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

Thursday, January 31, 2013

The Stress Process

We have blogged about stress before and shared ideas for reducing it. But today, our blog is about how stress happens, with the hope that knowing this process, and the special issues that you and your loved one face, will give you a head start with stress management.

Excessive stress isn’t good for anyone. It is internalized into problems like anxiety, high blood pressure and headaches. Over time, stress greatly increases the risk for most illnesses—heart problems, diabetes, cancer, and much more. The more intense the stress and/or the longer lasting it is, the greater the risk. For Persons with Lewy Body Disorders (PwLBD)* stress is even worse. Without the resources that a healthy person has, they become stressed much easier and quicker.

Reducing stress is one of the most important things you can do for your loved one: more important than drugs, as important as getting enough sleep and fluids, as important as exercise.  Of course, they aren’t necessarily separate entities—all of the above, especially exercise, can also reduce stress.

The healthy body’s normal response to a threat or challenge is to direct the autonomic nervous system (ANS) to prepare for fight or flight:

Perceptual abilities increase so that you can sense what’s happening and respond quickly.

The heart rate (pulse) and breathing speed up, and blood pressure increases, sending more oxygen-carrying blood to the large muscles.

Large muscle tone increases. You can now hit harder, lift higher, or run faster.

The PwLBD can easily misinterpret an event as a threat and even though they may usually be fairly weak, they now they have additional strength to “protect” themselves. That’s what happened when Janie got hit in our Jan 4th blog. That kind of response can happen when the body has the resources to respond. But often, Lewy has compromised the ANS so that the demand for increased performance quickly becomes greater than the body‘s ability to respond, and the stress is internalized—turned into illnesses, and with LBD, increased symptoms. There will be more hallucinations, more delusions, etc.—and even more stress.

 The ANS also decreases resources for  thinking and the immune system, which are less involved with fighting and fleeing:

Thinking. Taking time to think could get the caveman killed by the attacking saber toothed tiger. He had to rely on learned responses. We still do today; our ability to think creatively or see associations during stress is impaired. First response people practice, practice, practice so that they can respond to a crisis without thinking about it. You can see why a PwLBD, whose thinking is already impaired and who already acts from impulse rather than reason, functions poorly during stress.

The immune system. Immunity is a long term process and the body can safely shut it down for short periods so as to have more energy to fight more immediate battles. LBD tends to increase the frequency of infections already. This puts your loved one at even more risk.

All of this makes it imperative for everyone involved, from the PwLBD to caregiver to family to medical community, to maintain a healthy life style and reduce external stress. The earlier you start this process, the better. It can make a huge difference in the progress of the disorder. When external stress is lower, internal stress will decrease as well.

For ways to prevent or reduce stress, see many of our other blogs and our book, A Caregiver’s Guide to Lewy Body Dementia. We also recommend Treasures in the Darkness by Pat Snyder and Living with Lewy Body Dementia by Judy Towne Jennings. You can buy all of these books through the LBD Book Corner on our website. And of course the internet abounds with good articles for basic stress reduction. A couple are 33 Ways to Reduce and Prevent Stress and 50 Ways to Reduce Stress.

*PwLBD: Person/s with Lewy Body Disorders
 PwLB: Person/s with Lewy Bodies: People with LBD, Parkinson’s MCI-LB, or even RBD (Active Dreams).

Saturday, January 26, 2013

Support is Where You Find It

Ursula has been so generous about letting me use her story and now I’m going to be even more intrusive. I’m sure you’ve wondered about the baby’s father. He’s there, back in Europe, but he hasn’t been able to accept the idea of a baby. Their story reminds me so much of caregiver’s stories about those relatives that resist the idea that their loved one might have LBD that I asked to tell it.

