Is Your Loved One’s Care Facility Safe?

Photo Credit: Pixabay

The Problem

Across America, a growing number of elderly people residing in nursing homes have died from COVID-19 exposure since the shutdown was ordered. In New York alone, 5,433 elderly long-term care facility residents were reported dead. This news came after Governor Cuomo oreded such facilities to admit COVID-19 patients. This bears the question for any of us who have loved ones in care facilities: “Are My Elderly Loved Ones Safe?” 

Many elder care facilities with track records of poor care across the nation are now operating with much less oversight because of COVID-19. The pandemic has added to pre-existing problems: financial need, understaffing (employees quitting or becoming ill), and poorly paid employees. 

• More than 40% of California’s COVID-19-related deaths are estimated to come from nursing homes. 
• 43% of US COVID deaths occur in nursing homes and assisted living facilities. 
• While just 11 percent of the country’s cases have occurred in long-term care facilities, deaths related to Covid-19 in these facilities account for more than a third of the country’s pandemic fatalities.

• In 14 states, the number of residents and workers who have died account for more than half of all deaths from the virus. Nursing homes aren’t getting commensurate funds, resources, or federal support to compensate for COVID’s devastation. “Nursing-home residents aren’t getting half of our resources or half of our attention, yet they account for roughly half the deaths,” stated David Grabowski. This, he said, reveals—or maybe reinforces—a devastating truism about American society: “We don’t value their lives [the elderly’s] as much as other people’s.

Complicating Factors

• On March 23, the federal government ordered state inspectors to halt in-depth annual inspections to minimize the spread of the virus and focus on hot spots and infection control. 
• Long-term care ombudsmen, who normally field complaints and advocate for nursing home residents’ needs, were told to stop entering all facilities beginning March 16.
• With limited exceptions, family members who provide emotional and physical support as well as careful oversight, haven’t been inside facilities for even longer.  

This leaves care facility residents who are already extremely vulnerable to abuse and neglect — as well as to the ravages of the coronavirus — effectively cut off from the people tasked with protecting them, advocates say.

SO HOW CAN YOU KEEP YOUR LOVED ONE SAFE?

1. Gather Personal Recommendations.
   Ask friends, pastors, doctors, nurses, therapists, frequent visitors, etc., for recommendations. 
   
2. Conduct research. 
   
   Check for complaints and violations by going to the Nursing Home Compare website provided by Medicare. 
   
   Contact the Long-Term Care Ombudsman’s office in your area. The mission of this agency, which operates under the Older Americans Act, is to protect the rights and well-being of people who reside in long-term care facilities, including skilled nursing facilities. The Ombudsman’s office also records information related to quality of care, inspections, violations of standards and regulations, as well as citations, fines, and follow-up resolution of areas of concern. 
   
   ProPublica also offers an online tool to investigate the inspection/violation records of long term care facilities. This tool lists skilled nursing facilities in each state, allowing healthcare consumers to compare the records of facilities in their area quickly and easily.
   
3. Visit as often as you can.
   
   Ask questions. How often is your loved one bathed? Do they have complaints of being ignored? What is the staff to resident ratio? Is staff provided with protective gear? Are residents being tested for COVID-19, and are state protocols being followed? Ask to see records for verification. Ask about the facility’s means of communication with family regarding COVID updates and general health information. Talk to county Health Department officials who track COVID numbers at your loved one’s facilities.
   
   Observe. Is the facility clean? Are the residents clean? Are caretakers clean? Can you smell odors? Do residents look happy. How is food handled? Are employees wearing masks and gloves and protecting residents from exposure? What is your loved one’s general mental and physical health? Are they involved with social activities?
   
   If you can’t be physically present, ask someone to be your eyes and ears for you.

Arming ourselves with information and taking proactive steps is the best way to protect loved ones who are incapable of advocating for themselves. Our vigilance on their behalf can be one of our greatest gifts of love.

Shelly

Caregiving Tips During COVID

Photo image: Shutterstock

I was in San Francisco, thousands of miles from home, when Covid-19 first escalated. My thoughts immediately turned to those who relied on me for care. Then to the reality that I was in the “higher risk” category for people who might contract the virus.

