorical question, but for 47 million people, the answer is a tragic yes.

I’m not talking about “losing your mind” in heated moments when stress clutters thinking or when you’ve reacted rashly during a brief lapse in judgement.

I’m also not talking about the fog of grief that messes with your mind after loved ones die (although as a new widow I felt I had lost it).

I’m talking about dementia, a general term for impaired thinking caused by brain damage — dead brain cells. Whether dementia patients suffer because of injury, illness or age, they have literally lost parts of their minds. And that loss inflicts a unique grief.

I’ve written and rewritten this post for two weeks because, as much as I wanted to put the information out there, the topic is too close to home for me.  (More on that later.)

According to the Alzheimer’s Association, June is “Alzheimer’s and Brain Awareness Month,” and purple is its color.  You can find more information, including facts and ways you can help, by visiting their website here:
http://alz.org/abam/

Global facts and national statistics are important, but the devastation of dementia  is personal. It erodes people of every age, and it damages the health and well-being of patients’ families, too.

The grief and frustration of dementia come from living with two (or more) symptoms of life-impeding mental deterioration:

  • short- or long-term memory loss
  • illogical thinking or diminished reasoning
  • skewed sensory perception
  • unfocused attention
  • mangled communication

In many cases, patients recognize their own decline and grieve what they know they’ve lost. Let them know you recognize areas of cognition they still have.

Let them know you will “be there” to step in with them in whatever areas they need help in.

Let them know they can count on your friendship.

Other sufferers don’t recognize their own impairment and may resent the necessity of being cared for by others.  Caretakers need as much support as the patients.

I did.

My familiarity with “brain awareness” stems from other dementias which afflicted beloved, once-functional minds in my family.

I cared for Mom when breast cancer metastasized into her brain, and I catered to (and placated) her father when age dulled and bent his once razor-sharp mind. I listened as relatives on the other side of the country tended to spouses with mental deterioration from specific illnesses. I worked alongside family (and a wonderful home health aid) in dealing with my almost 95-year-old great-aunt’s diminished mental capacity.

And I endured the 24/7 stresses of my barely middle-aged husband’s mental deterioration.

He was 45 when symptoms appeared. At first, I didn’t realize my hubby’s occasional absent-minded lapses were evolving into debilitating short-term memory loss. One month he was “distracted” while paying bills,  and he mailed checks to company A (in amounts for company B’s invoices) inside envelopes addressed to company C. He returned from work or short errands with our car displaying an increasing number of dings, scrapes, and dents. (I later learned his spatial processing was amiss. More than once he “emptied” large, full trash cans “into” smaller, already full wastebaskets. Not successfully.)

By the time his boss called to express concern, things were worse. If asked to perform simple, familiar tasks in their necessary 1-2-3-4 sequence, my husband would dig right in — beginning with four, but completing it poorly. On good days he might then remember to do the first step (now out-of-order), but items two and three? — not at all.

A few months after that call, my husband began what we both hoped would be temporary medical leave as we sought answers and treatment for these (and other) increasingly bizarre symptoms he displayed. He was 46 when a neurologist, one of many doctors we’d seen, made a casual remark including the phrase, “… aside from your husband’s obvious dementia …”

(If my life had a soundtrack, this is where the record needle would SCREECH.) The voice in my head screamed, WHAT?!

I didn’t hear the rest of the neurologist’s sentence. I had to ask him to repeat it. 

Dementia?! That’s for old people, I’d always thought.

I had a lot to learn, and the school of experience was a harsh teacher.

Here’s what I wish I’d known then about how to support people who do or don’t recognize their own dementia — and how to support their exhausted, emotionally drained caretakers:

  • Give them a break. When one person cares for another round the clock, it gets to be too much. TOO MUCH. A change of face can give a boost to both the patient and the caretaker. Even if the patient is confused by the change in routine, even a brief respite can make a world of difference. Offer to sit with the patient (and show up) so the caretaker can get out and about. Or if health permits, take the patient to the store or out for a walk so the caretaker can tend to self-care or other tasks difficult to do with the patient.
  • Don’t take “no” at face value. Your help is needed, whether it’s asked for or not. I don’t mean for you to bully your friend into accepting the above offers, but be persistent and creative in finding ways to help that your friend can live with. If they won’t let you bring in dinner, send them a gift card (or even just a note of encouragement) in the mail. Do something.
  • It’s not worth fighting over. Patients with brain impairment see the world in illogical ways. Their warped perceptions are as vivid and real to them as yours are to you. Arguing to “make” them see reality is both pointless and cruel; it further upsets and agitates everyone, including those with already confused minds. Humor them whenever possible.

Here’s an oversimplified example I’ve fictionalized (by altering details) from one true situation. The father in this scenario, a retired teacher, is anxious and fidgety. “I don’t want to be late. They’re waiting for me.”

His adult children ask, “Who’s waiting, Dad?”

“I have parent conferences today. I need my students’ files so I can get their grades out.”

Each time the son says, “Dad, you retired ten years ago. You don’t have any students. You don’t have to go anywhere,” his father becomes more agitated.

When the daughter says, “Dad, it’s great that you don’t want to keep anyone waiting. You’re always on time. The parent-teacher conferences are done now. You turned in all the paperwork and grades before break started,” Dad (hopefully) is appeased, at least temporarily.

  • Safety first. Having said what I did about humoring the dementia patient, help the caretaker ensure safe practices. Enlist a doctor, home health aid, trusted friend, or neighbor to take away car keys when judgement or reflexes make driving unsafe. Install safety locks and/or alarms on doors and windows for patients prone to wander at 2:00 a.m. Remove the knobs on the stove in homes where a burner might not be turned off again. Lock up prescriptions for those who may think it’s a new day every time they doze off and take a week’s worth of morning medicines before afternoon.
  • Listen up, and let the tears flow. Crying can offer a healthy release of emotion for both patient and caretaker. The loss of mental function creates ripples of grief as caretakers mourn a myriad of associated losses. Future dreams are abandoned when a loved one’s personality dies bit by bit, changing their dear one into a helpless or demanding “stranger.”
  • Repeat. Whatever support you can offer will be appreciated and will make a difference, but as their loved ones’ ongoing deterioration chisels increasing degrees of independence and personality from them, your friends will need your help again.

And again.

Till death does them part.

Then the caretakers will need your understanding — again — as the permanence of new grief kicks in.

When that happens, don’t tell them how happy they should be their loved one no longer suffers.

Don’t ask if they’re relieved their responsibility is finally done.

No one should be made to express or justify grieving emotions until (or unless) they feel ready to do so. Just be with them in the meanwhile.

#ENDALZ #GOPURPLE

___

Each summer solstice, the Alzheimer’s Association sponsors The Longest Day to raise awareness (and funds). For information on this year’s team-oriented event (June 21), visit
http://act.alz.org/site/TR?fr_id=6650&pg=informational&sid=20684

 

2 thoughts on “Grieving Lost Minds: Go Purple for Alzheimer’s and Brain Awareness Month

  1. This touched me deeply. Thank you for the courage to post it.

    Liked by 1 person

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