Friday, July 24, 2015

How to Help a Caregiver, Part 2

Last week, I posted the first half of Lisa Cooke’s blog, “Ways to Help a Caregiver.” For those who are coming here first, Lisa polled her LBD support group for ideas about how to help and shared their responses in her blog, Lewy Warriors. In that first half, she suggested some nice things to say, and some things to do that didn’t include taking responsibility for the loved one, such as helping with chores, bringing a meal, and visiting. This is the final half of that wonderful blog.

Include the caregiver and their LO in social activities. As stated before, caregiving is very lonely. Day after day goes by with routines that never let up. We can’t just decide one day that we’re not going feed or dress our LO. We can’t take a break from taking them to the bathroom. Providing some social interaction can give a much needed change.

When my father reached the point with Parkinson’s that he could no longer be left alone, three of his sisters came to my parent’s house every Wednesday evening so my mother could go to choir practice. Mom would usually bake a cake or pie before they came, and the sisters had a couple of hours to visit with my father and each other. They loved the time reminiscing, and my mom’s desserts were an added bonus (she’s a good cook) and it gave my mother a couple of hours each week where she didn’t have to worry about him. It was a win-win for everyone.

Now that my husband is no longer capable of going out to dinner, his brother, sister, and their spouses come to our home occasionally for pot-luck or pizza. My husband gets to stay in his favorite recliner and still visit with his family. It’s an easy way to enjoy each other without moving him from his comfort zone.

If the LO is still able to leave the house, plan a small gathering with friends. Talk to the caregiver to find out if there are special needs (Example: foods that are eaten easily, a comfortable place to sit, and easy access.) Keep in mind that those with dementia tend to get anxious easily. No loud music, large crowds or frolicking children unless you know those things will not stress the patient.

For the brave ones. The number one request by far dealt with giving the caregiver a break, even for a few hours. One of the moderators of our support group said, “I wish someone would call and say, ‘I’ll be over on Sunday from 1-3 to sit with your wife, if you have anything you’d like to do.’” He said he needed the friend to be specific with when and how long, and to give him an opportunity to plan. He also mentioned how much he would appreciate if someone would call and offer to help with the next doctor’s appointment. Transporting our LOs is tough to do alone.

“If someone could just come one night and take care of night issues so I can get some sleep, that would be great.” Even one night in a month can make a huge difference to an exhausted caregiver. And knowing the primary caregiver is asleep in the other room should relieve some of the fear of being in the situation of dealing with nighttime issues.

One caregiver had a friend that would come to her house one Sunday a month to fix breakfast and visit with her husband so she could go to church. Another caregiver said her husband had a friend that takes her husband to get a haircut and out to lunch once a month. For those caregivers, those days are a treasure they can count on.

For those who live out of town. What if the caregiving situation is for your loved one and you live out of town? Maybe, you have a sibling or close family member taking care of your parent and you don’t know how to help. There are things you can do long-distance that can make a big difference.


One caregiver said her brothers and sisters got together and hired an aide so she could get a much needed vacation after 7 years of having no break in caregiving duties for their parents. “It was less than $100 for each of them and I needed that vacation desperately.”

Sending text messages to both the LO and the caregiver can brighten each of their days. Phone calls to ask how they’re doing and offer moral support are always helpful. Even flowers sent to let the caregiver know you appreciate his duties lets him know he’s not forgotten.

In summary
•Helping out doesn’t have to mean providing physical care for the patient. Offering to do chores or bring dinner is always welcomed.
•Phone calls, hiring an aide for a couple of days, or even sending flowers or cards are thoughtful ways to help.
•Please visit, but call first and ask for a specific time that would work well.
•Offer to sit for an hour or two so the caregiver can get out.
•If you have several friends or family members that are close to the caregiver, work as a team to take turns bringing meals, doing chores, or sitting with their LO. Things like that are often easier in a group and letting the caregiver know there’s a team supporting her is priceless.
I hope you enjoy Lisa’s blogs as much as Jim and I do. Expect to see her here about once a month because she’s agreed to trade blogs.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Saturday, July 18, 2015

How to Help a Caregiver, Part 1

Lisa Cooke is our guest blogger this week and next. She received such positive feedback for her “What NOT to say to a caregiver” blog (reposted here last month) that she decided to do a follow-up. What she came up with is so long—but so good—that I’ve divided it into two blog entries.