What was I supposed to do? What kinds of plans should I set into motion “in case”? How could I best protect my loved ones and myself? I began to scramble to find answers.

The following information has been adapted from the Centers from Disease Control and Prevention. Most information applies generally to in-home family caregivers. Those caring for loved ones with dementia must remember that although dementia most likely does not increase the likelihood of infection, those with dementia are less able to protect themselves from the coronavirus; for instance, to wash their hands and comply with social distancing and other recommendations. For this reason, caregivers are responsible for extra diligence on behalf or loved ones with dementia.

General Tips

• Reinforce regular hand-washing and hygiene.
• Make arrangements for long-term drug refills.
• Isolate your loved one. Don’t allow them to go out of the house, and don’t allow visitors in. Keep track of any and all people who come into their presence in a notebook (date, name, time, duration of stay).
• Think ahead. Make alternative care plans for the person with dementia. Include adult care, therapies, respite, etc. that might be modified or cancelled in response to COVID-19.
• Make arrangements for an alternate caregiver in case the primary caregiver becomes sick.
• Ask if your loved one’s health care provider/s offer telehealth appointments.
• Stay updated daily about COVID-related information.
• Prepare a list of contact numbers: healthcare providers, family, friends, neighbors, drivers, teachers, employers, health department, and community resources.
• Watch for symptoms.

Photo: Unsplash, Glenn Carstens-Peters

Household Checklist

• Stay updated daily about COVID-related information.
• Ask neighbors and friends about their plans and availability to help if needed.
• Prepare a list of local and online support organizations that can provide resources and information.
• Take preventative steps:
  • Hand washing
  • Social distancing
  • Disinfecting surfaces
  • Avoiding touching eyes, nose, and mouth
  • Staying at home
  • Limiting contact with others

Preparation to be sick

• Acquire a thermometer, fever meds, gloves, masks, gowns or robes, fluids that contain electrolytes
• Consider the unique care needs or your loved one. Do they require oxygen? Assistance to eat? Therapies and treatments? How would you accommodate them during an illness or quarantine?
• Prepare an isolation room in case someone becomes sick.
• Consult the CDC HOUSE CHECKLIST for a detailed list for preparing your home.

The healing power of music

Music has the power to lift spirits, stir recall, and stimulate interaction. According to the Alzheimer’s Foundation of America, music can “shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function and coordinate motor movements.” Play your loved one’s favorites: hymns, show tunes, big band, country-western—whatever they love. Music can be a positive influence in healing.

What about you?

How can we encourage others as we pull together during this soul-stretching challenge? Personally, I lean into the power of prayer and my faith in a personal, loving God. I also prepare in practical ways, while making time for people.

What about you? How are you preparing? And what are you doing to remaining positive along the way? I’d love to hear from you.

Blessings and prayers,

Shelly

Caregiving and the Coronavirus

By Shelly Beach

Photo Credit:  Pixabay

I flew to California several weeks ago in the first days of the coronavirus alert. Over the following days, I watched media reports with growing concern. Dear family members live in the area where the first death to the coronavirus occurred, and the illness was quickly spreading in the area where I was traveling.

My thoughts quickly turned to people back home who relied on me for caregiving. It was important to protect my health in order to protect them. And I quickly realized how important it was for me to think about a contingency plan for their care in the event that I would become ill. With or without the coronavirus outbreak, a contingency plan for care is always important.

How can caregivers make wise decisions regarding the current health crisis?

Be prepared. I believe that not planning for a potential crisis for yourself or your loved one is unwise. It’s better to be prepared than to risk their health or yours assuming that the coronavirus will not or cannot reach your community. I’m a caregiver classified in the “high risk” category, so it’s especially important for people like me to think through potential risk factors.

Be thoughtful. Don’t panic. Look to the CDC and other reputable medical resources for information, rather than the media. Gather information from reliable resources.

Begin with simple, vital steps.

