Caregiving: Tips to Help Prevent Wandering

© 2017 Shelly Beach

Caregiving Journey

Wandering is a common behavior among those with dementia. People with dementia wander for a variety of reasons, which include

  • Pain
  • Discomfort
  • Agitation
  • Emotional anxiety/fear
  • Memory loss
  • Confusion

 Addressing the root causes of each of the above issues will reduce your loved one’s urge to flee

When someone is uncomfortable, they try to escape cause of their discomfort. When someone doesn’t recognize where they are, they go in search of a place they remember or that feels familiar

If a person is confused and disoriented about where they are, they will search for answers.

 

Ways to Keep Your Loved One Safe:

  • Educate your neighbors and people who are around your loved one.

Let your neighbors that your parent or loved one may wander and to gently stop them, call you to get them, and lead them to safety. Show them a recent picture so that they can identify your loved one.

  • Educate family members and caregivers in a similar fashion.
  • Create a strategy for finding your loved one. Circulate it among family, friends, and close neighbors. For instance, search your home, yard, and call close neighbors and ask them to look in their area. Request a Silver Alert from law enforcement.
  • Use technology, such as GPS watches and other tracking systems.
  • Prepare your home. Consider door alarms and door camouflage (large “stickies” thatlook like bookshelves or other disguise to cover doors). Contact Scott Silknitter at R.O.S. Therapy Systems http://www.rostherapysystems.com .

 

No More Tug-of-War: How to Get Dementia Sufferers to Cooperate

 

It was difficult to watch my mom progress through the various stages of Alzheimer’s disease. Sometimes she was quiet and sedate, and at others she was combative and uncooperative. It didn’t take me long to discover that certain actions, environments, and responses triggered Mom’s agitation. For instance, keeping my voice calm and my expression smiling, even when I felt tense, helped prevent Mom’s anxiety from escalating.

Dementia patients can seem stubborn, obstinate, or lazy. They may appear mean and ornery or like they don’t want to participate in life. But those actions require choice—choices those with dementia struggle to make.

Behavioral changes occur in those with dementia
because the disease process causes brain damage.

People with dementia can’t process information (seeing, hearing, speaking) quickly or the same way they did when they were younger and healthy. They have a desire to express themselves and be engaged, as all humans do. They retain the desire to be productive and relate meaningfully far longer than they have the ability.

It’s important to keep people with dementia engaged and active. There are many reasons to keep loved ones with dementia participating in activities:

  • It gives caregivers a break
  • It can decrease agitation and fear
  • It can decrease wandering, rummaging, and asking repetitive questions
  • It helps those with dementia feel productive

The brain damage from dementia can make it difficult for people

  • to initiate activity.
  • to understand directions.
  • to make choices.

This is because it can take people with dementia up to 60 seconds to process information. This fact is important to remember when gauging simple speech with a loved one living with dementia.

While we can’t changed out loved one’s diagnosis, we can alter the way we relate to them.

Changing how we approach an elder with
dementia can improve their quality of life.

Consider some of the following steps to help make your loved one’s life easier:

  1. Think of the easiest way to explain directions or a process. Break it down into individual steps.
  2. If someone is being uncooperative, try to think from their perspective about what the problem might be.
  3. When possible, modify activities to be easier.
  4. Don’t ask when you can tell. For instance, don’t say, “Do you remember who I am, Dad?” Instead, say, “Hi, Dad. It’s me, Sharon.”
  5. Be sensitive to your tone and facial expression. It’s more important HOW you say something than what you are saying.
  6. If a word upsets them, don’t use it. My mother hated the shower, so I would say, “Come with me, Mom, I need some help,” which I needed. I needed her cooperation.
  7. If someone is frightened, don’t tell them not to be, which doesn’t help. Acknowledge their fear and tell them you will keep them safe and protect them.
  8. DON’T argue and defer to logic. Acknowledge what concerns them (“I know you miss your mother.”) and try to redirect them Let’s wait for her over here. Can you help me fold towels while we wait?”).
  9. People with dementia often respond to the question “Can you help me?”.
  10. Find or create tasks that your elder can help with: sorting laundry, folding towels, vacuuming, dusting, straightening the pantry, setting the table, etc.When possible, have your loved one do tasks with If you’re cooking, as them to chop the eggs (maybe not with a knife) mix the salad ingredients, or snap the green beans.
  11. Give instructions only one step or two at a time.
  12. Set out any items that are needed for a task.
  13. If you are asking your elder to do something, do it with them to demonstrate.
  14. Get them games, puzzles, cards, books, etc. with enlarged and simplified print and visuals. People with dementia seem to be particularly fascinated with children—books with children’s faces, TV shows featuring children, etc.