Many friends and family members really want to help, but they don’t know how. I polled some on-line support groups, asking the caregivers what they wish people would say or offer in order to make their lives a little easier. Below is a list of suggestions that might be helpful for both the family members and the caregivers. I’m frequently asked by friends if there’s anything they can do and I never have an answer. Now, I have some ideas!

Nice things to say Sometimes, a kind word goes a long way, but knowing what to say without hitting a nerve can be tricky. Everyone has their pet peeve when it comes to things like this, but most caregivers were pleased when they were complimented for what they did.

She’s lucky to have you taking care of her and You’re doing a great job are comments that offer encouragement when given by someone close enough to the situation to know what you’re going through. However, when I hear those things from someone I barely know, I always think, “How would you know?” As with anything, sincerity is important.

My sister-in-law is very close and offers support and love regularly. When she sends an email, she nearly always ends it by thanking me for loving her brother so much. It warms my heart, every time. If your LO is being cared for by a family member, tell them you appreciate and are grateful for the love they’re giving in your absence.

I think about you often. Sometimes it helps to know others are aware of your struggles and pause to offer prayer or positive thoughts. Caregiving is a lonely business. It’s easy for us to think the rest of the world has forgotten we’re alive.

Helpful things to do. When I asked the question, “What do you wish people would say to you?” the overwhelming response was an offer of help. At this point, many friends reading this are cringing. The idea of helping care for someone with dementia scares them to death. But there are ways you can help that don’t require providing physical care. You can offer to do chores or deliver a meal.

“There are little things around the house that I can’t do. I wish someone would offer to fix the back door, or remove some of the brush from our yard,” one caregiver said. If you’re handy with home repairs, consider asking the caregiver to put together a list of projects s/he needs help with, then set up a time to do it. That last part is key. If you don’t arrange a time to show up, the caregiver probably won’t follow through with the offer. Ironically, they’re too overwhelmed with everything else to schedule help.

“Bringing over a meal every once in a while would be nice, or bringing something to stick in the freezer for those days when I’m too tired to cook.” Caregiving usually gets to the point of being very confining. Having a change in the menu can feel like a miniature vacation, even better if the person bringing the meal, stays to share it! If you don’t cook, pick up a meal or gift card for takeout from a restaurant. It’ll be appreciated, guaranteed.

Another caregiver said, “I wish someone would offer to clean my home or do my laundry. It would be nice to get a break.” Caregiving is all consuming. Unfortunately, the house still gets dirty and laundry still piles up. If your schedule doesn’t allow you to help in that way, consider paying for a housekeeper before the holidays or when family is coming for a visit. The caregiver will be eternally grateful.

VISIT! Another oft repeated request was for a visit. Many caregivers feel forgotten. It’s an easy thing to happen. The withdrawal from society happens gradually as their LO’s disease progresses. Soon, their friends forget about them as they continue on with their own lives. There’s also the problem of friends being afraid to visit. Dementia has a horrible reputation, sometimes it’s warranted, but short visits normally aren’t a problem.

The key is to call first and give the caregiver a couple of days to plan for the visit. This allows the caregiver a chance to schedule personal tasks that need to be done privately like showering. Simply pick up the phone and say, “We’d love to come and see you guys. What would be a good time for you?” Follow that with, “Can we bring something or run an errand for you on our way?”

I’m an author and caregiving duties have forced me to stop traveling to writer’s conferences and workshops. I miss that part of my life quite a bit. Luckily, I have some dear friends who also write and who call me periodically to brainstorm plots. As a rule, they live too far away to stop in for a visit, but one of them actually took a day of her spring break to travel the 3 hours it takes to visit me. She spent the night and we talked writing and book plots for the better part of two days. It was wonderful and didn’t require I leave my husband behind. That’s a gift I will never forget.