They were both successful journalists, traveling all over the world for their stories. Children weren’t an issue--Ursula didn’t think she could get pregnant. And that was all right. She was 37. She loved her job. She loved spending time with (we’ll call him Jack) when she was home. Life was good. But then, she did get pregnant. As the baby grew inside her, Ursula became dedicated to being a parent. Jack pretended nothing had changed. When, at about 6 months, the doctor told her she was risking a miscarriage if she continued working, she quit and started living on her savings. Jack just wanted things to continue as they had. He was blind to her internal changes and because Ursula still wasn’t showing much, it was easy for him to minimize the ones he did see. Ursula left, coming here, where her American family offered her the support she wasn’t getting from Jack.

As the LBD gradually changes your loved one from an independent, reasonable adult into a sometimes disagreeable, sometimes irrational, sometimes even violent, and always increasingly helpless person, you are there. You see and experienced the changes. But like Jack, others in the family may be blind to the changes, minimizing those they do see. “Oh, dad is just tired. We all get cranky when we are tired.” “No, Mom’s not seeing things. She’s just making it all up to get your attention. She’s always been imaginative.” “It was just a bad dream. See he’s fine now.” Like Jack, they are trying to keep things the same. And it isn’t working for you. Like Ursula, you feel unsupported and angry. And you hate feeling angry at people you love…but there it is.

After her difficult delivery, Ursula told Jack about it and the frustrations of being a new mom. She wanted to be able to voice her feelings of weakness, inadequacy, and pain and get understanding from him. Instead she got pep talks. “You are courageous and strong. You can do it.” She wanted him to share her extra expenses. Instead she got weak promises.

On the job caregivers often say of their resistant relatives, “They don’t understand. They tell me they are so glad I’m here, but they don’t offer practical help—money, things to make my work easier, someone to come and stay so I can get away for a while. They think they are supporting me when they tell me I’m strong, that I can do it. But that just makes me continue to feel unsupported—as though they don’t think it is as hard as it really is. I need acceptance of what is, not what they want it to be.”

Ursula did have other support: people who stepped up with practical help instead of platitudes and promises: her “American family,” her mom who flew in from Europe, and even some neighbors. She hesitated at first—she had her pride and was used to being independent. “You have your lives to live,” she insisted. But none of us would have offered if we hadn’t meant it. And so she got the support she needed—not from where she wanted it, but she did get it—or at least enough for now—and we got to enjoy her and our sweet Baby Ian.

Such help is often available to caregivers too. When caring family members, neighbors and friends offer help, it is real—offered in love and concern and shouldn’t be rejected out of pride. Take advantage of this. It may make the difference between keeping your loved one at home or not. But don’t expect them to know what you need. Be clear and concise. Ursula learned that telling her mom she needed her to get up at night when Ian cried and hand him to her to nurse worked much better than saying how much it hurt to get up and expecting her mom to know what she needed. Leave out all the whys. Those are clear enough already. And don’t worry about being able to repay; you can pay it forward eventually. Or, many cases as it was in ours, just the experience is pay enough.

Saturday, January 19, 2013

It Isn't Easy

We spent last week being mom’s helpers and so I’m still in baby mode. New mom or new caregiver, there’s a lot of similarity. When Ursula became pregnant, it was a shock…she didn’t think she could. No more than an LBD diagnosis is expected. Few couples believe this going to happen to them either. It wasn’t the way you’d planned your retirement, no more than she’d planned her future as a single mom. But like Ursula, you took a deep breath, stepped up and said, “I can do it. I know it won’t be easy, but I can do it.” And you do.

It hasn’t been easy. For Ursula and Baby Ian, it’s been like learning a new and often frustrating dance. Ursula thought that with her difficult delivery a fading memory, the worst was over. But then she found that was only the start. First they had to learn the nursing routine. Then, once he finally got the hang of nursing, he didn’t want to quit. He’d found his life’s work! Her milk wasn’t in yet and so he was hungry, Hungry, HUNGRY all the time. No matter that Mom was sore, or tired and wanted to take a shower.

Ian doesn’t understand “night.” He wakes up, like all newborns do, every few hours, day and night. Already, he’s a sociable little guy and so he doesn’t want to just eat and go to sleep. He wants to be held, talked to, sung to, enjoy and be enjoyed. That’s fine during the day, but Mom isn’t getting enough sleep and she’s becoming cranky too. “How can such a little person take up so much time?” she asks.

