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.

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.

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.

Tips When You Suspect Your Loved One Has Dementia

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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?

Lean on Me: Letting Go of the Losses

old-couple-holding-handsMany things about my mother’s Alzheimer’s broke my heart. Few things more than the toll the disease took on my father’s spirit.

In the more than twelve years my mother suffered with the disease, my father refused to leave her side. He cared for her in their home until the battle nearly broke his own health. Then he unflinchingly agreed to sell his beloved home and move in with his children, where he and Mom could receive more support.

Later, as Mom continued to decline, he relinquished his “right” to move into an independent living home, but chose instead to live with my mother in a small residential facility for those with Alzheimer’s. She was seldom out of his sight.

There were many things about Mom’s Alzheimer’s Dad struggled to understand. Why a “good Christian woman” who had scolded her children for saying the word “darn” had developed the vocabulary of a sailor in her golden years. Why a woman who had prepared beautiful meals for her loved ones began eating with her fingers. Why had a woman who had always dressed impeccably had become inclined to disrobe in public. No amount of explanation could answer questions like these in my father’s black-and-white engineer’s mind. The enigmas of neurological disease were not a sufficient answer.

All my father ever wanted during those years my mother was ill was to be at her side and ease her suffering. His greatest joy was to hold her hand as he sat or walked beside her.

Then came the day when a hospice nurse called me aside and told me what I already knew. My mother’s gait had become increasingly unstable. She had to be walked slowly and steadily, always in the company of someone who understood how to match her halting and wavering pace. But my father, in his unswerving belief that he could encourage Mom to get better, sometimes tugged her when she balked. Hospice nurses told us we would have to tell him that for Mom’s safety, he could no longer hold her hand and walk her.

I could barely hold back the tears as the hospice nurse broke the news to my father in the most gracious way possible. He stood silent and never asked a single question before he turned away.

For my mother’s safety, we tried to honor the request. But as family members, we also were compelled to honor my father’s commitment to his wife and our mother. Over the next months, caregivers walked my other each day. But as often as possible, dad also walked Mom with her too, clinging to her hand as he always had, while a family member steadied her on the other.

Thank you, Dad, for teaching us to lean into the arms of those we love in our times of loss.