Read the rest of Lisa's suggestions next week! In the meantime, you can go to her blog, LewyWarriors and read more of her writing.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia


Friday, July 10, 2015

Adjusting to Parkinson's--and Early Dementia

This week, we are fortunate to have Carol Marak as guest blogger. She is a contributor for the senior living and healthcare market, advocating for older adults and family caregivers. Carol  writes on tough topics like chronic issues, senior care and housing. Read her work at AssistedLivingFacilities.org and SeniorCare.com. Find her on LinkedIn and contact her at Carol@SeniorCare.com.

Until recently, my family had little exposure to Parkinson’s disease. We lived with Alzheimer’s because, at the age of 85, Dad received the dreaded diagnosis. Even though he passed eight years ago, I think about the last years of his life with a soft heart. It’s a friend of mine that received a Parkinson’s diagnosis over fifteen years ago. I’ve known her for twelve years and during most of them, I could hardly recognize her illness. The only glaring symptom was the inoperability of the left arm. Other than that, Ellen managed very well.

Over the past year, her family is worried because they see signs of mental decline, and since Ellen lives alone, it adds pressure to their worry. Mine too since I live next door and see her every day, and she’s like family to me. Ellen taught me to sew and to paint pictures of flowers using her unique watercolor techniques. Always fun and ready for a new adventure, but Ellen is changing now.

I don’t know a lot about Parkinson’s. However, I do know how dementia affected my Dad’s life. Even though Ellen is extremely independent, that’s no longer the case, and she faces dependency. That’s the hardest thing for her and her family to accept.

At the time of her diagnosis, Ellen experienced many sleepless nights. Often, she’d tell me how she stayed up all night or would get up and read until the early dawn. I never understood why it was a common topic of our talks. At the time, I didn’t know this was a symptom of Parkinson’s, and I guess she was gauging her decline through the sleepless nights. Six years later, she’s complaining about:

• Losing focus
• Unable to annunciate
• Hallucinations at bedtime
• Even depression and irritability

Believe me, this is not the Ellen I know. There are times in conversation that she forgets names, even her grandchildren’s which is tragic because they are her life.

Unfortunately, shortly, I’ll lose my dear neighbor. Her house is on the market and a move to a nearby residential care home is near. Like my dad, Ellen concedes to the housing change since her fall. She broke her clavicle. I remember how my Dad resisted moving from his home. He didn’t agree to it until after his fourth emergency trip to the hospital when he fell and broke his hip. That was the deciding factor.

Like most family caregivers, the first step in searching for assisted living is understanding the types of care a loved one requires. In Ellens case, she needs a lot of help with all everyday tasks like ADLs and IDLs (activities of daily living and instrumental tasks of daily living.) For example, at the beginning my Dad had trouble with dressing and incontinence. But over time, he needed help with bathing, feeding, walking, and finally, with transferring.

As for Ellen, she needs help with all of them since her shoulder is strapped in a harness. But after recovery, she’ll continue to need help with mobility, bathing, meal preparation, and some transferring, I believe. Her occupational therapist suggests moving to a home that can assist with all ADLs and says to look for the following assisted living room design when touring. The best room space for Ellen:

• Find a room with plenty of space to move around in and to position furniture with wide spaces in between.
• Avoid using extension cords.
• Use chairs with straight backs, firm seats, and armrests. These help with transferring and getting in and out of them.
• Install handrails along walls and hallways where there is nothing to hold on to.
• Install a stationary pole to help her get in and out of bed. .
• Install an elevated toilet seat and position handrails to help her stand up or sit down.
• Replace regular faucets handles with extended levers since she has trouble grasping and rotating.
• Put handrails in the walk-in shower and place a non-skid mat in it.

These are all simple fixes and adjustments. What worries me most is her adjustment to decline. It seems to speed up now and Ellen’s doctor keeps high hopes for her new life, which she’ll need as she becomes more dependent.

