How to Deal With the 3 Most Painful Situations Alzheimer’s Caregivers May Face

Note: The following article appears in the book by Marie Marley, PhD, and Daniel C. Potts, MD, FAAN, entitled “Finding Joy in Alzheimer’s: New Hope for Caregivers.”

There are so many difficult situations you will face as a caregiver for a person living with Alzheimer’s. Some are more difficult to accept than others. Here are three that are among the most painful of all:

1. If the person no longer recognizes you

2. If the person loses the ability to talk

3. If it’s time to engage hospice care services

Let’s look at each of these separately.

If the Person No Longer Recognizes You

If you have a loved one who has Alzheimer’s, you dread the day when that person may no longer recognize you. You may think that would be the worst fate possible. When your loved one doesn’t recognize you it’s as though you no longer exist in their world. It can cause searing pain. But ultimately this is a situation that only hurts you. It typically doesn’t bother the person with the disease. And that’s what matters.

If the person is living in a care facility, you may not see any reason to keep visiting. You may figure it doesn’t matter. But there are several reasons why continuing to visit does matter, including the following:

1. The person may in fact recognize you but just not be able to express it
2. The person may remember how often you visit even if they no longer remember their relationship with you
3. The person may enjoy being visited even if he or she doesn’t know precisely who you are
4. If the person enjoys your visit you may feel gratified you’ve given him or her pleasure.

If the Person Loses the Ability to Talk

If the person who has Alzheimer’s no longer talks you may feel that you can’t communicate with him or her any more. But nothing could be further from the truth. There are several forms of nonverbal communication that can help you reach the person, sometimes even on a deep level. Three of the most important ones are:

1. Touch
2. Smiling
3. 3) Using visual cues.

One of the ladies with Alzheimer’s I volunteer to visit every week was named Sue. Sue didn’t talk so I just sat beside her, held her hand and talked to her softly, not expecting – and not getting – any verbal response. I had no idea if she was even aware of my presence.

But then one day when I was holding her hand she reached up with her other hand and began caressing my arm. That’s when I knew I had connected with her, and she was returning my affection. Yes, I’d found a way to communicate with her even without her saying a word.

If It’s Time to Engage Hospice Care Services

This is the last difficult and perhaps most painful experience you may have with your loved one. If you need to involve hospice in his or her care, it can be extremely difficult and even depressing. You may dwell on dark thoughts of the person’s impending death.

Keep in mind, however, that your loved one is in many cases not aware that death is approaching. Thus, you are the one suffering. Your loved one may be oblivious and enjoy life just as much as before. Your loved one may also relish the extra attention received by the hospice personnel. If you continue to have a problem with it, you may want to consider getting professional counseling to help you cope.

Here’s my personal experience with finding a way to accept this situation. First of all, as I recount in my book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy, the very word “hospice” scared me. I felt as if ordering hospice care for my life partner, Ed, would be tantamount to signing his death warrant. I knew that was ridiculous, but that’s how I felt. I delayed the call for weeks, telling myself he didn’t need it quite yet. The truth was that I wasn’t able to deal with it quite yet.

I finally consulted a colleague at the University of Cincinnati, Dr. Doug Smucker, who was specialized in end-of-life care. After answering all of my questions, Doug looked at me kindly and said, “You know, Marie, the real question for the caregiver is how to help the person have the highest possible quality of life in the time that is remaining.”

That completely changed my thinking about the situation. It gave me a new and positive goal – to bring Ed as much happiness as possible. There was something I could do. After that talk I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death, we were able to have a beautiful, pleasurable months-long conclusion of our long life together.

So if you find yourself faced with one or more of the above situations, do your best to accept it and move on. This will not be easy, and not everyone will be able to accomplish it. But if you can it will improve your state of mind considerably and bring you peace.

ABOUT THE AUTHOR: Marie Marley is co-author of Finding Joy in Alzheimer’s: New Hope for Caregivers and author of the award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. She also hosts her own blog and publishes a twice-monthly newsletter dealing for people caring for a loved one with Alzheimer’s. The newsletter and blog can be accessed through her website (ComeBackEarlyToday.com), which contains a wealth of helpful information for Alzheimer’s caregivers. Marie is the author of hundreds of articles on Alzheimer’s caregiving and is a regular contributor to the Huffington Post and the Alzheimer’s Reading Room.