The Hardest Things — Withdrawal

On the list of issues caregivers find hardest to deal with, withdrawal is one of the most challenging. If a loved one begins a sentence and suddenly finds she can’t come up with a word she needs, she’ll probably hesitate to speak up next time. If she asks a question and is told she’s already been given the information she wants, many times in fact, she may decide to live in ignorance rather than ask questions. When she sees a familiar face in a family gathering but can’t identify the person by name, much less relationship, it’s easy to understand why she might retire to a corner.


Because it’s so easy to imagine why someone with Alzheimer’s would shrink from social interaction, it’s difficult, at least at first, to see how to keep them connected to family and friends.

One of the first things I learned as a caregiver had to do with this very issue. Soon after my mother began displaying symptoms of dementia, experience convinced me that keeping her as involved as possible in the current moment was beneficial. Her mood was more stable and her mind less confused when we kept her attention focused on the activity around her. But I watched her interact less and less day by day.

So what can we do to keep our loved ones “present” in our lives – and their own – for as long as possible? Here are some suggestions.

Talk to – not around – your loved one.   As Mom lost the ability to carry on conversation, I realized Dad and I were prone to talk around her. Sometimes, eyebrows raised, she leaned forward in her chair, looking at us, smiling broadly when she caught someone’s eye. I thought she might need something, but when I asked she shook her head. Did she have something to say? No. She kept smiling but said nothing.

I tried to remember for her: what did her conversations look like? Before Alzheimer’s, a wink, taps on my knee under the table, and “secrets” whispered in my ear were trademark facets of a conversation with Mom. So as Dad and I talked, I smiled at her, winked, and sometimes whispered comments to her. And it worked, at least sometimes. She stayed with us instead of retreating to her couch. She smiled when we smiled, frowned when our voices got more serious, and sometimes even interjected a comment.

Talk simply.   In the middle of a conversation with Dad on the economy, I’d take a break to ask Mom a simple question, like “Do you like my earrings?” Sometimes she answered. But even if she didn’t, I continued to talk directly – and only – to her. “I wasn’t sure they’d go with this color, but I think they’re okay, don’t you?” I learned not to say too much at one time; Mom tended to lose track and get nervous. I also learned to brace myself for her sometimes unkind or critical replies. But often such an interruption to my talk with Dad reaped sweet rewards: a smile, maybe a pat on the hand, sometimes even that “connected” look in her eyes.

talk directly

As far as possible, stick with the familiar.   The more familiar the surroundings, the people, the activity, the more comfortable your loved one will be. For Mom, being at home eating a meal with Dad, and maybe my sister and me and our husbands, was clearly easiest for Mom to enjoy. Eating a meal with me and Dad at the super-center was good, too. Mom’s comfort didn’t extend far beyond those boundaries.

Pets are good.   If you don’t have a pet, the onset of Alzheimer’s probably isn’t the best time to get one. But if your family already includes one, you probably know what a help they can be. My parents had Charley-Dog, a usually scruffy but sometimes quite handsome silver miniature poodle. Charley was a sweet constant in Mom’s days.

kitten  man with pet

He offered warmth and affection without making any demands on her memory or requiring any cooperation from her. He could make her smile when nothing else worked. Even when she refused to speak to me and Dad, Mom could always interact with Charley.

And keep in mind that even if your pet makes no noise and eats no food, it still offers your loved one unconditional love.stuffed pet

If someone lives long enough with Alzheimer’s, their virtually complete withdrawal from the world around them is inevitable. But there are ways to keep them “with us” longer. Yes, in this area as in most issues associated with Alzheimer’s, we’ll be operating on a trial and error basis: maybe this way will work, maybe not; maybe it won’t this time, but it might next time. Still, in my experience, the effort is well worth the expenditure of time and creativity. I strongly believe that the chance to express herself in an easy way, with a nod or a yes or no answer, let Mom feel some power. I think it helped her maintain her place in the family.

Though I have fallen, I will rise.
Though I sit in darkness, the LORD will be my light (Micah 7:8 NIV).

You are our strength, Lord. You show us the way when all seems lost. You keep us trying when we might give up. Bless our loved ones, Lord, and inspire and enlighten our efforts to help them.



