Ten Years, Four Books and a Lot of Love!

This week we’ve been married for ten years and so I’m taking time to share some history.

After Jim’s first wife, Annie, was diagnosed with dementia in 1998, he retired from his job in the Silicon Valley and became her caregiver. To this day, Jim believes that the medical profession’s lack of knowledge about LBD and its drug sensitivities decreased both the quality and the length of Annie’s life. He became an early member of the Yahoo LBD Caregiver’s Group, a charter member of the Yahoo Caring Spouses Group, and was actively doing all he could to spread the word about LBD.

Annie passed in early 2003. That same year, he and four other LBD caregivers founded the Lewy Body Dementia Association. Jim was its first president. The next year, he moved to Arizona. Jim and Annie had been square dancers for years before her dementia made it too difficult and so he knew square dancing was a good way to meet people. When fall classes started, he became a “retread”—that, is someone who had returned to the sport after a period away. I was one of the people he met.

We connected right away. Like Jim, I was a retread. I’d been a caregiver, too. My husband died with lung cancer in 1997. Then  in 1998, about the same time Jim retired, my sister, Lucille, became terminally ill with colon cancer. I took an early retirement from my substance abuse nurse/counselor job, left Alaska where I'd lived for 27 years, and moved in with her. In the nine months we had together, I learned to appreciate the help that hospice provides. Lucille also had Parkinson’s, but even after 20 years, she showed few signs of dementia. She did occasionally hallucinate and become irrational, especially after being medicated for pain. It wasn’t until I met Jim that I understood that Parkinson’s was a Lewy body disorder and that these symptoms were due to a Lewy body-related sensitivity to her pain drugs.

When Jim and I met at that square dance class, I was living in Washington and wintering in Arizona. I’d started in Washington and found a class in Arizona where I could continue. It was the same one Jim was taking. The instructor put us together for my first dance…and we’ve been together ever since. By the spring of 2005, when classes ended, we were engaged and in August, we married.

We eventually decided to live in Jim’s home in Arizona and travel to Washington in the summers to avoid the heat. Our spare room was filled with boxes of fliers that the LBDA had ordered in a large quantity—to save money. When we needed a bed for an overnight visitor, we moved the boxes together and laid a twin mattress on top of them. Less than a year later, information had changed so much that the LBDA published new brochures even though there were still enough boxes filled with the out-dated brochures to support the mattress. We tossed them and bought a real bed.

Just as Jim’s mission was to spread the word about LBD, my dream was to travel and teach. A perfect match! We bought a used RV and began traveling from our home in Arizona to Washington for the summer. Along the way, we talked to care facility staff and caregiver support groups and anyone who would listen. I’d also been a writer for years, for fun and work. Eventually, those annual trips eventually resulted in the book, On the Road with the Whitworths. It’s an entertaining book, not a resource book. However, caregivers need to relax now and then and so we believe it is worthwhile.

But there was a need for a resource book too. A recurring refrain from caregivers was that they wished the people who cared for their loved ones knew more about LBD. This led to our self-publishing Riding a Rollercoaster with Lewy Body Dementia in 2009, targeted towards care staff. When we submitted it to Demos Health Publishing, their editor said, “Care staff don’t buy books, family caregivers do.” and asked us to rewrite the book for that audience.

In the meantime, we took the Rollercoaster book and took it on a summer tour and proved the editor right. Between our tour and the internet, we sold 500 books—mostly to family caregivers. In October, 2010, A Caregivers’ Guide to Lewy Body Dementia was published and began receiving good reviews immediately. In 2012, it received a Caregiver Friendly Award from Today’s Caregiver magazine and website. To date, over 5000 copies have been sold, but more importantly, we’ve heard from many, many caregivers about how helpful the book has been. Jim feels blessed that his ongoing mission is so successful and I am honored to be a part of that journey.

Now we are reaching out to other people dealing with Lewy body disorders, especially to those with Parkinson’s. Our new book, Managing Cognitive Issues , helps families recognize the symptoms that warn of encroaching cognitive symptoms, explains the dangers of drug sensitivity and provides some alternative methods for dealing with the disorder’s troublesome symptoms.

Who knows what will happen next!

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

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

For fun and to learn more about us, read On the Road with the Whitworths.

Dealing with Doctors

A caregiver's life includes many visits to a variety of doctors. There's the primary of course, then there are all the specialists. In the past, we have discussed how to choose a doctor. (The most important thing is to choose one who listens to YOU, the person who is directly involved in your loved one's care!) This blog is about how to deal with the doctor you've chosen.