Friday, July 3, 2015

Hydration, Part 2: Getting Enough to Drink

Last week's blog was about how important it is for our loved ones to get enough to drink. This week we get down to the nitty-gritty and talk about how to make that happen.

Martha told her support group, “I know it is important that Dean gets plenty to drink but he forgets. What can I do to get him to drink more?” Other members agreed that this was a problem for them too and the list of reasons grew to include pickiness, fear of aspiration, poor motor control, and resistance because “then I’ll have to pee.” Here were some of the ideas the group came up with:

Develop a routine where you offer water or other fluids on a regular basis. Since a loved one is often unaware of the importance of hydration, just having drinks available may not be enough.

Use verbal and visual cues. Ask your loved one it they’d like a drink. Hang pictures of people enjoying a drink of water where your loved one can see them.

Be a role model. Caregivers need to stay hydrated too! If you are also drinking, you loved one will be much more willing to drink up.

Make it a social event. Ask visitors, family members and friends to suggest taking a drink. Have fluids available for them to drink with your loved one too.

Offer help as needed. Caregivers become great at offering such help in a matter-of-fact way that is easy for a loved one to accept with dignity. But remember that LBD fluctuates. At times when a loved one is less helpless, step back and let them be independent—if messy. That’s sometimes more difficult for a caregiver to do than helping!

Know your loved ones drink preferences and cater to them as much as you can. Experiment with a variety of food and fluid options to find other favorites.

Know your loved ones temperature preferences. For example, some people won’t drink water unless it is very cold—others refuse to drink it with ice cubes. Some prefer hot drinks, but always make sure it isn’t too hot. (The ability to tell if a drink is too hot is another skill that may be fading and a loved one could easily a tongue—or worse.)

Make it appealing. Make flavored ice cubes by pouring juice or mashed fruit into a freezer tray. Add a little fruit to the water…a few berries, a slice of watermelon or peach—any fruit will work. Try adding spices or essential oils, like ginger or rosemary. (If you use essential oils, be sure to use the ones with labels that say they can be ingested. See LBDtools.com for more about essential oils.)

Add variety. Make water the main fluid, but add a variety of others, such as coffee, milk, teas and juices, depending on your loved one’s likes and diet restrictions.

Use food. Offer foods with more fluid content like broccoli, yogurt, melons, and gelatin. Soups are also good. Offer smoothies, shakes, ice pops and sherbets instead of drier desserts like cake or pie. It all adds up.

See a speech therapist if choking has become a problem. Just one or two sessions can teach you and your loved one some skills that will greatly decrease choking. The speech therapist may also suggest thickened fluids. These are easier to swallow.

Always offer fluids with dryer foods such as cookies or toast.

Use a container that makes drinking easier and spills less likely. Drinking cups are available with large easy-to-use handles. Also a closed container like a sports bottle with a straw or a Sippy cup. If the container is clear, it acts as a cue and you can monitor the level of the fluid as well.

Use persistence when a loved one fears that drinking too much will lead to excessive bathroom hassles. Adequate hydration actually improves kidney function and decreases urges to void. However, your loved one may not be able to reason well enough to understand this explanation. Instead, offer fluids again in a short while. You can also assure your loved one you will be there to help with the "hassles" as needed.

Take water along when participating in activities. Exercise increases the need for fluids.

Make sure your loved one doesn’t get too hot. Avoid overdressing and when outside, avoid hot sun and seek out shade. When a person’s inner thermostat doesn’t work well, what is too hot for the caregiver may be comfortable for the loved one, and so look for signs of mild dehydration (see previous blog) before assuming that your loved one is too hot.

In a care facility, make sure staff is not simply setting a pitcher and glass near your loved one and assuming that will do the job but offering fluid on a regular basis (hourly or so) even if your loved one is capable of pouring from the pitcher.

Much of this is from the NCCDP - ICCDP Summer 2014 Newsletter and the European Hydration Institute 

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia


Friday, June 26, 2015

Hydration, Part 1: Why It Is So Important

This week’s blog is about why hydration is so important, why it is a problem with our loved ones and how to recognize dehydration when it occurs. Next week will be about how to make sure your loved one stays well hydrated.

