Alzheimer’s

Repetition and Alzheimer’s

Alzheimers-pixabay People with Alzheimer’s or dementia often say things over and over. They may repeat a word, question or activity. For instance, when a relative of mine advanced in his illness, he called family members with the same question six or seven times a day with the same question. It would have helped him and us better cope with his illness if we had better understood the underlying causes of his repetition.

But what causes this behavior? In most cases, the person’s memory and thinking ability has deteriorated because of the disease process. They are confused, disoriented, and looking for comfort, security, familiarity, and reassurance.

Causes

The main cause of behavioral symptoms in Alzheimer’s and other progressive dementias is the deterioration of brain cells. This causes a decline in the individual’s ability to make sense of their world. In these situations, most people don’t remember that they just asked a question or made a phone call.

People with dementia might ask repeated questions for other reasons. They may be expressing anxiety, asking for help or experiencing frustration or insecurity. For this reason, it’s important for caregivers to look beyond the question to the root cause. This task can be difficult, but our loved ones often provide clues with facial expressions and body language.

Because people with Alzheimer’s gradually lose the ability to communicate, it’s important to regularly monitor their comfort and anticipate their needs.

How to Respond

Look for a reason.
Repetition may be a symptom of an underlying concern. Does your loved one repeat themselves more often at a certain time of day or in certain environmental surroundings? Could any external factor be triggering fear or anxiety?
Focus on their emotion, not their behavior.
Take note of their tone of voice and facial expressions. Do you sense fear? Anxiety? Pain or discomfort?
Turn the action or behavior into an activity.
Ask for help—sweeping the floor, dusting, folding towels, helping with a simple recipe, making a sandwich, and raking leaves.
Stay calm, and be patient.
Reassure the person with a calm voice and gentle touch. Don’t argue or use logic, which will only frustrate your loved one.
Give an answer.
Provide an answer each and every time you are asked. If the person with dementia is able to read and understand, consider writing down the answer and place it in a location where it is easy for them to see. But do not express frustration with your tone or body language, no matter how many times they ask. For them, every time is the first time, and they are asking with the innocence of a child.
Engage the person in an activity.
Diversion can be helpful. Keep a list of simple chores, games, puzzles, and activities on hand, and try to redirect in a task that they enjoy doing.
Use memory aids.
If the person asks the same questions over and over again, create reminders by using notes, clocks, calendars or photographs.
Accept the behavior, and work with it.
Repetitive questions can be intensely annoying, but given the context of life, try to place the behavior in perspective. Repeating is part of the disease. It is not harmful. It is not personal. As much as you are able, be thankful for engagement with your loved one.

For more information and great resources on Alzheimer’s, visit the Alzheimer’s Association. You can also check out my books on caregiving:

Precious Lord, Take My Hand: Meditations for Caregivers

Ambushed by Grace: Help and Hope on the Caregiving Journey

It Is Well with My Soul: Meditations for Those Living with Illness, Pain, and the Challenges of Aging

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:

Think of the easiest way to explain directions or a process. Break it down into individual steps.
If someone is being uncooperative, try to think from their perspective about what the problem might be.
When possible, modify activities to be easier.
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.”
Be sensitive to your tone and facial expression. It’s more important HOW you say something than what you are saying.
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.
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.
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?”).
People with dementia often respond to the question “Can you help me?”.
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.
Give instructions only one step or two at a time.
Set out any items that are needed for a task.
If you are asking your elder to do something, do it with them to demonstrate.
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.

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.
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.
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.
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.
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.
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.
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

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.
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.
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.
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.
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.
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 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.
Learn what soothes. This might be music (hymns, vintage music, boogie, etc.), looking at pictures (children’s faces are often favorites), rocking or snuggling a life-like doll, old TV shows like I Love Lucy, gardening, etc.

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

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

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

How to 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.

Caregiving: How to Talk to Someone with Dementia

Mom and Dad

My mom and dad lived with my husband and me for about five years. Mom had been diagnosed with Alzheimer’s, and my 75 year-old father couldn’t care for Mom’s needs on his own.