Does this remind you of the many trials that caregivers have? The belief that the worst is over, only to find out that your journey is just starting; the continually new challenges that sneak up on you without warning? Of trying to meet your loved one’s needs even though you feel overwhelmed. And still finding that there’s more—and that it must be done now, not later, not after you are rested, but NOW. And of course, like Ursula, who’s recovering from surgery and often in pain, you have your own health issues: bad backs, sore knees, etc. We tell her, patience, patience, patience. That’s what it takes. She knows it. You know it. But it is hard to remember that when you are sleep-deprived, hurting and not at all sure of what you are doing in this new world you’ve been thrown into with little preparation.

And so Ursula frets at Ian, “I’ve checked everything. Nothing’s wrong with you. Stop crying and go to sleep.” Or “Why are you so selfish?” or “Why are you picking on me?” She KNOWS Ian is only doing his job of surviving, but especially when she’s at her wits end, it is easy to forget, and to personalize his behavior. She wants him to understand HER problems. And of course, he doesn’t. He only knows what Ian wants.

Mom and baby are the only relationship Ursula and Ian have had. If this new mom can forget that a baby can’t relate except as a baby, imagine how much more difficult it is for the caregiver of a spouse or parent. They are dealing with someone who once did understand and could relate adult to adult, someone who once was aware of more than their own needs. Caregivers use the mantra, “It’s the disease, it’s not my loved one.” And that is so apt.

Ursula is doing a great job. True, there are times when she voices frustration. But always, she is gentle with Ian and caring and with great effort, patient. Never a patient person, this last has not been easy. Likely, you can relate with this too….after all, few of you asked for your job or trained for it either. It just showed up. But like Ursula, you CARE. You love this person for whom you are responsible and there is no doubt that you want to provide the best care that you can. And that’s what it is all about, no matter what the age of your loved one.

Sunday, January 13, 2013

Asking for Help

This last week, we’ve been stressed. My exchange student “granddaughter” gave birth to a beautiful baby boy. It wasn’t easy---50+ hours of labor at home, and 10 more in the hospital finally followed by a C-section. As we struggled through all of the twists and turns thrown at us by this delivery, I thought of the many caregivers out there struggling with Lewy which continually throws you twists and turns, gives you trials you are sure you can't handle—but you do. But eventually, it may come to the place where you need to ask for help.

Ursula so wanted to have a home delivery. She prepared for it for months. But eventually, she had to stop and accept more help. She had to go to the hospital and finally, after a spinal block, she relaxed and went to sleep. “I should have come here sooner, but I felt so guilty—like I was failing.” she said. Later, when they brought the baby to her, even though, she’d gone though surgery, she was rested. She could focus on this new being. She could BE THERE for her little son.

How many caregivers have said “I should  have done this sooner” after they finally put their loved one in residential care?” One caregiver told me, “If I’d only known how much I needed help, or what a better caregiver I’d be when I could be rested and able to really be there for my loved one, I wouldn’t have waited so long.” But, like Ursula, she felt she was failing to even consider it.  Of course, once she’d made the move, she found she was still her loved one’s caregiver. They’d simply moved to a different venue. Now, with someone else responsible for all the physical care, she had the energy to pay more attention to her loved one’s emotional needs. “Of course, he’d rather be home," she said. "But he’s really doing better here and a lot of it is because I’m not so worn out.”

We all want to be the best mom, wife, daughter, husband, caregiver, etc. that we can be. And sometimes,  like Ursula, we don’t realize that we need to ask for more help until we are well past when we really needed to do so. We don’t realize how tired, cranky, frustrated, and even scared we are, until we finally do ask for help. Then we look back with 20/20 hindsight and say, “I should have done that sooner.” There’s no sense feeling bad about that either. Just share your insight with someone else and hope they can use your experience.