Recommended activities:

  • sorting silverware
  • dusting
  • looking through photographs
  • coloring
  • walking
  • petting a dog or cat
  • listening to music yard
  • work sorting coins or nuts and bolts
  • washing windows
  • gardening

What have you found helpful? Share it with us here.

 

 

A Day in the Life of MS

dead-battery-1623377_960_720This morning my thermostat batteries died, so of course, I changed them.

No biggie, right? You’d think, but not for me. Not any more.

Ten steps from the living room couch to the thermostat to diagnose problem.
Eight steps to the drawer to get AA batteries.
Nine steps to the thermostat to try to put in new batteries.
Failed effort, due to blurred vision, weak fingers, and trembling legs.
Eight steps back to the drawer to retrieve a screwdriver for battery prying.
Eight hand-on-wall steps back to thermostat to pry with one end of the screwdriver and pound with the other as legs shake like my dryer on the spin cycle.
Eight wobbling steps back to drawer to return screwdriver, accompanied by muttered prayers.
Eight final wobbles back to couch, followed by plop-and-prayer for sleep.

At 8:30am, I’ve completed my first marathon for the day. There will be many more. A trip downstairs to do laundry, gripping the railing and leaning against the wall. Pulling myself back up the stairs carrying small loads of clothes I can manage.  Simple tasks I completed without thought by others exhaust me since being struck by multiple sclerosis (MS). Putting on pajamas or dressing  can seem insurmountable.

But not just for me–for many people who live with chronic illness.

Low Batteries: Fighting Fatigue

Medical experts report that it takes five times the effort for people with multiple sclerosis (MS) to accomplish the things healthy people can do. Put this into perspective by thinking how tired you’d be if you did five day’s work in one day every day for the rest of your life.

You can almost always assume someone with MS or other chronic illnesses are trying to beat back exhaustion. I’m in my pajamas by 6:00pm. I attend evening events very seldom. When I go to church on Sunday, I have a “down” day on Monday. I’m proud when I walk on the treadmill for five minutes. On “down” days I drive to my mailbox to conserve energy for more important things (hey, it’s a long driveway).

fatigue

The Pain of It All: Symptoms

MS symptoms vary widely. I people with MS can lose color in their vision. Their sight can also diminish in other ways. My vision has blurred, making it difficult for me to read and work on my computer, even with a 24″ monitor. Migraines can last for days and weeks. Debilitating neuropathy pain in legs, feet, and hands often escalates at night, along with  ongoing muscle spasms and cramping in legs, feet, and back.

About that Twitch: Neurological Problems

Many patients with MS find the path to diagnosis long and frustrating because symptoms can mimic so many other things: lupus, sarcoidosis, Lyme disease, stroke, and other illnesses. For this reason, other illnesses must be ruled out when making an MS diagnosis.

MS is a neurological disorder that causes the protective myelin covering over the nerves in the brain to deteriorate. The nerves become exposed, which causes lesions (tissue abnormalities), not tumors (cell clusters that grow). Brain lesions multiply over time, causing increasing disruption of brain and, therefore, body function.

My lesions attacked my brain stem. I’ve had two major attacks–the first in 1999 and a relapse in 2014. MS patients seldom return to the same threshold of health after a relapse. My relapses have affected my walking, balance, hearing, vision, swallowing, memory, resilience, and cognitive function.

For instance, I now work use a 24″ computer monitor. I must take breaks every hour to “rest” my brain.  I walk on the treadmill in 5 minute increments, which is my usual max time. I no longer work at my computer beyond lunchtime because of fatigue. I experience frequent and prolonged migraines. My legs and feet cramp continually. I take medication for neuropathy pain in my legs and feet. And like most MS patients, I’m always cold.

Takeaway: Eyes Wide Open

Suffering can bless us with a perspective on others’ pain. It can either bring us into community or isolate us; drive us to bitterness or build our awareness of the sorrow that surrounds us. Chronic illness can gift us with unique sensitivity to those who quietly suffer–not necessarily with illness.

Jesus saw the needs of those who stood at the edge of the crowd, who were unable to push to the front, who could only catch the edge of His robe, or who climbed into trees to see Him. They were all looking for someone who cared enough about them enough to reach out and help, maybe even love them.

Jesus touched unclean bodies. He used the power of His words, His hands, His presence, the hope in His eyes, His wisdom. You may be sick–but you can use your pain to touch someone else. A day in the life of your pain may have given you the gift of words, experiences, the touch of a hand on an arm, of prayers, quiet presence, hope, or encouragement needed by someone else. Are you willing to live with eyes wide open to give to others, even in your illness or pain?