Maintaining adequate fluids rates high among those things that decrease dementia symptoms, right up there with exercise, good nutrition, adequate sleep and stress management—and it is probably the easiest to do. Good hydration facilitates blood pressure and body temperature regulation, heart function, digestion, elimination, skin health—and brain function.

Conversely, poor hydration thickens the blood and impairs circulation, which makes the heart work harder. The thicker blood can’t transport enough oxygen to the brain and confusion increases. Without adequate fluids, digestion becomes sluggish, causing distention cramps and constipation. The body draws fluids from the skin for more urgent functions like those mentioned above, and the skin becomes dry and fragile.

Dehydration occurs when a person doesn’t drink enough fluids but it can also happen due to vomiting, diarrhea, excessive sweating or urination, fever, burns, chronic illness, diuretics, depression and exercise. Dehydration from air conditioning can cause dry eyes, itchy skin and parched lips.

Don’t expect your loved one to report thirst.

• Age and frailty causes one to eventually lose the ability to recognize thirst, even when cognition is not impaired.
• With LBD, a person can be thirsty, but know only that they feel uncomfortable. Add decreasing communication skills and reporting thirst becomes even more difficult.
• Many people take medication for high blood pressure and other heart related issues. Most of these drugs have the same effect.

These physical reasons are just the start. Your loved one may not be drinking enough for a variety of other reasons, including:


Forgetting to drink. Without a thirst reflex, this can be expected.
Not understanding or caring how important fluids are. As cognition goes, so does the ability to judge the importance of drinking.
Resisting drinking for fear of choking. This is a valid fear. Choking can lead to aspiration, pneumonia and death.
Being physically unable to wait on oneself and unwilling—or unable—to ask for help.
Not liking the taste of water.
Fears that drinking fluids will increase the need to void, and add to bathroom hassles.

Signs of even mild dehydration can include thirst, dry mouth and or tongue, dizziness, headache, weakness, fatigue, constipation, decreased urine output, confusion, concentrated yellow urine, rapid heartbeat, cramping of legs, no tears, irritable, excessive sleepiness and lethargy. For the person with LBD, another sign of dehydration is increased acting out. (Remember, acting out is the communication of some kind of discomfort.)

Since you can’t depend on your loved one to drink enough on their own to stay hydrated, this becomes the caregiver’s job. Maintaining good hydration involves being alert for the above signs of dehydration, knowing your loved one’s favorite drinks and the temperatures preferred as well and developing a drinking routine where fluids are presented regularly in an attractive fashion. Next week’s blog will include a variety of suggestions and ideas for making sure your loved one drinks enough fluids.

From the NCCDP - ICCDP Summer 2014 Newsletter and the European Hydration Institute 

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Friday, June 19, 2015

What Not to Say to a Caregiver

This week’s blog is from Lisa Cooke’s Lewy Warriors blog. Next month, I’ll post her blog “How to Help a Caregiver.” Lisa is an active LBD caregiver and has good stuff to share.

We’ve all been there. That uncomfortable conversation with someone who is providing care or dealing with an illness, and we don’t know quite what to say. Do we ask about their situation and risk upsetting them, or do we ignore the elephant in the room and risk upsetting them? Either way, we’re doomed because people in tough situations get upset rather easily. They’re usually exhausted and their nerves are frayed beyond repair.

Recently, I asked the members of an on-line caregiver group for examples of things they wish people would stop saying to them and the responses I received were surprising. I had assumed I was the only one who felt the hair stand up on the back of my neck over silly things people say that shouldn’t matter to me. Boy, was I wrong.

I’ve compiled the list below and attempted to explain why these seemingly innocent comments make many caregivers cringe. You might want to send this to friends or family members who just don’t get the picture.

“You need to take care of yourself.” Oddly enough, this comment was mentioned more than any others by the caregivers. Seems strange that something a person might say in an attempt to sound supportive actually hits the proverbial nerve, until you think about the statement.