The Hardest Things — Mood Swings

The next item on our list of the hardest things for Alzheimer’s caregivers to deal with: mood swings.

ok couple

Though in the beginning stages of Alzheimer’s there are good days and difficult days, as the disease progresses, the good times may shorten to hours. In one day, those with Alzheimer’s may experience occasions when their minds function well, interrupted by periods when they’re ambushed by symptoms like confusion, anxiety, or inability to find words. dadson

Our loved ones feel the shocks again and again: being told their questions have been asked and answered many times already; finding themselves unable to balance a checkbook or follow a recipe; hesitating with a telephone or garage opener in their hands because the device doesn’t look familiar any more.

Alzheimer’s doesn’t fire a warning shot. It just attacks.

It’s no wonder, then, that our loved ones’ moods fluctuate, even in the earliest stages. The fear aroused by the onslaught of symptoms, the relief when symptoms go away—as sensitive as caregivers are to those feelings, the people we care for are immensely more so.

So…how to help them through mood swings? Here are four strategies.

1. Talk to them.
Early in the disease, our loved ones can tell us, more or less, how they’re feeling and why. Whether they choose to or not is a separate question. But even if they don’t, I believe it helps to talk to them.confusion woman And the best help we can give them is truth. Positive, affirming truth—it will help your loved one and you, too. You may or may not want to talk specifically about Alzheimer’s, but you surely can reassure them with matter-of-fact statements like:
• Yes, you get confused but I’m here to help you.
• I want to be here; I want to help you.
• You aren’t alone. We’re a team.
• We’ll be fine.
I found my mother’s reactions to those assurances usually matched the tone I used when I spoke. If my voice conveyed sadness or fear about the situation, I think she felt her fear or anger being validated. But if I spoke simply, and said the words as if they had always been the facts of our relationship, she caught my calm.

2. Agree with them.
It’s never beneficial to argue with someone who has Alzheimer’s. Our words won’t make our loved ones disbelieve their reality: they are certain the bath water is too hot, sure the dog ran away, positive someone stole the car. Instead of telling them they’re wrong, we do better to agree with them.

3. Demonstrate to them, in the most visible way possible, that we accept their reality. In other words, whether it’s perceived or real, fix the problem.
“Well, Mom, no wonder you’re upset. Let me test this water again/see what I can do about Charley-Dog/go check on the car.” Then do it. Stick your hand in the water and turn on the cold tap, even if only for a second. Go find the dog; bring him into the room, if necessary. Go outside to check on the car. When you return, you can say the absolute truth: things are okay.

4. Use distractions to capture their attention and direct it elsewhere.
As the disease progresses, the causes of change in mood won’t be as clear or reasonable. Distractions—maybe a new task, caring for a pet, food, a walk—may help to ease our loved ones away from the distractionextremes of negative moods. Use your imagination. You’re the best judge of what might calm frayed emotions or attract your loved one’s attention sufficiently to dispel bad feelings.

Two important notes:
If you don’t already have a pet at the onset of Alzheimer’s, this may not be a good time to get one. Things our loved ones perceive as new or different can cause them even more anxiety.
It’s important to keep the doctor aware of changes in mood and emotions. Depression is not uncommon in older adults, and it can add immeasurably to the challenges of Alzheimer’s. Moreover, depression can often be treated, giving you and your loved one better days and more of them.

If we were talking about a textbook patient, perhaps we could more readily think of ways to calm the fear or defuse the frustration. But these are people we know and love. Their pain and fear become ours, and sometimes we find ourselves in the swing next to them, flying forward with optimism, then backward to despair.

And of course we must bear in mind that what worked last time may not work this time. But, with the resilience of a caregiver, right after we accept that fact, we must insist that it just might work next time.

talk to them

Resilience. As dementia steals it from those we care for, we must stockpile it. We have to develop more and more of it, enough to fight the monster and keep our loved ones living well the life they have.

Though I walk in the midst of trouble, You will revive me… (Ps. 138:7 NKJ).

Lord, we know You are always here. Help us to be aware, not only of Your presence, but of Your very real assistance as we fight for the ones we love. May we be sensitive to Your promptings, knowing that You are able to keep them safe, to keep them living in the best ways possible, in spite of the cruelties of Alzheimer’s.