Caring for a Sick Spouse

sick-partner

 

 

For the past forty plus years of our marriage, my husband and I have taken turns being sick and having surgeries. Not long after I married, I came to the realization that my husband would be undergoing knee, ankle, and foot surgeries for the remainder of his life. Dan’s walking abilities would gradually become more and more impaired. This created a hope for us to fulfill certain dreams sooner than later.

This thought intensified when I became critically ill with an undiagnosed neurological disorder in my early forties. Dan became lovingly protective of my health in the ensuing years, especially after my symptoms progressed and I underwent brain surgery. I also became increasingly concerned about Dan’s walking. We often competed over household tasks–who would do which chores so the other wouldn’t have to, both of us secretly doing laundry or shopping before the other had the chance.

I’m not sure who’s done the most caregiving in our marriage, but I can tell you Dan’s done a great job caring for me. I know that when one spouse is caring for the other, it’s easy for caregiving to overtake other priorities in the marriage. Spousal caregiving is tough, and I think that success if found in the small things.

Jimmyand CarolOwensPromo

 

 

  1. Find ways to enjoy each other. Focus on the things your loved one has always been interested in and loved. Read or listen to books about those things. Watch a TV show, movie, or series about them. Research a prominent person in that field. Or you might consider taking a fun online class. Complete a project (genealogy, writing, birdwatching, creating an e-book, or organizing family pictures, etc.
  2. Listen to music and recorded books. This doesn’t take time from your daily route and can also be enjoyable for your loved one. Check your local library for books on CD. Be sure to ask your loved one about their interests so you can come up with mutually chosen titles.
  3. Do things you like separately. Find a favorite spot in a local park, library, museum, or space nearby where you can slip away for refreshment. Spend time with friends at least once a week. Ask some from your family, church, support group, or community to give you the opportunity for respite.
  4. Create “islands” of respite each day. Step out of the house and look at the sky. Keep books in the bathroom and take short reading breaks. Ask friends to stop by and visit for an hour or two so you can walk around the black or take a drive, visit the park or library, a movie, or time to drive some place quiet and enjoy the solitude. Spend ten minutes in your garden (or your neighbor’s).  What refreshes you? Find ways to inject mini-burst of these things into your day.
  5. Find someone to confide in. This may be someone who has cared for their ill spouse or a compassionate, affirming friend. Caring for a spouse can stir feelings of anger and frustration, and husbands and wives can feel like they’re betraying their loved ones by sharing confidences and circumstances that can naturally result from the stress of caregiving.
  6. Call a friend or family member every day. You need connection to the world beyond the walls of your home. Take time to stay connected to close friends and family members. Ask about their lives, interests, and prayer needs. Whenever possible, use Skype or FaceTime. You need to see faces, and people need to lay their eyes on you.
  7. teamwork-294584_960_720Ask for help. You need help–regular breaks, physical, and emotional support. If your spouse has adult siblings, ask for their physical help or financial assistance to hire aides, respite workers, or to secure a respite facility on a scheduled basis. If they refuse, look for someone to assist in mediation–a pastor, counselor, or senior care specialist, or possibly even a lawyer. If you have adult children, ask them to help. Include your church or parish when you ask for assistance. Many churches are able to offer considerable help. And always consult county social workers and the Area Agency on Aging to see what services you qualify for. We were grateful to discover free respite care for our loved ones that allowed us getaway breaks a few times a year.

As much as possible (and it isn’t easy), try to compartmentalize spousal care from your personal time together. Try to preserve time for the two of you to simply enjoy one another. One of my most treasured memories is of watching the light in my mother’s eyes as my dad read his diaries to my mom during the years she lived with Alzheimer’s. Even in the debilitating shadow of Alzheimer’s, couples can share meaningful moments together.

PHOTO CREDIT: 9jaFlave

Tips for Easing the Life of Someone with Alzheimer’s

One Step at a TimeMost people recognize that Alzheimer’s disease causes memory loss. However, it may be more difficult to understand that Alzheimer’s also deeply influences one’s emotions, mental processing, and physical capabilities. As our loved one progresses through the disease, we and other family members and caregivers must begin to focus on helping our loved one live in the moment, because they lose the capability to reason and live beyond the immediate.

Alzheimer’s experts offer a number of recommendations for how to ease the life of someone living with Alzheimer’s or other forms of dementia. These tips are intended to lower agitation, enhance focus and communication, and give your loved one a greater sense of peace and safety. Alzheimer’s can be a terrifying disease; patients live without an awareness of where they are, why they are in a strange place, and who the people around them are.

