Good Night

As morning problems have to do with getting started, the evening challenge is to wind up the day and get some sleep. Fatigue adds stress in any situation. In an Alzheimer’s household, fatigue can make evenings seem unbearably long.

Dad and I are exhausted, but we can’t rest til Mom is safely in bed.

Mom is tired, but she doesn’t understand how to “fix” that feeling, and is in no mood to cooperate when we try to help her.

Seems we’re all trapped in the dark.

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I concentrate on five strategies to get us all unstuck and tucked in:

1)  Don’t argue with Mom. Agree with her version of reality.

2)  Use actions, not words, to calm her anxieties.

3)  If she refuses to go to bed, be ready to back off and try again.

4)  Old behaviors and routines can help Mom cooperate.

5)  Talk works well as a distraction when I’m maneuvering Mom in a direction she doesn’t want to go.

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 These strategies take time, but they work.

Arguing with Mom—or any Alzheimer’s patient—is worse than pointless. Trying to convince her of what is clear and reasonable to me only increases her frustration and confusion. So when she says she’s afraid a fire might destroy the house during the night, I do not try to convince her that the house is safe. Instead, I agree that a fire in the night would be a problem. Then…

…I take action. Instead of relying on words to convince her the house is safe, I walk through it, every room, “checking it.” Mom sees that I take her fear seriously. Watching me act on her reality helps her accept my words.

If Mom refuses my first suggestion of bedtime, I have two choices. I can use physical strength to make her cooperate, or I can back off and try again later. As I pointed out in the previous post, I always do the latter. For one thing, trying to force Mom to do something would likely get one or both of us hurt. And Mom still wouldn’t be in bed. Waiting a few minutes gives Mom time to forget my earlier request and her earlier refusal. I ask her again, as if for the first time. Sometimes she says yes in relatively short order. But if not, I don’t ask any more. I move on to the next strategy.

Old behaviors and routines can help your loved one cooperate. If you remember a habit your loved one used to engage in, use it to accomplish what needs to be done. For example: my mother used to love to share trivial information with me or my sister that she pointedly refused to tell my father. She enjoyed feeling she knew things he didn’t know. So some evenings when she doesn’t want to go to bed, I coax her into the bathroom on the pretense of telling her something important. I whisper that “Daddy doesn’t need to know this; this is just for you and me.” I’m not sure she understands, but clearly something in her mind reacts to my drama of secrecy, and she accompanies me to the bathroom. Once there, I just talk girl talk – what I should wear to a non-existent party, who’s dating whom in Hollywood – it doesn’t matter as long I keep whispering and giggling. All through the difficult clean-up jobs, the persuasion to change her clothes from the skin out, the washing of hands and face – girl talk.

Talk has another useful purpose. In the evening or at any time of day when you must persuade your loved one to move in a certain direction, non-stop talk can be the distraction you need. In the evening, for example, whether during the trip to the bathroom or from the bathroom to the bed, I could take Mom’s arm and maneuver her with the bulk of my body. If she was inclined to resist, I’d start talking, laughing, asking questions. The non-stop chatter drew her attention away from where we going, and by the time we got there, she had usually forgotten she didn’t want to go.

Finally, the one strategy that applies across the board in caregiving bears repeating here. We must believe. Believe that the day can end sweetly, sleep will come, rest will refresh us all, and – whether through the night or in the light of day – we are never alone. Knowing and believing give us strength, energy, and compassion to pass along to our loved ones. They keep us moving forward.

When we’re tired, Lord, it’s not easy to remember You’re with us. At those times, remind us, please, of evenings in the past when You turned stress to calm and fatigue to peaceful sleep. Those memories give us strength in the present and confidence for the future.

“Come to me, all you who are weary and burdened, and I will give you rest.”

(Matthew 11:28.NIV)

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Good Morning? Yes!

Morning problems, in my experience, have to do with getting started.

Clean clothes

Food and drink

Medications

Those are Mom’s immediate needs when she gets out of bed. The problems arise when she refuses clean clothes, food and drink, and/or medications. If she refuses one, she will often go on to refuse all three.

Two actions are called for on those days:

1) I have to expect that — sooner or later — Mom will cooperate; and

2) I have to step back if she refuses, wait, and try again later as if it were the first time.

Taking those actions always produces positive results for me.

And yes, both are ACTIONS.

Expecting success has to be more than a thought. It must be a conviction: Mom WILL cooperate and she will probably do it right away. That expectation leads me to act in a certain way. Caregivers soon realize that their own stress and anxiety spills over onto their loved ones, and can complicate a good situation or make a difficult one even harder to resolve. Similarly, our expectation of success translated into calm, assured words and movements can influence our loved ones in a positive way. So foreseeing a good outcome lets me be relaxed. I can smile as I take Mom’s arm and lead her to the bathroom.  If she refuses to cooperate right away, my expectation of eventual success prompts me to take additional actions: I watch for signs she’s ready for help; I stay prepared with clothes at hand, food and drink kept warm or cold, medications close by and ready. And expecting success gives me more patience, more energy to keep trying.

Backing away when Mom refuses to let me help is hard in a lot of ways. When she doesn’t want to get clean and dressed, the threat to her health from lack of hygiene is bad enough. But messes of all kinds can result from Mom not being clean. When she goes without food and drink after having nothing during the night, her physical/mental/emotional condition can decline quickly.  And the need to take medication on at least a fairly regular schedule is critically important. So backing away when Mom says “No!” is very hard to do. But what is the choice? I never use my physical strength to get Mom to do something unless she’s in immediate danger. I can clean the messes later. And if I become concerned that lack of food, drink, or medication has gone on too long, I can call the doctor for help and advice. So I back away.

And wait. But again — this is an active waiting. I watch for a change in Mom’s expression, a look in my direction, restless movement, maybe shuffling her feet. I listen for a word, a sound. Those can be signals that Mom’s “in a different place” and might feel more agreeable. The more important point is that I let some time pass, usually just a few minutes.

Then, even if I see no outward indication of any change,  I try again. Maybe I use different words. Maybe I approach the task differently. Or maybe I do things exactly the same way as last time. And maybe Mom will say yes this time, maybe not. But my actions and attitude are based on my absolute conviction that she will cooperate. Probably soon.

Finally, when I try again, I make sure to do it as though this is the first time today we’ve started this activity. I say nothing about Mom having refused earlier. I make no mention of time or being late. We’re simply doing what we do every day: getting dressed and eating and taking medications.

These actions work for me on every difficult morning. Of course they also apply to other situations at other times of day, but mornings are special, especially for caregivers. Our loved ones likely won’t remember in the afternoon or evening whether their morning went smoothly or not. But beginning the day well is a real boost for us caregivers.

Father, You have promised that when I call, You will hear and answer. I experience the truth of that promise daily.Thank You for allowing me to trust You completely.

In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly  (Psalm 5:3  NIV).

Problem Times, Problem Behaviors

Most caregivers will tell you that some times of day and certain activities are consistently more challenging than others. Maybe your loved one experiences “sundowning,” the name given to the noticeable increase in behavioral problems beginning in the evening and sometimes continuing into the night. Maybe your loved one balks at taking medication or getting ready for an appointment. The most difficult times for my mom were right after she awakened in the morning and bedtime at the end of the day. Bath time was also a struggle.

Over the next few weeks, you’ll find here detailed descriptions of strategies that worked for me and other caregivers in those consistently challenging areas.

For now, here are two general tips that helped me in almost any difficult situation.

  • Don’t make it a big deal.

I found that the less importance I attached to an activity, the more likely it was Mom would cooperate. So I worked hard to be calm and cool. In order to avoid passing my own tension on to her, I practiced telling myself “This will go well. Either it will go well or it really doesn’t need to be done right now.” A doctor’s appointment could be rescheduled. Medication could be a little late and if Mom missed a dose entirely, I could call the doctor for advice. The main thing I had to understand is that I couldn’t make Mom do anything, so if she flatly refused, it had to be okay, at least for the time being.