Getting an appointment. What do you do if you feel your loved one needs to see a doctor sooner than an offered appointment date? You can always go into the hospital ER, but that isn't necessarily a good choice for someone with LBD. You really need someone who is familiar with your loved one's unique responses to drugs and other issues.

Barry started waking up and staying awake most of the night and then sleeping a lot during the day. Darla called his PCP but the earliest appointment was in two weeks. I asked to speak to a nurse who told her nothing could be done until the doctor saw him. Darla didn't accept this. She was polite but voiced her concern about having to wait so long. "I'll see what I can do and call you back," the nurse finally said. She called back in an hour with an appointment in two days.

Caregivers have to step up and make themselves heard. You will be surprised to find that usually, you WILL get results.

Preparation. Your visit will be better if you come prepared. What do you want to ask? What are the specific symptoms and behaviors? This is where your daily journal comes in. This doesn't need to be a lengthy thing. In fact, you can use a calendar to jot down pertinent information in a few words, along with a time of day.

Darla had been using her calendar to record when Barry got up and when he when he went back to bed (as best she could remember in the morning), and the times he napped during the day. This record, along with a list of the drugs he was taking and their times provided his doctor with the information he needed to adjust Barry's medications so that his sleep cycles were better regulated. 

Getting the doctor's attention. Doctors are busy, with little time between appointments. Keeping a daily journal is great for helping the caregiver to collect information, but it needs to be boiled down into a more easy-to-read format for the doctor. Darla's calendar list of sleep behavior worked better than detailed journal entries, a long email or a drawn out verbal narrative would have. Barry's doctor asks caregivers to use a 3x5 card to write out their chief complaint, with as few words as possible, while still being clear about what the problem is.

Darla's card read, "Barry has started waking up and staying awake most of the night. Even though he sleeps a lot during the day, he doesn't feel rested." 

These two short sentences gave the doctor a jump start towards knowing exactly what issue was bothering Darla and Barry most.

Working with other specialists. Don't expect your loved one's internist, podiatrist, cardiologist, or sleep specialist, etc. to know about Lewy's unique symptoms, even those related to their specialties. They may, but don't expect it. A doctor will make the best diagnosis they can and then move on to treat that issue. At that point, they often stop looking for clues that might connect it with another disorder.

Prior to seeing a dementia specialist, Barry saw a sleep specialist for his disrupted sleep cycle. The specialist diagnosed sleep apnea, based on Barry's thrashing of limbs while asleep. He prescribed a mask for breathing assistance. Barry was unable to understand how the unfamiliar mask could help him sleep and refused to leave it on.

While sleep apnea can occur with any dementia, REM Sleep Behavior Disorder (RBD or Active Dreams), is a unique symptom of LBD. A Lewy-savvy doctor would have considered active dreams first. Not only is RBD more likely, its treatment will be easier for Barry to accept.

Drug sensitivity. Don't expect any doctor not specializing in dementia to know about Lewy's drug sensitivity. Or they may know, but need a reminder. Always mention your concern about  Lewy's drug sensitivity and tell the doctor of any personal issues. They will usually respond with a safer alternative if necessary.

The sleep specialist offered to prescribe a sleep aid for Barry when he wasn't able to wear the sleep apnea mask. Darla reminded him of Barry's LBD and voiced her concern about sensitivity, adding that he had reacted poorly to Haldol in the past. "This isn't nearly as strong as Haldol," the doctor said, "but let's try melatonin instead. I've read that LBD patients can tolerate it." 

For the LBD caregiver, doctors visits are a cooperative experience. You know your loved one best, while the doctor has valuable specialized training. Speak up, voice your opinion and ask questions. If a doctor asks your opinion about various treatments, consider this a sign of good doctoring, rather than a lack of knowledge. Be willing to share honest impressions--and be glad you have a doctor who includes you in the treatment team. Your loved one is likely getting the best possible treatment!

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

How PD Drugs Interact with Cognition

Many people with LBD start out with Parkinson’s. They may have been using PD drugs successfully to improve mobility for a long time. Then as the disorder progresses into LBD, these drugs can begin to cause more problems than they solve.

To understand why, it helps to know how dopamine (DO) and acetylcholine (ACh) interact. These chemicals are both neurotransmitters (NTs) that pass messages from one nerve cell to another. Different NTs in different parts of the brain pass different messages. For instance, dopamine in the midbrain controls small motor function. ACh is in several parts of the brain, but in the cerebral cortex, it controls cognition. These two NTs operate on a ratio system. Think of a teeter-totter. When dopamine levels go up, ACh levels appear to go down even when they haven’t really changed. Conversely, when ACh levels go down, dopamine levels appear to go up, even when they haven’t really changed. It’s the ratio that counts, not the actual amount. We call this the DO/ACh balance. (See the 8/23/13 blog for some photos and another discussion of this same subject.)

