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

Friday, June 26, 2015

Hydration, Part 1: Why It Is So Important

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

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

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

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

Don’t expect your loved one to report thirst.

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

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

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

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

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

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

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

Friday, June 19, 2015

What Not to Say to a Caregiver

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, June 12, 2015

The LBD Caregiver's WALK

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

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

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

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

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

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

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

WALK works for LBD caregivers too:

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

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

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

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

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

For information about Lewy body disorders, read our books:

Friday, June 5, 2015

Hospitals: What Nurses Wish We Knew

We've done several blogs about visiting the ER and the hospital with our loved ones. We've talked about what we want the staff to know and do and how to best make that happen. But what about the other side? What do nurses wish family caregivers knew? Well, the people at Aging Care did a good job of compiling a list. You can read the whole article by clicking here, but this week's blog is an abbreviated list with a few of my own comments:

1. Aging adults are not children. This is especially true for those with dementia, which can cause them to act out in childish ways. But your loved one has had a full life and deserves respect. Be patient, make sure they are safe—but allow them as much independence as possible.

2. Look out for depression, which is especially common among the elderly. Do not to view this mental ailment as a "normal" side effect of aging, but as a disorder that can and should be treated. Depression can be a LBD symptom, but the treatment is the same. Click here for a list of depression symptoms to be alert for.

3. Recognize what your loved one has lost. The list probably includes family, friends or a beloved home the most profound is the loss of independence. This loss can be so upsetting, that it may cause your loved one to lash out and refuse your help. It is important for caregivers to resist viewing these as personal attacks.

4. It's important to keep moving. Your loved one may be resistant to physical activity due to stiff joints, sore muscles, or other mobility issues, but it's vital that they get their blood pumping in some way on a consistent basis. Regular physical activity is one of the easiest and most effective ways to stave off a host of undesirable ailments, including: osteoporosis, arthritis, diabetes and heart disease. Research has also linked exercise with better brain health and a reduction in risk for developing depression.

5. Assume that your loved one can hear/understand you. With LBD, comprehension lasts much longer than the ability to speak clearly and hearing is one of the last things to go. We never know what our loved ones do and do not understand, so it's better to just assume that they hear and understand.

6. Everyone needs a break—even you. Caregivers hear it all the time, but it bears repeating: You'll be a better caregiver if you take a break. It's important for even close family caregivers take time to "disconnect" from their loved one. Caregiving needs to be a team effort in order to avoid burnout, but finding respite resources can be a challenge. Click here for some tips on how to find respite care.

These suggestions are for caregivers of the elderly in general but they are all very apt for anyone caring for a loved one with Lewy body dementia. These are all issues we've discussed in the past, but it doesn't hurt to bring them up again...and again. Thank you, nurses, and the Aging Care website.

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.