First, it’s said so often to caregivers that it borders on cliché. Caregivers know they need to take care of themselves. They read the same articles everyone else does and telling them to do it brings forth a strong urge to say, “Duh.” But the people offering that sage advice fail to offer a plan for how exactly to “Take care of yourself.” How is a caregiver supposed to do that? If their loved one is well enough to be left alone, they don’t need to take a break. If the situation is all consuming, the caregiver either has to ask someone to relieve them or hire an aid so they can take care of themselves. (From Helen: Many blogs on this site are about just that...how to go about taking care of yourself. So important, but just saying it without offering help is understandably annoying!)

Finally, telling a person to “Take care of yourself” feels like a command. On top of everything else the caregiver has to do, now they’re supposed to squeeze in respite somewhere along the way, and if they can’t then they aren’t doing the caregiver thing correctly.

“I read on the internet about this new treatment that can reverse his illness.” or “If she would just exercise and eat right, she’d get better.” Most caregivers are very well read on their LOs illness. It’s doubtful you’ve read something we haven’t seen months or even years ago. We also know about the physiology of the brain. According to the national Parkinson’s Foundation, at the time of diagnosis, more than half of the brain cells producing dopamine are already dead. Those internet treatments will not make them come back to life. If a treatment has merit, our doctors are using it. Most caregivers are diligent in their research and attempts to find something to help their loved ones. They’ve read countless books and talked to other caregivers for tips and ideas. Telling them you’ve found a cure in your twenty minute browsing session is like saying you know more about the disease consuming their lives than they do.

“I know how you feel.” Nope. Impossible. You might have been in a similar situation or maybe knew someone with the illness, but you are not in our shoes. You don’t know about our personal relationships, financial struggles, emotional trials, or any of the other aspects of our battle. And please, whatever you do, don’t compare what we’re going through with an illness suffered by your pet.

“You look really tired.” Thanks. It’s nice to know that on top of everything else, I look like crap.

“S/he looks good to me.” Of course he does. I’m totally lying about his condition. Of course, you’re seeing him at his best because at his worst, we can’t go out in public. He’s also a master at showtiming. If you’re not familiar with that term, that’s when our loved one kicks into his or her best behavior because there’s company around. They don’t do it intentionally, it’s just a natural response to do your best around other people. Once you leave, however, he will crash. The show will wear him out and he will sleep for hours. One of the caregivers in our group says when someone tells him his wife looks good, he responds with, “You would too, if I were your caregiver.”

“Is s/he getting any better?” Nope. Our loved ones have a progressive neurological disease. Progressive diseases progress. You can quote me on that.

“I hope you’re taking him to a good doctor” or “Are you taking her to a specialist?” ::ahem:: Yes. We’re aware we need to take our loved ones to specialists. One of the caregivers in our group was asked that question by a case worker in the healthcare system. Her response was, “That’s a stupid question.” And it was.

“How long is she going to live like this?” Or “If I’m ever like that, I hope someone shoots me.” Despite all the difficulties and challenges we face with this disease, please don’t forget you’re talking about someone we love very much. Imagine if someone made those comments about you.

“Are you sure she needs to go to an assisted care facility?” Or “Can’t you just take care of him in your home? Why are you selling the house where you raised your children?” Gee. I hadn’t really given it any thought. It just sounded like fun. No caregiver wants to place their loved one in a nursing home or to give up their home. It’s every caregivers wish to keep their LO home, but the facts are that eventually there comes a time when the caregiver needs help. If they can afford hiring 24/7 aids to come to their home, then that might be an option.

But the bottom line is that unless you are willing to move in with them to help with the care, don’t judge. The decision to move our loved one to a facility, or to sell our home is one of the hardest we have to make. Hours of research, sleepless nights, and tears go into that decision. It’s not taken lightly. One member of our support group said her daughters thought she shouldn’t sell their family home and move to a one story, despite the fact their home was two stories and she couldn’t get her husband upstairs to the bathroom. They said, “Dad wanted to stay here until he died.” She replied, “But what am I supposed to do with him between then and now?”