Parkinson’s occurs when Lewy bodies invade the midbrain and decrease dopamine. However, no neurotransmitter can cross the blood brain barrier (BBB), and so doctors can’t just add more dopamine. Instead, PD drugs work around this problem in several ways: by using: a precursor to replace dopamine, enzyme inhibitors to preserve dopamine, dopamine agonist to mimic the NT, or an anticholinergic to maintain the DO/ACh balance. The drugs named below are not necessarily the only ones in that class, but are examples of those most commonly used.

1. Replace. These drugs end up replacing or adding dopamine.

Sinemet: (carbadopa/levadopa) Levadopa,is a precursor to dopamine. Unlike dopamine, it can cross the BBB. Once in the brain, levadopa is converted to dopamine. However, in practice, the large doses required can cause unwanted side effects. Adding carbadopa, which inhibits the enzymes that break down levadopa, allows the use of smaller doses. Sinemet is drug most commonly used to manage PD. It tends to become less effective with long use, and its effect on physical symptoms can become erratic.

Symmetral: (amantadine) is an anti-viral drug thought to increase dopamine levels while inhibiting its breakdown. Tolerance to the drug develops quickly, making it less effective. It is seldom useful for very long.

Cognitive issues. As Lewy bodies migrate into cognitive areas where acetylcholine is the active neurotransmitter, Sinemet can tip the DO/ACh balance so that cognitive dysfunctions may occur. Research has shown that early hallucinations and confusion in PD patients are most often drug-related. A reduction in Sinemet dosages frequently decreases or stops these symptoms. However, PD is progressive. The symptoms will probably reappear at a later date, at which time dementia drugs should be considered.

2. Preserve. These drugs work by inhibiting the enzymes that break down levadopa or those that break down dopamine.

Drugs like Comtess (entacapone) inhibit the enzyme, catechol O-methyltransferase (COMT). They act much like carbadopa to reduce the breakdown of levodopa before it becomes dopamine. This allows more dopamine to be manufactured and released into the system. This drug might be used to assist the action of carbadopa.

Drugs like Azilect (rasagiline) inhibit the enzyme Monoamine-oxidase B (MOAB). This decreases the breakdown of dopamine after it is manufactured. They are often used as an adjunct to Sinemet. They can greatly improve and smooth out the functioning of Sinemet.

Cognitive issues. As with Sinemet, these drugs will tip the DO/ACh balance and appear to decrease the level of ACh. They often work well until the disorder progresses into the cognitive areas of the brain, at which time cognitive symptoms can appear or increase. The MOAB inhibitors tend to cause fewer problems than the COMT inhibitors.

3. Mimic. These drugs are dopamine agonists (chemicals that act like another chemical.)

Drugs like Requip (ropinrole) mimic the action of dopamine and allows better control of PD symptoms. This drug can be used alone in early PD or as an adjunct to Sinemet as it begins to show fluctuations in effectiveness.

Cognitive issues. As the disorder progresses in the cognitive areas of the brain, these drugs tend to increase dementia symptoms but the effect is seldom permanent. Symptoms disappear when the drig is stopped.

4. Balance. These drugs change DO/ACh balance ratio by decreasing acetycholine. They are called anticholinergics. LBD caregivers learn early on to avoid all anticholinergics because they trigger LBD drug sensitivity symptoms, where a drug acts adversely or as an overdose.

Artane (disipal) has been used with PD to increase the ratio of dopamine to ACh. These drugs are not used much anymore because they cause too many side effects.

Cognitive issues. The direct reduction of ACh by these drugs is the most likely of all to cause cognitive problems and to cause them earlier than other PD drugs do.

The bottom line is that for any PD drug to work, it must in some fashion change the DO/ACh balance ratio so that there is, or there appears to be, more dopamine in the system—and thus, less ACh. This process usually works work well until there is cognitive involvement. Then the lack of (or apparent lack of) ACh causes an increased loss of cognitive functioning. The good news is that this drug related loss lasts only as long as the drugs are in the body. At this point, doctors work to help their patients balance mobility with cognition. For instance, benign hallucinations might be tolerated for better mobility, but scary ones might justify fewer PD drugs even though mobility will be greatly decreased.

References:
Family Caregiver Alliance Fact Sheet: Parkinson’s Drug Therapy & Drug Research.

Klein JC, et al. (2010) Neurotransmitter changes in dementia with Lewy bodies and Parkinson disease dementia in vivo. Neurology. 2010 Mar 16;74(11):885-92.

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


Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

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

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

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.

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