The Whitworths of Arizona, bringing science to you in everyday language.

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.