• As a caregiver, wash your heads regularly, lathering for at least 20 seconds. This is as long as it takes to sing Happy Birthday to yourself. Carry hand sanitizer with you and use it frequently.
• Do not touch your face, mouth, nose, or eyes.
• Do not touch surfaces that receive frequent touch: railings, door handles, tabletops, counters, pens, menus, etc. Wash hands immediately after being in a public environment or frequently if you are there for more than a short time.
• Do not shake hands or hug. Stay at least 6’ away from other people. Remove yourself from people who are coughing or show signs of a fever.
• Evaluate the need to be in large gatherings where the risk of contagion is higher.
• Make sure your loved one’s hands are washed frequently as well.
• Avoid sharing: dishes and glasses, food, towels, bedding, etc.
• Limit guests coming into your home.
• Keep your loved one away from pets because they can carry the virus.
• Evaluate the need for medical workers and aides who come into your home. People who work in the health industry and those who work in multiple homes are at greater risk for contracting the coronavirus.

Prepare a contingency care plan.

Consider the following factors:

• Who will care for my loved one if I become ill?
  • Do they require training or special information?
  • How will they access needed medications?
• Evaluate the benefits and risks of bringing health workers into your loved one’s home.
• Outside of getting medical care, have your loved one remain at home and self-isolate. Self-isolation is an option for those who have been exposed or who have mild symptoms.
  • Separate them from others who live in their home, as well as pets.
  • If possible, have them use a separate bathroom.
  • Have them wear a facemask whenever they’re around other people or animals. If your loved one cannot wear a face mask, those around them must wear one whenever they are in a room with your loved one.
• Create a health log.
  • Record their temperature daily.
  • Record the foods they eat.
  • Record visitors’ names and dates.
  • If your loved one’s temperature elevates to 101 degrees or above, experiences shortness of breath, or begins coughing, call their physician.

Above all, stay current on national and local alerts regarding public safety.

Be sure to communicate specific needs and expectations with your designated backup caregivers. Provide written instructions and important contact numbers.

I’d love to hear from you. What plans have you put into place in response to the coronavirus  crisis? What advice have you found most helpful?

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.

 

 

Caring for a Sick Spouse

 

 

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.

 

 

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. Ask 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

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.

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?

Tips for Long Distance Caregiving

Family caregiving from a distance is a challenge for millions of Americans, and the numbers are growing with our aging population. Living far from a sick loved can make providing care difficult. These difficulties extend to a caregiver’s family, personal life, work, and long-term career.

According to caregiving.org.,

• approximately 25% of long distance caregivers are the only or primary caregiver for their loved one.
• almost half report that spend one full day a week managing care.
• nearly 80% of these caregivers were working full or part-time.
• long-distance caregivers spend an average of $392 per month on travel and total out-of- pocket expenses.
• those who live between 1 and 3 hours away from the care recipient spent an average of $386 per month on travel and direct expenses for items needed by the care recipient; those who live more than 3 hours away spent an average of $674 per month.

Despite the challenges, only two options exist when your loved one lives far from you: 1) hire a professional to oversee their care, or 2) oversee their care yourself, with the help of a support system. Option #1 will involve a cost of $100 to $200 per hour that is not covered my Medicare. Aging life care professionals (aginglifecare.org) are often referred by physicians. They provide medical and psychological assessment, set up, and oversee care.

If finances make it necessary for you to oversee care yourself, consider the following suggestions:

Determine how much help your loved one needs. Family won’t always see eye-to-eye on this issue, and it may be helpful to get an assessment from a medical professional, such as your loved one’s doctor, or an agency that works with the elderly population in your community.

Assemble a team. Begin with people who come in contact with your loved one regularly: they’re a neighbor, see your loved one at church, go out to meals or run errands with them regularly, etc. Ask them to be attentive to any changes in behavior, appearance, activity level, mood, and tell them you’ll be calling on a regular basis to check on Mom, Dad, or Auntie. Be sure to explain your goal to take the best possible care of your loved one from a distance and your frustration with not being able to be there personally to assist.

Ask them if they might also be willing to assist occasionally with household tasks, errands, or driving. Then add to that list with names of others they recommend who may be able to help–children and grandchildren of your loved one’s friends, people from their church, community groups, etc.

Make a list of people who offer services that might be needed. Gather phone numbers for neighborhood kids who can mow lawns, shovel snow, clean gutters, for handymen, plumbers, electricians, etc.

Compile resources.  Most communities offer a range of free or subsidized services that can help seniors with basic needs such as home delivered meals, transportation, senior companion services and more. Contact the Area Agency on Aging near your loved one for more information. Find out what grocery stores in the area deliver. Call churches and inquire about senior ministries.

Hire help. Professional caregivers can be an enormous resource, providing as much social and emotional benefit to our loved one as they do housekeeping, food preparation, and personal care. Homecare aides charge between $12-$25. Be sure to do background checks and/or work through reputable agencies.

Use technology. Arrange for direct deposit of checks, automatic payment of utilities and routine bills, and online banking (consider having yourself placed on the account. Teach your loved one how to Skype or FaceTime, or have someone assist them.

Consider additional technologies such as motion sensors (like Silver Mother – sen. se/silvermother) and video cameras (nest.com/camera) that can help you make sure your loved one is moving around the house normally; computerized pillboxes (medminder. com) that will notify you if they forget to take their medication; simplified computer tablets (grandpad.net) that provide important face-to-face video calls; and a variety of websites that can help you coordinate care (lotsahelpinghands. com) and medical information (reunioncare.com) with other family members.

For more tips, call the National Institute on Aging at 800-222-2225 and order their free booklet “Long-Distance Caregiving: Twenty Questions and Answers.”

How to Help a Loved One with Dementia: Guest Post by Lori La Bey

Lori La Bey, founder of Alzheimer’s Speaks, explains why we shouldn’t try to capture the people we love in a freeze-frame, even at the end of their lives.

Lori La Bey has spent almost the whole of her adult life learning to live graciously with a condition that was not her own. For the majority of the three decades that her mother lived with dementia, Lori and her father acted as her primary care-partners, silently joining the more than 65 million Americans that provide daily assistance for their aged, chronically ill or disabled loved ones. In 2009, Lori founded Alzheimer’s Speaks, an organization whose efforts turn around the work of challenging the stigma of dementia and offering comfort and acceptance when crisis threatens.

It seems a unique cruelty that some are chosen to watch, and intimately attend to, the decline of their dearest relatives. Yet this is not how Lori tells her story. She joined the team at Folks to discuss finding humor and peace in care-partnering: the work that chose her. Folks magazine generously offered this article for reposting.

Tell me a bit about your earliest work as a caretaker.

I actually choose not to use the term caretaker. It’s evocative of a kind of lopsided relationship where only one person can touch the life of the other. My work was as a care-partner, because I was a daughter and a friend before all else. What I did was relational. There was give and take.

See, my mom had dementia for thirty years, more than half of my life. So I’ve spent a lot of time learning to live with this disease graciously. At first, our family really struggled knowing what was going on, as the doctors failed to diagnose her for ten years. They kept dismissing it as hormones, and yet when we finally reached out to a neurologist he said that she had the mental capacity of a three-year-old. My mom knew all along that something was wrong, and she would even joke that “these ain’t my girlfriend’s hormones.”

Wait, your mom knew?

Most people with dementia do. For my mom, there was a moment where she could no longer tell the time, but she wouldn’t tell people. When you talk to people with dementia, they always mention their work-a-rounds. For instance, my mom could tell the time by what was on TV. For the longest time, we couldn’t figure out why she would flip out if we changed the channel. Of course, those were the faces she was familiar with. New faces indicated a different hour of the day, and we just didn’t know it. She never told us about these kinds of things. They were her work-a-rounds, her attempts to be safe and to feel comfortable. As a family, it took us a long time to figure this out. We really didn’t even know to look for it.

After her diagnosis, did things improve?

Honestly, we just didn’t find much help. The only thing we knew about was the Alzheimer’s Association. Back then, there wasn’t a lot of support that was given to families and homes, and this is still true in some cases today. You could donate money and go on a walk, but that was about it. There weren’t product services or tools to help you actually live in the home independently. There was no sense that we were building a community. It was more of a bandage approach: just fix it and move on.