“If I were in your shoes, I’d be really depressed.” Or “I feel so sorry for you.” Staying positive and upbeat is the hardest challenge we face. Despair and depression are always at the edge, creeping toward us like a reptile. We don’t need or want pity. Call it pride, or whatever you want, but don’t remind us that we’re pitiful. No one wants to be thought of in that manner.

“You’re a saint.” Or “You’re so brave.” Not even close. There are days we want to run away, screaming like banshees, but that’s not an option. No one chooses to have this thrust upon them and even though you might not believe it, you would do what we’re doing if you were in our situation. I don’t know who it was who said, “You never know how strong you are until being strong is the only option you have,” but I’ve found that to be so true in recent years. Or as my mother always said, “You just do what you gotta do,” and Momma was right.

Thanks, Lisa. Readers, feel free to comment on your own pet peeves!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Friday, June 12, 2015

The LBD Caregiver's WALK

We recently heard a motivational speaker talk about how we should "Walk, not Run" on our journey through life. She talked about taking time to pay attention to what's going on around us, to relate to nature and to people, instead of whizzing past at 50, 60, 70 miles an hour. We are so focused on the tasks and what we need to do next, we miss what's happening right now. Then she said that WALK can be an anagram for how to live travel our life's journey:

W is for witnessing, that is, going slow enough so that we can actually see what's going on in our lives.

A for accepting what is happening on our journey. We don't have to like it, but we do need to accept it to be able to move on.

L is for loving ourselves and those around us. For traveling with a generous giving, outpouring love.

K is for knowledge that we gather along the way, knowledge that helps us learn to live happier, more fulfilled lives.

As I listened, I thought of how this pertained to the caregiver's journey.

No one will argue that a caregiver's job is easy, or that you ever have enough time to get it all done. But still, as any dementia caregiver knows, slowing down is part of the job. Yes, it works much better with your loved one, but it helps you to focus on the here and now as well. Take your time and enjoy every minute you can. Enjoy the kind word from your neighbor, the sunset, the tasty meal, and especially take time to enjoy being with your loved one.

WALK works for LBD caregivers too:

Witness. Every caregiver needs to be a witness, a careful observer, a sleuth. When your loved one cannot communicate well verbally, this becomes critically important. When you learn and read behavioral cues, watch out for environmental roadblocks, and generally be aware, your loved one wont' be so frustrated or agitated--and behaviors will decrease.

Acceptance. Every Lewy team has to learn and practice acceptance. You don't have to like it, but accepting that this is your journey makes it possible for you to find ways to make the journey smoother, and even enjoyable. Acceptance is seldom a done deal, by the way. It has to happen over and over, and the disorder changes, and other things change.

Love. Every caregiver needs to do their job with love. Our friend Joy commented, "I don't know how you'd do this for someone you didn't love. It's hard enough for me and I dearly love my husband." She is right. If the person you are caring for is someone you normally wouldn't like, that's all right. Mary is her mother-in-law, Carrie's caregiver. They've never been great friends and have very different values. But Mary still must find a way to LOVE her mil, to see the lovable person hidden there somewhere. If she can't she will feel resentful and angry and Carrie will pick that up. She will express her unhappiness with behavior--because that's what a person with dementia does--and Mary will feel even worse. If Mary can't find a way to love Carrie, maybe she should not be her caregiver.

Knowledge. Especially with LBD, learning everything you can about this baffling disorder makes your journey safer, and easier too. You are the buffer between medical staff who may not know about LBD's drug sensitivities. You are your loved one's advocate. You know how to provide comfort more easily. But you can't do these jobs well if you don't understand the disorder and your loved one's unique responses to it. Read, search the internet, go to support groups, learn and yes, share. Sharing is another way of learning!

And so take the time and the effort to WALK through this LBD journey. Take the time to be observant, be willing to accept, and serve with love and knowledge.

For information about Lewy body disorders, read our books: