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?

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.

lori-la-bey-and-mother-2011-0021

 

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.

How to Create Greater Comfort for Your Loved One with Dementia

 Mom and Dad

My Mom and Dad

 

  • Do you really dislike the feeling of water on your face?
  • Do you hate sudden loud noises?
  • Do you, like me, dislike the smell of strong perfume?
  • Does having your feet touched creep you out?

Our senses create our stories.

Life is a sensory experience. We file memories as sights, smells, sounds, sensations, and tastes. Our senses give us the information we need so we know how to react to our environment (how high to step, how far to reach, how to balance, etc.).

As we age, we all develop preferences for certain kinds of sensory information and dislikes for others. We base our habits and preferences based, in part, on this. For instance, you may prefer bright vibrant colors, and your sister may prefer pastels. (Now you know why she painted her house lavender.) But as we age, our sensory efficiency declines, and we become less able to know how to react to our environment. Unfortunately, many caregivers don’t understand the importance of sensory loss in dementia.

Dementia in its many forms shrinks sensory functioning beyond the normal decline of aging.

For instance, you’ll see my mother in the picture above. She was born with severe vision problems and had many corrective eye surgeries over the course of her life. As an adult, her vision was always poor. As she aged, it became worse. With the challenges of Alzheimer’s, life became very confusing for Mom. Although she couldn’t put it into words, we discerned that she had difficulty making sense of her surroundings. Alzheimer’s experts tell us that Alzheimer’s patients often have difficulty interpreting their surroundings and even have hallucinations.

So how can you create a more comfortable life for your loved one with dementia?

Become an expert in reading your loved one’s

verbal and their body language.

What are their likes and dislikes? For instance, I knew my mother feared going from wide spaces into narrow spaces, for instance from the living room down the hallway. Something about wide to narrow or perhaps light to darker appeared frightening to her. She would throw her body backwards and fight moving forward.

  1. Know your loved ones preferences.

Do they prefer a bright environment or dark environment?

Do they find mirrors confusing?

Do certain colors soothe them? Stimulate them?

Do they seek or avoid music, the radio, conversation, and other auditory stimulation, etc.?

Do they enjoy or tolerate touch from those they are close to?

What kind of food do they like and dislike: spicy, sour, salty, sweet, cold, hot, crunchy, chewy, textures? (TIP: Expect these to change over the course of the illness.)

Do they enjoy scents and aromas or avoid them?

Do enjoy feeling textures?

Are they stimulated by books? Music? Children? Dolls or stuffed animals? Gardening? Coloring? Cooking? Singing?

Are they soothed by books? Music? Children? Dolls or stuffed animals? Gardening? Coloring? Cooking? Singing?

What kind of interpersonal contact is most effective with your loved one? (TIP: Tone of voice and eye contact are the two most important elements of communicating with a loved one with dementia. Speak slowly in an even, loving tone, choosing simple words. DON’T ARGUE OR TRY TO REASON. Communicate empathy and try to divert to another activity.

 

2. Create visual contrasts to help increase perception.

If everything in your bathroom is one color, put a contrasting color lid on the toilet seat.

Paint the doors of their bedroom and the bathroom a contrasting color from other doors in the house to help them find their room. (TIP: Those with dementia may increasingly find blues, greens and purples harder to differentiate.)

Paint handrails a contrasting color to walls.

Use plates that contrast with the color of the food.

Avoid dark rugs, which can look like holes in the ground (and also create trip hazards).

Avoid patterned floor coverings and know that striped pavement, square tiles, and changing floor patterns can cause confusion and disorientation, as well as revolving doors, escalators, or fast wheelchair rides.

Above all, love them by investing the time

to truly know them. 

In seemingly insignificant moments we learn to read the intake of breath that unmasks hidden pain. The narrowed  eyes that reveal fear. The knit brow that communicates confusion. As time progresses, your loved one will need you even more to help them see, feel, hear, taste, and touch their world.

Your caregiving will be one of the most loving,

Christlike tasks you will ever accomplish. 

What accommodations have you made for your loved one?

 

Caregiving: How to Talk to Someone with Dementia

          Mom and Dad

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

carsharblogpic

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

 

elderlymanmentallyill

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 Cost of Escalating Dementia

husband-wife dementia

The day I left my job as a college educator, I set aside a lot of things. A career in a respected profession. Medical insurance. Accumulating Social Security benefits. Extra “pin money,” as my mother would have called it, to kick up my heels at the mall once in a while. I was leaving my job as a college writing college instructor, in part, to take care of my parents and my father-in-law.

For several years in our marriage my husband Dan and I lived in Iowa where we cared for his father with Parkinson’s disease and mental illness in our home while I commuted back and forth to Michigan, helping to oversee the care of my mother with Alzheimer’s and my father with multiple health issues.

I was working part-time as an educator as well as writing books. It was a grueling few years. Like many women, I eventually gave up a professional position to pursue self-employment so I could care for parents full-time.

A new study in the New England Journal of Medicine reports that 15% of Americans 70 and older have dementia. and the cost of caring for them is estimated at $70,000 per year.

The Alzheimer’s Association estimates that there are 15 million caregivers in the nation, and 2.3 are providing long-distance care for their loved ones. It is estimated that long-distance caregivers spend an average of $10,000 per year out-of-pocket to provide care for their loved ones, twice the amount of those who live near loved ones.

It’s not unusual for a caregiving spouse to leave their job or reduce their work load to part-time to accommodate the responsibilities of caregiving. But the cost for men and women varies greatly. According to a 2011 study conducted by MetLife

  • For women, the total individual amount of lost wages due to leaving the labor force early because of caregiving responsibilities equals $142,693. The estimated impact of caregiving on lost Social Security benefits is $131,351.
    A very conservative estimated impact on pensions is approximately $50,000. Thus, in total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044.
  • For men, the total individual amount of lost wages due to leaving the
    labor force early because of caregiving responsibilities equals $89,107. The estimated impact of caregiving on lost Social Security benefits is $144,609. Adding in a conservative estimate of the impact on pensions at $50,000, the total impact equals $283,716 for men, or $303,880 for the average male or female caregiver 50+ who cares for a parent.

So what can families do?

  • Start talking early with family members about plans for long-term care for you or your loved ones. Discuss how responsibilities will be shared.
  • Consider options that promote independent living, such as geriatric care managers, adult day services such as Sarah Care, county respite and day care services available through your local Area Agency on Aging, medical alert systems, and other options.
  • Assess the available resources in the area where you or your loved one would be living. For instance,  the county where we resided in Iowa was one of the best in the nation for providing eldercare services.
  • Consider a transitional plan of downsizing and moving over a period of time, if necessary.

What options has your family found beneficial? We’d love to hear from you.