The focus of my work from day one has been to raise people’s voices so that they could find the services and community they needed to not feel so isolated. Care-partners need the freedom and empowerment to help remove fear from their work. Alzheimer’s doesn’t always look pretty. But you know what, our lives weren’t that pretty before Alzheimer’s hit. We all have our ups and downs, but when you enter a time of crisis you always think that things were perfect before. That’s what we do.

Why do we hold on to these false perceptions of our own lives?

Well, it’s easier for us to deal with. We don’t have to go into a new mode. We don’t like change. When someone gets diagnosed with dementia, we remember them at their pinnacle and we don’t want to give that up. We try to force them to be that person. They might have never been that person for years, but we go back in time.

I remember going through old pictures and finding an image of when I got married. I was in it with my mom and dad. When I saw it, I chuckled because I realized my dad’s dead, my mom’s got dementia, and I’m divorced. Meanwhile, I’m still trying to make my mom that person she was when I got married 30 years go. We all do this, but we must be more conscious of it. We have to stop “freeze-framing” people in time when the rest of the world continues to change.

 

It seems as though this would lead to tension in any relationship. What’s the effect of refusing to believe that your loved one is sick?

There’s a panic for people with Alzheimer’s or dementia that they make their loved ones anxious. This brings them to focus on care for others instead of themselves. They long for a sense of belonging, and they desire to restore things to what they once were. You put the pressure of getting things back to normal on a person that is really sick and it’s devastating.

So one of the things that most frustrates people with early onset Alzheimer’s or cognitive impairment is when people say to them, “Well, you look okay. You seem the same.” This infuriates them. It’s as though their friends and family really don’t want to believe that they have the symptoms to begin with because they look okay. They’re not broken they’re not bloody and they’re not wearing an oxygen tank. They look exactly the same, but they’re suffering.

Is there a kind of joy that comes with allowing your loved one, and yourself, to change?

My mom became the safest person I could ever go see. As the disease progressed, she lost her ego. She had no need to judge. No matter what was going on, I could just be with her and be who I was. I didn’t need to hide it anymore. I didn’t need to hold back my emotions and feelings. She allowed me to be who I was in any given moment. Whatever the emotion I could trust her and be my true self. I knew that she would still love me and still be there. It was something unexplainable. My mom was the safest place to be my authentic self. I didn’t have to meet expectations because she didn’t have any.

As the disease progressed, she lost her ego…
No matter what was going on,
I could just be with her and be who I was.

And others held on to an old vision of your mom?

One of my mom’s dear friends actually refused to visit her because it was too hard. So I met her for breakfast one morning and brought this DVD of my mom singing and dancing to some of her favorite music. I slid it across the table and this 76-year-old woman screamed out in the middle of a restaurant, “Oh my god, she looks horrible. Lori, I thought you were taking better care of her.” I burst out laughing.

I realized then that I didn’t see what she saw anymore. I didn’t see the Billy goat hair on her chin, I didn’t see the food splotch on her clothes, I didn’t see that her hair was messed up, I didn’t see any of that. I saw the glint in her eyes. I saw her dimples. I saw her huge smile, and I heard her giggle. But I looked at that picture and thanked that woman for pointing it out to me because I didn’t know I had changed on this journey. You do change. If you want to, you can find joy in these tiny moments that we overlook because we’re judging what it’s supposed to look like. If we can get past that, life becomes pretty darn precious.

Are there other specific memories following your mom’s diagnosis that you can share?

There was an afternoon when my mom was asleep at the nursing home. She had just been moved to the lowest functioning unit, and I didn’t want her there. The truth, though, was that she needed it for her own safety. When I entered the room, there were two beds separated by a faint curtain and my mom’s was closest to the window. Her roommate was gone and as I walked into the room I could see my mom on the bed through this curtain. She had her pants pulled down to her belly button, her shirt tucked under her boobs, and she was only 5’2 but weighed 300 pounds. Her whole belly was showing. So I walked in and I just kind of chuckled because she reminded me of Garfield basking by the window. I said, “Oh Mom, do I have to pull out that bikini for you?” Out of a dead sleep my mom woke up, looked me square in the eyes, and with a big smile on her face said, “Lori, I don’t think I should be wearing a bikini.” Then she went back to sleep.