One of the hardest things for Dad to understand was that he couldn’t talk to Mom the same way anymore.

Her mental capacities were slowly regressing. And the situation was complicated by my father’s Asbergerger’s. He simply didn’t understand why talking to Mom a certain way was no longer appropriate.

Actually, many people have a hard time understanding this about dementia. So here are a few suggestions.

1. Facial expression and tone are often more important than what you say.

People with dementia are highly intuitive. They can be easily agitated if they sense frustration in others. Speak in a mediated, even tone. Smile. Think about the way a kindergarten teacher would speak to a frightened child and you’ll get the point.

I often told people that I could quote the phone book to my mother to calm her as long as I spoke kindly and calmly. For a number of years, she lived in a state of mental agitation and fear, and it was difficult to maintain a calm demeanor, but it was crucial to offer her comfort, no matter how I felt.

2. Learn how to enter into your loved one’s reality.

Because of my father’s Asberger’s, his responses to Mom were often literal and reality-based. But caregivers must learn to look below the surface. For instance, yes, my mother might be asking to go home to her mother, but telling Mom that her mother was dead wasn’t a good answer.

My mother needed diversion and comfort for her troubled mind. Mom lived in a state of delusion, where the real world no longer existed. Sometimes I had to respond to her there first, then draw her into a new activity.

For instance, “I’m so sorry that you can’t find your mother. Can you tell me about her?” Then I would ask her to join me folding towels or peeling boiled eggs or in some other simple task.

3. Don’t ask you loved one for information. Provide it for them.

For instance, when entering a room, I’d often say, “Hi, Mom, it’s Shelly, your daughter.”

Or when people came to visit, I’d always say, “Mom, this is Nathan your grandson and his wife Allison. They brought their two baby boys Gabe and Liam.” This way Mom was relieved of the pressure of having to remember people and events.

TELL them things and allow them to chime in as they feel comfortable. Don’t correct them if their responses aren’t “right.” Right and wrong no longer are important, in the same way that they wouldn’t be if a five year-old was interacting with adults.

4. Speak clearly and slowly in short sentences, and give your loved one time to respond.

Make eye contact and offer simple choices. Use body language to reassure them.

The most important thing is to help those with dementia feel loved and included, just for being themselves.

More tips are included in the appendices of Ambushed by Grace: Help and Hope on the Caregiving Journey.

Tips When You Suspect Your Loved One Has Dementia

Like most people, my family was unprepared for my mother’s Alzheimer’s diagnosis. We saw the signs, but we didn’t want to admit that such an awful thing could happen to our mom.

And so we didn’t talk about the hard things for too long. By the time we were ready to make a plan, we’d already hit crisis stage.

Many of my friends are now in a similar position, and you may be, too. Here are my top recommendations for how to best care for your loved one if you suspect they may have or be heading toward dementia.

1. Get them under the care of a gerontologist.

A gerontologist is a doctor trained in illnesses in the elderly. My mother had heart problems, a seizure disorder, diabetes, was a stroke risk, and was sensitive to a number of Alzheimer’s-related medications. We needed ONE doctor who understood dementia and could best advise us regarding her medications and long-term care. Gerontologists understand with the various forms of dementia and what medications can best help your loved one, as well as drug interactions and how best care for those with dementia-related needs.

2. Have your loved one assessed by the Area Agency on Aging in the area where they live to find available services.

For a number of years, my mom and dad lived with my husband and me. We found an amazing adult day care program for my mother that offered me respite three mornings a week. A bus came to our home and picked up my mom (and dad) at our doorstep free of charge. The day care program offered programming specific to my mother’s needs, and they also bathed her. This was hugely helpful to me, since Mom was terrified of water, and bath time was a battleground. I’m convinced that this program (one of several that we accessed) extended my mother’s cognitive abilities, as well as the time we were able to care for her (and my dad) in our home.

3. Consult an elder care lawyer.

Our family has never regretted this decision, even though it meant an initial financial “investment,” which was returned over and over again. This decision saved my mother and father tens of thousands of dollars. It preserved funds that are still available for my 93-year-old father’s care. Elder care lawyers can help you and your family make the best possible decisions regarding your loved one’s, your parent, or your parents’ estate. If you live in Michigan or West Michigan, I recommend Tim Alles, who practices in the Grand Rapids area.

4. Begin talking and planning ASAP.

I recommend Jolene Philo’s Caregiver’s Notebook (published by Discovery House Publishers) to help you begin the discussion and make appropriate preparations. It’s a great tools. Of course, my books are also helpful, especially Ambushed by Grace: Help and Hope on the Caregiving Journey. This book is packed with valuable websites and resources for caregivers who may feel caught off-guard.

5. Don’t be afraid to ask for help.

Bring your loved one’s physician, pastor, or trusted friends into the discussion. Work to put together a long-term plan with flexible options. What works today may not work tomorrow. And above all, turn to God as your ultimate resource. We can never be enough to meet the needs of our loved one. God is with us. He will supply the wisdom and strength that we need every step of the way.

What about YOU? If you’ve been a caregiver for someone with dementia, what would you recommend to others?

Dotty’s Ten Tips for Communicating with a Person Living with Dementia

One of the most difficult things for my father to understand as my mother’s Alzheimer’s progressed was how to appropriately communicate with her. It was hard for Dad to recognize that Mom’s abilities to process information and to respond to her environment were changing.

The most important thing for all of us who have loved ones with dementia to remember is to think about life from my their changing perspective.

1. Speak slowly and move deliberately.

2. Moderate your tone.

3. Use fewer words.

4. Don’t ask questions–provide information.

5. Treat your loved one like an elder, not the elderly.

For more information on dementia, subscribe to the Alzheimer’s Reading Room.

For Dotty’s tips on communicating with a person living with dementia, click here.

The Story Behind My Book “Precious Lord, Take My Hand”

My mom had shown signs of dementia for more than five years before anyone in our family had the courage to say the word Alzheimer’s out loud.

To me, the word was a death sentence. My mom’s mom had suffered from dementia as well before dying of a stroke.

I simply didn’t want to think about what the end would look like for my mother.

So when a friend approached me and suggested I write a book about what it was like to be a caregiver for both my mom and my father-in-law who suffered from Parkinson’s disease, I gave serious thought to whacking her upside the head. The last thing in the world I wanted to do was write a book about how crazy my life had become.

Who’ld want to read about God-In-The-Mayhem? For instance, I was a caregiver with a recently diagnosed brain lesion. I was supposed to be resting and recuperating…

While caring for my father-in-law with mental illness and Parkinson’s and a heart condition.

And supporting our daughter who’d just returned from tsunami relief work with post-traumatic stress disorder.

And trying not to mouth-breathe over our recently-come-home prodigal son.

And did I mention that my husband and I had just moved across the country and started new jobs?

So I threw my head back and laughed in my friend’s face at the suggestion that I write a book for caregivers. No Christian publisher would print a book about mom trying to get naked in the Easter service or learning how to swear at the age of 81. But I went home and wrote out a list of what my real-life devotionals would be about–the things caregivers really struggle with.

And if I could have created a cover, it would have had a button to push that gave out a scream: “Aaaggghhh!! But God is Good.”

I thought it was a great title.

More than 100,000 copies and half a dozen years later, I’m glad my friend had the courage to ask me to be transparent about my caregiving experiences. I’m glad God gives the grace to use chaos for his glory. I’m grateful every day of my life that people find hope in the pages of Precious Lord, Take My Hand.

Life if tough. Alzheimer’s, Parkinson’s, brain lesions, and other life-robbing diseases stink. In this life, we live in the tension where the qualities sin and grace co-exist. But God is good. All the time. And he did not come only to conquer sin and provide a solution. He came to take our hand and sit beside us in our suffering.

Sandscribblings

The Blog of Author and Speaker Shelly Beach