  1. Keep people with Alzheimer’s active and engaged. Cognitive and sensory stimulation is important for them. Check to see if your community offers adult day care for those with dementia programming. Involve them in simple family chores. Create a small indoor garden for them to tend, or enroll them in a community exercise program for those with dementia.
  2. Focus on process and not results. If your parent does something incorrectly, don’t correct them. If your father begins eating with his fingers, let him. People with dementia need to feel that they are accepted and loved without judgment, and part of a group. If Mom folded the laundry wrong, thank her and do it over later when she can’t see you.
  3. Let your loved one feel useful. Depression often occurs in the early stages of Alzheimer’s. Your loved one is aware of their illness and feels as if they are no longer useful. Allow them to contribute—cooking, simple home repair jobs, helping with shopping or laundry, emptying the dishwasher, etc.
  4. Never argue. Always agree and meet them where they are. Join them in the moment, in their reality, when you respond to their difficult questions. For instance, “I haven’t seen Uncle George (who has been deceased for 7 years), but why don’t we get a snack and sit here for a while and watch for him?” Rather than being a lie, this kind of answer is like responding to a three year-old with an age-appropriate reply. Adults with Alzheimer’s lose adult reasoning and slip away into a hazy world stripped of the ability to see reality. Telling them the “truth” is often cruel and serves no purpose.
  5. Give simple instructions. Offer no more than three options, and be sure than any of the options would be okay. If you have a preferred option, list it last because the last option is the most likely to be chosen.
  6. Never ask, “Do you remember?” Always tell your loved one who you are and what your name is. If you reminisce with them, allow them to contribute information, but don’t ask them questions they may not have answers to. Asking questions only provides an opportunity for frustration. If you want to know what they’d like to have for lunch for instance, offer two or three options at a time.
  7. Avoid things that could be upsetting. For many dementia patients, this means loud crowds, like basketball games, parties, or receptions. For my mother it also meant being in large crowds. Many dementia patients also deal with Sundowning Syndrome, which means that agitation worsens in the late afternoon. My mom’s behavior quickly degraded after 4:00 in the afternoon, and she often showed signs of aggression. The world is a confusing, frightening place for people with dementia, and anger and aggression are natural responses. Imagine not knowing where you are, why you’re there, what you should do, who you’re with, or what’s going to happen to you. Then add physical discomfort.
  8. Learn what soothes. This might be music (hymns, vintage music, boogie, etc.), looking at pictures (children’s faces are often favorites), rocking or snuggling a life-like doll, old TV shows like I Love Lucy, gardening, etc.

It’s also helpful to learn about any events from your loved one’s past: Were they abused? Attacked by a pet or animal? Confined or incarcerated? Suffer prolonged illness? Lose a parent or sibling in childhood? Experience a near drowning? These events could become triggers for fear as their illness progresses.

Our goal as caregivers is to soothe the suffering of Alzheimer’s and dementia. This means doing all we can reasonably do to safeguard our loved ones’ physical, mental, and emotional well-being and to love them as we would want to be loved ourselves.

What tips can you share with us from your caregiving experience?

How to Create Greater Comfort for Your Loved One with Dementia

 Mom and Dad

My Mom and Dad

 

  • Do you really dislike the feeling of water on your face?
  • Do you hate sudden loud noises?
  • Do you, like me, dislike the smell of strong perfume?
  • Does having your feet touched creep you out?

Our senses create our stories.

Life is a sensory experience. We file memories as sights, smells, sounds, sensations, and tastes. Our senses give us the information we need so we know how to react to our environment (how high to step, how far to reach, how to balance, etc.).

As we age, we all develop preferences for certain kinds of sensory information and dislikes for others. We base our habits and preferences based, in part, on this. For instance, you may prefer bright vibrant colors, and your sister may prefer pastels. (Now you know why she painted her house lavender.) But as we age, our sensory efficiency declines, and we become less able to know how to react to our environment. Unfortunately, many caregivers don’t understand the importance of sensory loss in dementia.

Dementia in its many forms shrinks sensory functioning beyond the normal decline of aging.

For instance, you’ll see my mother in the picture above. She was born with severe vision problems and had many corrective eye surgeries over the course of her life. As an adult, her vision was always poor. As she aged, it became worse. With the challenges of Alzheimer’s, life became very confusing for Mom. Although she couldn’t put it into words, we discerned that she had difficulty making sense of her surroundings. Alzheimer’s experts tell us that Alzheimer’s patients often have difficulty interpreting their surroundings and even have hallucinations.

