Caring for a Sick Spouse

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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.

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  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

Documents Every Caregiver Needs

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Photo Credit: Unsplash, Helloquence

Most people become caregivers by virtue of a loved one’s health crisis or unexpected diagnosis—a phone call from caring friends that Dad’s behavior has changed, a tragic fall or accident, or a diagnosis of a life-impairing disease. Suddenly the world tilts, and you’re a caregiver. What will you need in order to carry out your loved one’s wishes and provide for their needs for the long-term? Your goals are to 1) keep them as comfortable as possible, and 2) to protect their assets for their enjoyment and care for as long as possible. Here are a few of the basic documents you will need to accomplish those goals.

 

POWER OF ATTORNEY

A power of attorney is a document by which people designate an agent to act on their behalf in financial or legal matters. This document makes it legally possible for you to conduct legal, financial, and business matters for your loved one. A durable power of attorney extends your designated authority in the event that your loved one becomes mentally incapable of conducting his or her own affairs.

 

MEDICAL POWER OF ATTORNEY

A medical power of attorney allows you to make health care decisions on behalf of your loved one. Everyone over the age of 17 should complete a medical power of attorney in order to state their desires, should a catastrophic event strike.

 

HIPPA AUTHORIZATION

The Health Information Portability and Accountability Act (HIPAA) keeps your health information and records private. Unless your loved one signs HIPPA authorization giving you access to speak to all of their treating medical provider (each medical provider has their own form), providers are legally prohibited to speak to you about your loved one’s medical condition, even if you are a relative. In some states, HIPPA authorization is not recognized unless the patient is unable to express their own wishes. Give copies of the HIPAA authorization form to health-care providers, and make sure you have additional copies on hand in case you must provide them.

 

SOCIAL SECURITY REPRESENTATIVE PAYEE

This is perhaps one of the best-kept and most vital secrets to be learned by caregivers of those who receive Social Security benefits and are unable to manage their finances. The Social Security Administration does not recognize Power of Attorney. Its own form and process for caregivers called Social Security Representative Payee. In order to speak to, negotiate with, or communicate about your loved one’s SS benefits (which often happens when they become incapacitated), you need to apply to become their SS Representative Payee. My family discovered this information in a crisis, which was unfortunate for us and caused a delay of SS payments for several months. For more information, go to https://www.ssa.gov/pubs/EN-05-10076.pdf

Have you found yourself unprepared as a caregiver when these documents were needed? We’d love to hear from you.

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?

Immanuel: The God of Hopes and Fears

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For many of us, 2016 was a challenging year. 

Maybe “challenging” is the PC word you’d use if someone at church asked you about the year you had. In the privacy of your self-talk you might choose another word.

Heartbreaking.

Shattering.

Crappy, or other similar adjectives.

You may have lost a loved one. Been blindsided by abandonment. Been kicked to the curb in the face of injustice or self-interest, in spite of your faithful service. Or faced a dreaded diagnosis-yours or a loved one’s.

We look forward to a new year with hope that life will be better. Why?

Our hopes and fears are almost always intertwined. 

My first brain episode almost took my life. Doctors feared they might not be able to turn around the course of my rapid decline. My survival was in question, and it took over sixteen years for doctors to determine a diagnosis. During the first five years following that episode, I feared every symptom that struck my body would return me to a hospital bed and a dreaded diagnosis. I hoped and prayed I would remain healthy and thanked God for the measure of health and strength that returned to me. Many of my hopes and fears were tied to my health for years.

This year as I caught the phrase, “hope and fears of all the years of all the years are met in Thee tonight,” I’ve listened to the words of “O Little Town of Bethlehem” with new insight.

The hopes and fears of all humanity throughout history were met in Jesus’ birth. He lived among us, defeated death, and rose again. 

From the moment of His conception, He shared in our human experiences–our pain and suffering, sickness, heartbreak, disappointment, abandonment, hopes, and fears. He took the punishment we deserved to the grave so we could live with hope, free from fear of sin’s punishment and death. We all sin and fall short of God’s glory; we all demand our own way like the selfish rebels we are–yet He loves us so deeply we could never comprehend it.

Because of Jesus, I can look into my future without fear–no matter my diagnosis, income, feelings, or any human circumstances, because He is the source of all hope that has ever or ever will exist and the answer to every fear that has echoed through history.

IMMANUEL–God with us!

 

Tips for Long Distance Caregiving

A geriatrician holds the hand of an elderly woman with arthritis.

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 Find the “Real” You

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I’m a child of the sixties and seventies, a time when generations of young people were busy trying to “find themselves.” I was never quite sure what that meant, although it was pretty un-hip to say it outloud at the time. If I pinched myself, I was there. If I spoke, I could hear my voice. I could see my reflection in a mirror. So the “real” me had to be there, right?

Wrong.

My voice, my reflection, the sensations I feel–not even my emotions–don’t make up the essence of who I am.

So who is the “real” me?

I’m not an accident or simply the biological product of the combined genes of my parents and forbears. I am not the offspring of “Mother Nature.”

I am so uniquely, complexly crafted and designed that no one else who has ever walked the earth is exactly like me. God created me with a body, soul, and spirit. He also created me with a purpose and plan, and I will live every day of my life seeking purpose, love, significance, relationship, beauty that originates in Him and can only ultimately be found in Him as our Author and Creator.

When we look at the world, it’s easy to see we messed up the perfect creation God placed in our hands to care for. And we also mess up relationships because of our self-will, selfishness and sin. At the center of our hearts, we all are rebels shaking our fists at God, telling Him He isn’t fair and we should get to make the rules.

When we back away from the Word of God because we think what it says is too hard, or we’re trapped by our wounds, we lose sight of who we really are.

When we walk in freedom as sons and daughters of God we are…

Forgiven and free to forgive. 

Unconditionally loved and free to love unconditionally.

Gifted with mercy and enabled to gift others with mercy.

Inexpressibly beautiful and given eyes to see the beauty in others.

Confident in God’s purpose and plan for us, no matter our circumstances.

The “real” me is rooted in my relationship with God.

In the words of the gospel song, “All that I am and ever hope to be, I owe it all to Thee…to God be the glory” But how do I learn to get to know God better?

The same way you learn about anyone. By spending time with Him. By listening to Him. By paying attention.

  1. Read the Word. The Bible isn’t a manual or rule book or even material for sermons. It’s God’s written letter to us about who He is and how He loves us–what His plan is to save us from ourselves.
  2. Meditate, or actively focus, on Scripture. Focus on one small portion at a time and listen to see what moves your spirit.  Don’t go looking for verses to prove your point or cheer you up. Listen. Pay attention to the Spirit of God speaking to you.
  3. Ask questions.  What is God trying to tell me about Himself? Why is it important for me to know this? How does this affect His relationship with me? How does this relate to my life? Is there something I’m being prompted to change or do?
  4. Listen. As you move through your day, listen for God’s voice. Is He speaking to you through music, through the words of a friend, through a thought, a Christian message on the radio, a sudden memory?
  5. Keep the conversation going. Shoot up sentence prayers throughout the day. Chat with God out loud. Praise God by singing and dancing. Visualize Jesus standing beside you throughout the day–because He is–and talk to Him.

Be blessed as the real you blossoms growing in the presence of Jesus and resting in His love for you. 

To hear more on the topic of authenticity, listen to FreedomGirlsRadio, Finding Your Voice.

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

lori-wi-webinar-promo-025Lori 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.

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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.

la-beys-laughingAre 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.

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