Friday, August 28, 2015

Staying Active

In the summer, we stay at RV resorts a lot. On Saturdays, they usually have a breakfast where Jim gets to fill up on pancakes. A while back, we met Dorothy and Ben at one of these Saturday breakfasts. We connected and sat visiting for a long time. Ben was very open about his PD and MCI. Both were making an effort to keep on doing the activities they've enjoyed for years, even though they understand that they have to adapt along the way. A big adpation came when they quit full time RVing. Now they they just go out to RV parks close to home for a week or so at a time--and Dorothy drives. A few days later, we met again, to play a card game. It was a game Ben's been playing  every day for years and we all had a good time.

It didn't go so well, when Dorothy and Ben came to the clubhouse one evening to play another card game. It was similar to one they were used to playing, but even with help, Ben was lost. Although the other players were patient and accepting, the experience was embarrassing and discouraging for Ben. Eventually, he just quit. “I’m going to go walk the dog,” he said and left us to our game. That evening Dorothy and Ben learned some important lessons.

• Dorothy and Ben knew that a new game would be beyond his abilities. However, they thought that since this game was similar to the one he already knew, he’d be able to learn it. Not so; his MCI had become so advanced that the new rules were just as confusing as a totally new game would have been.

The lesson: Don’t add new rules to an old game or task. This is as bad as trying to teach your loved one a new task or game. Both will lead to discouragement and possibly, quitting altogether. Actually, you CAN teach a person with early to mid LBD something new. But it needs to be done in very small increments and with many, many repetitions. A normal person needs to repeat something about six times to learn it. Double or triple that for someone with LBD. But remember that your loved one with LBD can also have Alzheimer’s, where memory is more of an issue. If AD is involved, learning will likely not happen.

• The new group was comprised of seven people, far more than our the cozy group of two couples that Ben had been playing with the previous day.

The lesson: Three people are about all a person with MCI can deal with. Maintaining focus is already an issue, and adding more people becomes too distracting. Keep the group to no more than four, including your loved one.

• The new people were strangers. Dorothy and Ben had never met them before, although we all belong to the same travel group and have similar interests.

The lesson: Having to deal with strangers, even friendly strangers, increases anxiety. New people should be introduced one or two at a time, with the people being the focus, not an activity, such as a busy card game.

• These people were accepting of the “beginner” in the group, but became restless when he didn’t catch on, time after time.

The lesson: It is important that participants understand going in that the goal is to socialize and enjoy the game, not to play well—or quickly. The easiest way to do this is to make up your party of friends who already know your loved one. For instance, a golfer with MCI might limit his playing mates to a few buddies who are aware of his abilities.

• The card game was in the evening, when Ben’s thinking abilities were at their lowest.

The lesson: Play in the morning when thinking levels are at their best. If that isn’t possible, consider playing in the early afternoon, after your loved one has had a nap.

Dorothy and Ben almost always go everywhere together. By mutual agreement, they always have. But now that Ben had become more dependent, Dorothy would like to get out on her own occasionally. For example, she’d like to play games that are more challenging than Ben can now play.

The lesson: Develop a ritual of "girl's (or guy's) time out" while your loved one is still able to stay home alone, You might arrange to meet with friends once a week to play cards, go to lunch, or just visit. When your loved one can no longer stay alone safely, don't give up your respite time. Instead, arrange for someone to come and visit with him while you are gone. Respite times are a must for all caregivers.

Dorothy and Ben are also doing a lot of things right. Next week, the blog will be about this.

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, August 21, 2015

The Long Slide

You expect LBD to fluctuate. That’s one of its defining symptoms. But, then there comes a day when functioning takes a long slide downward, with a lot more confusion, agitation, sleep problems and less mobility.

When this happens, the caregiver won’t be able to think clearly either. “I told myself that fluctuations happen and upturns follow downturns,” Mary said. “Until that last slide, Lloyd still had wonderful periods of alertness. I couldn’t believe that would end anytime soon. I knew that with LBD, a downturn could be steep and that a person seldom returned to their former functioning. But I guess that I felt that planning for such a slide was inviting it to happen. And so when it did happen, I wasn’t prepared. I was overwhelmed with the extra work and the additional worry but I didn’t even recognize that I was in crisis too until a friend asked me if I didn’t think it was time for more help.”

Any number of situations can bring about these sudden downturns: A simple cold or a serious kidney stone attack; a fall or a painful injury; ongoing problems like UTIs, dehydration or even a supposedly good thing like too much excitement over a happy event. Or even nothing identifiable. A healthy, low stress lifestyle can extend cognition and improve quality of but it does not necessarily extend life. When reserves built up by careful living are gone, mind and body degenerate very quickly. It is no one’s fault. It is simply the nature of the disorder.

As when your loved one can no longer make their own decisions, this is another turning point for which it helps to prepare, earlier than later. Like Mary, it is easier to think that things will go gradually downhill, with expected fluctuations but nothing drastic. They likely will, perhaps for years. But the chances are that eventually, a slide will happen. What will you do then? How will you deal with it when all of your energy, time and attention are taken up in dealing with these new, overwhelming problems? Preparation for a downturn does not mean that you expect or want it to happen. It means that you know it could and that by being prepared, you won’t add to the problem by being so stressed. Think of such preparation as insurance—something you hope you never need but will be very grateful for if you do need it.

As it did with Mary, a downslide tends to sneak up on you, adding work and worry. Before you realize it, you will be so embroiled in just getting by day to day that you may not recognize how stressed you really are—or know what to do about it if you do recognize your stress. Thus, the first step in preparation is setting up a system that will help you recognize that this downturn is different from those in the past.

Make a list that you check daily. If you answer yes to any of these questions, it is time to call for help:

• Has it been more than a week since the slide, with little or no recovery or worse, more decline?
• Am I are feeling overwhelmed by the physical requirements of caregiving?
• Am I getting so little sleep that my caregiving has suffered. Am I less patient or easier to anger?
• Do I feel that there are not enough hours in the day for everything I need to do? Do I seldom take anytime just for me? Am I too tired to enjoy it when I do?
• Am I still un-revived by a few hours of respite? Do I come back still feeling overwhelmed, anxious or tired?

Of course, knowing that you are stressed simply creates more stress unless you know what to do about it. Next week will continue some ways you can prepare for that long slide, and have the information you need ready to use when the time comes.

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.

Friday, August 14, 2015

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

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

Friday, August 7, 2015

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.

Friday, July 31, 2015

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.

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.

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