What did you do?

I sat on that bed and bawled like a baby. My mom hadn’t said my name in three years, and I didn’t know if she still knew it. At that point, I didn’t ask anymore because I had a 50 percent chance she wouldn’t remember and this would wreck her day and mine. But that was just a pure moment of joy. She still knew who I was. We still had a relationship.

One of the things I tell people is that we’ll only find what we’re looking for, and I have found over the years that we only remember three things: what saddens us, what causes us fear, and what brings us joy. What saddens us is usually what we’ve lost. What causes us fear is projecting into the future and the unknown. Where there is joy is in the moment. If we’re living in the past or projecting into the future, we’re missing the moment of joy before us. It’s all about being present.

This seems to require an unbelievable selflessness. How do you move beyond self-pity?

Well, we all think we’re being person-centered when we have a long list of things we’re doing for someone else. When I ask other care-partners what they need to focus on, people usually rattle off a list and we simply assume that they’re being person-centered.

I’m sorry, could you clarify what that term means?

Person-centered is an over-used word. To most in the industry, it’s caring in a focused manner where the needs of our loved one comes first. The trouble is that our emotional instincts put our needs ahead of theirs.

Where there is joy is in the moment.

Isn’t that a pretty normal response?

Yes, but until we remove it we can’t really love them. In response, I began to ask these questions, “Are they safe, happy, and pain free?” For care-partners, the need to feel like we are doing something, making a difference, allows us to avoid our true feelings, which typically range from fear to sadness to shame to frustration to resentment. These are feelings that say, if we’re honest, this isn’t how I imagined my life. In order to shift to being person-centered, I believe we have to focus less on our lists and more on our relationship with the person.

What do people not realize about being a care-partner?

Interestingly, people don’t realize they are a care-partner. They think of themselves as a spouse, daughter, son, or a friend. We’ve set up a society where acting as a care-partner is a negative thing. Who do you know that says, “Hey, sign me up for that one!” Unless their trying to have a child, that’s one of the only times people consciously ask to be care-partners. We look down on it because it’s a state of crisis instead a state of comfort.

When you speak to people, what do you try to leave them with? How do you finish these conversations?

Well, one of the things I emphasize is teaching people self-care. Society has told us that this is our job, and it’s these silent expectations that cause people to lose their identity. This happened to me. For me, I had girlfriends that would invite me to coffee and I would say I didn’t have time. One day I said I’d go, and I’ll never forget what I said because it was so cocky and inappropriate. I said, “Okay, I’ll give you ten minutes.” It was like I was the queen or something. I went there to get them off my back. We laughed and cried for two hours. I didn’t know how empty I was until I allowed myself to be filled. When you’re on this path, you don’t even know that you’re drained.

Again, we have to shift from crisis to comfort in caregiving. The only way we’re going to really be able to do that is by having authentic conversations and let people know what our real needs are. This work just knocks on your door and you can’t expect it. The trouble is that we still don’t know what dementia is really like. We’re peering through the window and guessing, so we need to continue to have conversations and start with those living the story: professionals, care-partners, and those diagnosed.

written by Josh Andrew
Josh Andrew is an English teacher and freelance writer based out of Atlanta, Georgia. His work has appeared in The Atlantic (online), The Detroit News, and NPR’s affiliate station in Michigan.

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. When it comes to understanding health, no one is exactly the same. By sharing the experiences of these individuals, they hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of their mission at PillPack is to create healthcare experiences that empower people. They don’t believe people are defined by their conditions. They believe empathy and understanding are essential tools as we all work to help each other stay healthy. Folks is one effort to help redefine the way we think about health. Folks pays contributor and doesn’t sell advertising.

If you’d like to partner with Folks, or share a story, let us know at folks@pillpack.com.

How to Create Greater Comfort for Your Loved One with Dementia

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?