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 .

 

Tips for Alzheimer’s Caregivers

Tips for Easing the Life of Someone with Alzheimer’s

By Shelly Beach, Author and Caregiving Expert

 

Most 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.

  • 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 set up a paint studio.

  • 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 are part of a group. If Mom folded the laundry wrong, thank her and do it over later when she can’t see you. If Dad cleaned the bathroom poorly, thank him with a smile and sincere tone and finish the job later, when he’s not around.

  • Let your loved one feel useful.

    Depression often occurs in the early stages of Alzheimer’s. Experts estimate that up to 40% of those with Alzheimer’s struggle with depression. 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.

  • Never argue. Always agree and meet them where they are.

    Join them in the moment, in their reality, when you talk to them, especially when answering 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 and watch TV while we watch for him?” Rather than being a lie, this kind of answer diverts and redirects. It does not engage you and your loved one in an argument or you repeatedly answering that Uncle George is dead.  Adults with Alzheimer’s have lost adult reasoning and live in a hazy world, stripped of the ability to recognize and understand reality. Telling them the “truth” is often cruel and serves no purpose.

  • Give simple instructions.

    Offer no more than three options, and be sure than all of the options are appropriate. If you have a preferred option, list it last because the last option is the most likely to be chosen.

  • 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.

  • 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 crowded waiting rooms. 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 became combative. When I took her to the doctor, we were taken directly to the exam room to wait (simple solution). And I scheduled appointments and activities for her before noon to minimize her frustration.

  • 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, or gardening. Sensory activities that calm your loved one should be a regular part of their routine. Learn what they enjoy: massage, foot rub, soft fabrics and blankets, a doll or stuffed animal, or something else.

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? Did they 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.

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.

 

 

MS Awareness: What You Need to Know about MS Symptoms

Many of you know that I was diagnosed with relapsing-remitting multiple sclerosis (MS) in 2016. However, I’d struggled with demylenating brain lesions since 1999–nearly 15 years.

One of the greatest frustrations with MS is how hard it can be to diagnose it correctly. It often mimics other diseases, and people can become frustrated with a series of well-intended but wrong diagnoses (lupus, stroke, inner ear problems, other neurological diseases, Lyme disease, etc.).

The following videos are helpful in identifying common and lesser known symptoms of MS.

What to Do If You Think You or Someone You Love May Have MS

If you or someone you love is experiencing symptoms of MS, see a doctor who can assess your symptoms and recommend a neurologist if he or she believes you need further evaluation. If symptoms persist, bring it to the doctor’s attention again.

It’s important to understand that it may take time and numerous tests to get a clear diagnosis of multiple sclerosis. Doctors often use a tem called clinically isolated syndrome when someone has an experience or doctors discover a finding that indicates multiple sclerosis but does not yet meet diagnostic criteria. Doctors may also use the term possible multiple sclerosis.

Track any symptoms you may be having. Be sure to include dates. Keep a journal of the onset of any new symptoms that may have a neurological cause. With MS, everyone is different, but early MS symptoms included dizziness, vomiting, hearing problems, vision problems, a facial droop, and difficulty walking. I also had neuropathic pain in my legs and feet. The first doctors who saw me thought I had inner ear problems and Bell’s palsy or had had a slight stroke. Also, keep a record of test results.

Take someone with you to important appointments for support. Important appointments may be different for you than for me. Any appointment when I thought my doctor might confirm a diagnosis was an important appointment for me. I couldn’t trust myself to absorb information clearly and objectively. People respond to crucial information differently. It’s helpful to have someone else listening if we need a moment to absorb the idea of medication or injections or a change in diet or lifestyle.

Share your MS story with us. We love to hear from you.

For more information and support, visit the National MS Society.

 

What Is MS: Multiple Sclerosis Awareness

Photo Credit: Pixabay

 

Many of you know that I was recently diagnosed with the relapsing-remitting form of multiple sclerosis (MS). My diagnosis came after a life-threatening appearance of a demylenating lesion in my brain stem (specifically the pons region of my brain stem) in 1999. This was followed by more than ten years where I experienced a number of bizarre, seemingly unrelated symptoms.

Although I visited a number of neurologists and other physicians, all but one seemed to find my symptoms unrelated. Several times I was told unequivocally by neurologists that I did NOT have MS. Over those years, my husband and I moved several times, and I couldn’t any establish continuity with any doctor long enough to make sense of my history of dizziness, falling down, headaches, choking, foot cramps, finger tremors, hearing loss, nausea, and a changing gait.

Then in late 2014, I developed additional neurological symptoms and was ordered to undergo a brain biopsy of a new large lesion that had appeared in and around the area of my brain stem. The neurosurgeon was confident it was a glioma, considered to be an early form of cancer. The biopsy required a crainiotomy and resection (p. 8) , which was an additional challenge to my neurological system.

Why MS is Often Misdiagnosed
My situation is not unique. Many disorders share symptoms with MS, making diagnosis difficult. Those disorders include

Lupus: can cause muscle pain, joint swelling, fatigue, butterfly-shaped rash across the cheeks, and headaches
Lyme disease: fatigue, fever, headaches, and muscle and joint aches
Stroke: loss of vision; loss of feeling in the limbs, usually on one side of the body; difficulty walking; and difficulty speaking
Migraine: intense pain; throbbing; sensitivity to light, sounds, or smells; nausea and vomiting; blurred vision; and lightheadedness and fainting
Fibromyalgia: headaches, joint and muscle pain, numbness and tingling of extremities, memory problems, and fatigue
Conversion and psychogenic disorders: conditions in which psychological stress is converted into a physical problem — such as blindness or paralysis — for which no medical cause can be found
Sjogren’s disorder: dry eyes, dry mouth, fatigue, and musculoskeletal pain
Vasculitis: joint pain, blurred vision, and numbness, tingling, and weakness in the limbs
Myasthenia gravis: drooping eyelids, double vision, difficulty with walking, speaking, chewing, and swallowing
Sarcoidosis: including fatigue and decreased vision
Vitamin B-12 deficiency: fatigue, mental confusion, and numbness and tingling in the hands and feet
Acute disseminated encephalomyelitis (ADEM): fever, fatigue, headache, nausea, vomiting, vision loss, and difficulty walking
The National MS Society has created the following short video. It gives a simple explanation of what happens in a person’s body when they live with MS and helps us understand why the disease can be so difficult to diagnose, since MS influences every function of the brain, and therefore, the body.

The video helped me understand that because one of my largest lesions damaged the pons area of my brain, it makes sense that my breathing, swallowing, taste, sleeping, vision, hearing, balance, and walking have changed.

WHAT IS MS?

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