Wednesday, January 9, 2013

An Easy Way to Help the LBDA

The Lewy Body Dementia Association (LBDA) is participating in the “Technology Jumpstart Your Nonprofit” contest for a chance to win A $20,000 office technology makeover from Milner, Inc. It’s up to us to help them win: All we have to do is vote once a day every day for the rest of January.

Ten years ago, in late 2003, Jim helped to start this wonderful organization. Right from the first, its goal was three fold: support caregivers, support research, and spread LBD awareness. It has been successful at all of those endeavors. The LBDA now sponsors well over 100 caregiver support groups; it has been involved in many research projects and their webpage is the best lay-source of LBD information in the world. Most of you who read this have benefited in some way from the services the LBDA provides and so I know: I’m preaching to the choir.

But it can be even better. It can do even more. With this in mind, the LBDA has entered this contest for a makeover that would make it even more efficient in meeting those goals of caregiver support, research and LBD awareness.

You can help by VOTING ONCE PER DAY PER COMPUTER, Jan. 9-31! The more votes, the better chance we have to win, and so please spread the word. Jim and I will be voting. We hope you and yours do too. Thanks for your support. Vote at the link below:

Friday, January 4, 2013

Just Telling Isn't Enough

“Don’t rush into a room with little more than a greeting and start working with a dementia patient,” the CNA (Certified Nursing Assistant) trainer told Janie’s class. “They function at a slow pace. Too much speed and not enough information confuses them, which slows down their thought processes even more. This adds stress, which increases symptoms like delusions. So walk in the room and, with a pleasantly calm voice, let your patient know what you want to do. Ask their permission. Include them in the task. Otherwise, someone who is already delusional may feel attacked and that’s when you are likely to get hit.”

Janie remembered what her instructor said. She was late—as usual, but she walked into Ed’s room instead of rushing in the way she wanted to. She took the time to ask him if he would like to have a shower instead of just telling him it was time for a shower while getting him ready. “OK,” Ed responded with a smile. Janie smiled back, glad that her instructor’s advice was working. Ed was being more agreeable than he usually was.
Information given and permission received, Janie bent over to take Ed’s shirt off—and he slugged her in the jaw. To Janie, “have a shower” meant a whole string of events, from removing Ed’s clothing to toweling him dry. To Ed, whose LBD type of dementia made sequential thinking difficult if not impossible, “shower” had nothing to do with taking his clothes off. He perceived Janie’s bending down into his personal space as an attack.

For the overworked and rushed CNA, or for that matter, the stressed out family caregiver, taking time to explain every little thing can seem like a burden. But in the long run, it saves time, because their patients will be much more cooperative—and less combative. But as Janie learned, it’s not enough to simply explain the concept—the big picture. They need to explain each step as they go along. Let’s replay the above scene:

“Hi Ed, would you like to have a shower?” Janie says as she enters the room. With a smile on her face she waits for Ed to think a minute before he nods and says, “OK.”

After Ed answers (giving him time to process), Janie continues, “Well then, we need to get your shirt off.” (Telling him the first step of what she wants to do.) Janie waits until she is sure Ed understands what she said. (Letting him know about the shirt is a 'step.') Then she continues, “Which arm do you want to take out first?” (Including him in the task.)

Now that Ed knows why Janie is reaching for his shirt, he cooperates, holding out his left arm. As they go along, Janie tells Ed each step before she does it and includes him when she can. She never moves to the next step until she can see that Ed is with her—that his processing is “up-to-date.” Ed is less confused because he isn’t being rushed. He has a better idea of what Janie wants this time, and so instead of fighting her, he helps. Ed gets his shower and enjoys the experience. Janie is done in record time and moves on to her next patient with a feeling of success.

The first scenario is most likely to happen in a care facility where staff members are less familiar to their patients than family caregivers are and therefore can more likely be seen as attackers. However, if you are a family caregiver, you need to use these skills too. It may also fall upon you to be the “instructor” who explains these skills and the reasons for them to the well-intentioned, but not always Lewy-savvy Janies in your loved one’s care facility.