So how can you create a more comfortable life for your loved one with dementia?

Become an expert in reading your loved one’s

verbal and their body language.

What are their likes and dislikes? For instance, I knew my mother feared going from wide spaces into narrow spaces, for instance from the living room down the hallway. Something about wide to narrow or perhaps light to darker appeared frightening to her. She would throw her body backwards and fight moving forward.

  1. Know your loved ones preferences.

Do they prefer a bright environment or dark environment?

Do they find mirrors confusing?

Do certain colors soothe them? Stimulate them?

Do they seek or avoid music, the radio, conversation, and other auditory stimulation, etc.?

Do they enjoy or tolerate touch from those they are close to?

What kind of food do they like and dislike: spicy, sour, salty, sweet, cold, hot, crunchy, chewy, textures? (TIP: Expect these to change over the course of the illness.)

Do they enjoy scents and aromas or avoid them?

Do enjoy feeling textures?

Are they stimulated by books? Music? Children? Dolls or stuffed animals? Gardening? Coloring? Cooking? Singing?

Are they soothed by books? Music? Children? Dolls or stuffed animals? Gardening? Coloring? Cooking? Singing?

What kind of interpersonal contact is most effective with your loved one? (TIP: Tone of voice and eye contact are the two most important elements of communicating with a loved one with dementia. Speak slowly in an even, loving tone, choosing simple words. DON’T ARGUE OR TRY TO REASON. Communicate empathy and try to divert to another activity.

 

2. Create visual contrasts to help increase perception.

If everything in your bathroom is one color, put a contrasting color lid on the toilet seat.

Paint the doors of their bedroom and the bathroom a contrasting color from other doors in the house to help them find their room. (TIP: Those with dementia may increasingly find blues, greens and purples harder to differentiate.)

Paint handrails a contrasting color to walls.

Use plates that contrast with the color of the food.

Avoid dark rugs, which can look like holes in the ground (and also create trip hazards).

Avoid patterned floor coverings and know that striped pavement, square tiles, and changing floor patterns can cause confusion and disorientation, as well as revolving doors, escalators, or fast wheelchair rides.

Above all, love them by investing the time

to truly know them. 

In seemingly insignificant moments we learn to read the intake of breath that unmasks hidden pain. The narrowed  eyes that reveal fear. The knit brow that communicates confusion. As time progresses, your loved one will need you even more to help them see, feel, hear, taste, and touch their world.

Your caregiving will be one of the most loving,

Christlike tasks you will ever accomplish. 

What accommodations have you made for your loved one?

 

Holiday Tips for Alzheimer’s Caregivers

caregiving holiday

The holidays offer an extra level of stress for Alzheimer’s caregivers. The hustle and bustle of the season adds confusion to already challenging caregiving priorities.

The following tips can help minimize anxiety for your loved one with Alzheimer’s:

Minimize rearrangement of furniture to accommodate your Christmas tree and decorations.

Changing physical surroundings for those with dementia can cause confusion. Stacking gifts can create hazards for tripping. Even small decorations can be confused for candy or food and be eaten by someone with dementia. Brightly colored, twinkling lights can also cause confusion.

Keep the number of house guests to a minimum.

People love to help, so don’t be shy about asking friends to sit with your loved one so you can attend a special event. As much as you’d love to have Grandma at a special function, it might not be best for her to attend. Crowds and noise are very difficult for those with Alzheimer’s to handle; the confusion agitates them.

And if the event is in your home, keep the guest list to a minimum for your loved one’s sake.

Alter your loved one’s routine as little as possible.

People with Alzheimer’s thrive on routine. Sundowning is one of the most challenging symptoms of dementia–worsening of cognitive and physical challenges in late afternoon and evening hours. It was always a high priority for me to get my mother home before four in the afternoon. That was the time of day when she became most combative and uncooperative.

We may think our loved one might enjoy an evening Christmas pageant or lovely candlelight service. But the truth is that crowds, noise, lights, unfamiliar faces, and even multiple conversations can overwhelm those with demential and Alzheimer’s. Their brains can no longer handle complex processing.

Make time for simple things.

Plan for down time with your loved one. Read a book together. Sing carols. Enjoy an afternoon of holiday baking–even if it means using store-bought dough.

Make simple ornaments or cards or watch It’s a Wonderful Life and share a bowl of popcorn

Read the Christmas story or use the figures from a creche to talk about the events of the first Christmas.

Christmas will be more meaningful if you take time to slow down and soak in the true significance of love, sacrifice, mercy, and forgiveness.

 

I’d love to hear a favorite Christmas memory about your loved one.