  • Give it time; try again later.

Give yourself permission to figure out how to handle the situation…later. Trust yourself to know when something can be postponed and when it can’t. If the activity can wait or the problem behavior isn’t dangerous, simply waiting and trying again after a few minutes often leads to success. Sometimes it takes trying again, and again, and again. But I can tell you that, in almost every instance, Mom eventually cooperated with what we had to do.

The exception, of course, is when the activity affects someone’s physical safety. If your loved one won’t come inside in bad weather, for example, or threatens any kind of physical harm to her/himself or to you, you must be prepared to get immediate help, by calling on friends or family or by calling 911.

If you want more tips right away, here are three sources:

  • The 24/7 helpline for the Alzheimer’s Association is 1.800.272.3900.
  • Their website (www.alz.org) offers advice on how to handle daily activities and certain difficult behaviors.
  • And for more strategies that worked for me, click on “Tips and Strategies for Caregivers” above.

Father, please remind me that sometimes the best means of persuasion is quiet waiting. May I be aware of Your presence, Your calm, and Your power working in me and through me at all times. Thank You for Your faithful guidance and help.

This is what the Sovereign Lord…says: “…In quietness and trust is your strength….”  (Isaiah 30:15   NIV)

Like Riding A Bike

Let’s think of caregiving as a bicycle.

What?

Sure we can! Why not?

What’s the most important part of a bicycle? What makes it go? The pedals? The wheels? Yes, they’re important, but they can’t take the bike anywhere on their own. The person sitting on the seat pushing those pedals and controlling the handlebars is surely the most essential part of making the bicycle move, and move in a good direction.

On our caregiving bike, that person is you. And I. The caregivers. Within us is the essential energy required to push the pedals and drive the bike. Each of us has it: a spirit rooted in love. Without it we wouldn’t be here traveling the caregiving road. It takes a lot of love to navigate the bumps and ruts and dips and potholes of this narrow, winding road.

It also takes good, strong tires. The best names to see going round and round on caregiving tires are Patience and Creativity. The One who created and manufactures those tires guarantees them for life. If we sense them growing flat or weak as we pedal forward, a mere thought will summon Help—more air and better tread for traction and wearability.

Patience. Creativity. Which one goes in back to push? Which goes in front to steer? After we’ve ridden for a while, we realize we don’t need to worry about that. With a spirit rooted in love operating the pedals and handlebars, we’ll get where we need to go.

And how about our loved ones? Where do they ride?

Sometimes in front, in the basket. Yes! The Manufacturer designed an infinitely flexible basket, made to hold our loved ones safely while helping them enjoy all the sights and sounds and sensations along the way: Cars and buses and other cyclists making their way down the road, people talking and birds singing, the brush of the wind and the warmth of sunshine.

On the grey days, even stormy ones, our loved ones ride in little trailers attached to the back of our bikes. Like a cocoon on wheels, each trailer keeps its precious cargo as comfortable as can be on our trip down the Alzheimer’s road. With spirits rooted in love, we go on pedaling through the weather, keeping watch on our loved ones by means of the I & I (Insight and Instinct) mirror mounted on our handlebars. Our words of reassurance are carried back to them on a breeze. We can even sing and know that—maybe not today, but someday—our loved ones will recognize love in the melody.

So come on, Caregivers! Let’s strap on our helmets and fasten our goggles and get on the road! We can’t predict what kind of terrain we’ll travel through today, but we know we can trust the One who has equipped us for the journey.

Lord, we thank You that we never travel alone. You go before us, behind us, on our right, on our left, above us, below us, within us, always. Help us to trust You more with every mile.

“Now may the God of peace…equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be glory for ever and ever. Amen.”   (Hebrews 13:20, 21   NKJV)