When Things Get Tough

Do you ever have times when it all goes wrong? We recently experienced that. We are in our motorhome for the summer. I often do my best writing right after I get up, sitting there in my office space before it must become our dinette for breakfast.

One morning, I needed to do some internet research, but my browser wouldn’t open. I tried a different browser. It wouldn’t work either. Jim and I have always considered ourselves pretty computer-savvy, but nothing either of us could do made a difference. (It was a virus—several actually, we found out later.)

Oh, well, it was time to eat anyway. Maybe some time away would make a difference. (The difference is usually in my ability to think through a solution, not in the problem itself.) I set my computer aside and turned my workplace into a dinette by setting the table. It was Jim's day to make omelets and so I looked forward to a delicious breakfast. But when he turned on the gas burner, it wouldn't light—we’d neglected to fill the propane tank during our last move and now it was empty.

Well, that wasn’t all bad—we had an excuse to go out for breakfast. Then, when time away didn't improve our ability to fix my computer, we finally admitted we needed help and took my balky computer in for repairs. That wasn’t all bad either. I ended up getting a whole year of service for the cost of that one visit. Now I will be able to use their superior knowledge to keep my computer in much better shape with occasional preventive visits.

Caregiving can sometimes be like that. Sometimes, you can use a negative to gain a break, or a treat as we did. Sometimes, when you finally go for help, you find there’s more there for you than you thought. Of course, our problems are mild compared to many caregiver dilemmas. How do you find a positive in cleaning up one more mess or one more wet or worse bed, lifting a heavy, unable to help body when your muscles already scream or explaining for enth time why your loved one must, or can’t, do something?

A lot of it has to do with one’s frame of mind:

Live one day at a time. Do what you have to today and keep in the back of your mind that tomorrow’s bound to be better, with the load lighter and the day a little brighter.

Appreciate feeling needed. Giving has a way of giving back. Without you, your loved one’s life would not be nearly as good. Savor that knowledge that what you are doing is useful and helpful. You are making a difference.

Avoid being perfect. Divide your work into the “must do’s and the “should do’s.” Let the “should do’s” go until you feel better able to cope. The world won’t stop if you leave the dishes undone.

But there are also some small things you can do:

Take some deep breaths. Deep breathing does two things: it gives us a little time away from our problems and b) it adds oxygen, which helps rebuild stress-depleted resources. You will think more clearly and feel better able to deal with the situation after only a few breaths. However, be careful not to hyperventilate—breath out as much as you breath in.

Go on a mini-vacation--give yourself a change to regroup. I went out for breakfast. You may not be able to do that, but you can take a  five minute break. Go into the bathroom and lock the door if you have to. While you practice some deep breathing, close your eyes and imagine yourself someplace pleasant, a warm beach perhaps, or maybe just resting under a tree. You really will feel more positive and more able to face your world when you return from your virtual vacation.

Laugh--see the silly side of life. When nothing else works, laugh. It is amazing how just laughing at a serious problem makes it seem less burdensome.

And finally, the big one: Ask for help. You really don’t have to do this all alone! Like us with my computer, many caregivers feel they should be able to do it all without help, especially unscheduled help. But, the worst that can happen when you ask is that the person will tell you “no.” See previous blogs or read our books for ideas about when, who and where to ask for help.

The bonus is that as I did, you may find that when you ask for help, the help keeps on coming in some form. Perhaps your helper will volunteer to come over one day a week. Perhaps, you finally gave in and took your loved one to the doctor for a bothersome but not, you thought, urgent issue and a change of medication also helped with something else.

This isn’t about long term problems—just those days, or even several days at a time, when everything seems to tank. When the challenges last day after day, and you seldom get a chance to come up for air, the suggestions here are only stop-gaps. If that’s what is happening, caregiving has stopped being a one-person job and you really need more help on a regular basis. That may be someone to come in several times a week or it may be moving your loved one into a residential facility—or somewhere in between. See previous blogs and our books about this too.

Learn more about asking for help from
A Caregiver's Guide to Lewy Body Dementia
Managing the Cognitive Issues in Parkinson's and Other Lewy Body Disorders
LBDtools.com

Keeping a Healthy Brain

Living a healthy lifestyle is important for both caregiver and loved one. Many of the same things that keep you physically healthy also keep your brain healthy.

Get active. Physical activity reduces the risk of dementia. If dementia should appear, physical activity keeps the mind working better longer. Even with severe dementia, exercise is important—“better than any dementia drug,” experts say. Aim for 30 minutes of moderate activity five or more days per week.

Exercise your brain. The brain is a muscle and it needs to be exercised and challenged too. Mental activities like puzzles and games, taking new classes, and traveling to new places all appear to slow down memory loss. As dementia increases, the challenges change from doing new things to maintaining old skills. However, the need for challenge continues.

Eat healthy. Include fatty acids, colorful fruits and vegetables, and the right supplements in your diet. Many studies have found that a Mediterranean-style diet based on whole grains, fruits, vegetables, legumes, nuts, olive oil, and fish is good for protecting against dementia. It may also decrease symptoms once dementia is present. For more about nutrition, read this blogs LBD and Nutrition five part series, starting 95/13, or either of the Whitworth books.

Maintain your friendships. Staying socially active appears to be as important as mental activity. We are social animals and we tend not to do as when we are isolated. Find ways to get out and visit with others regularly. Find someone to sit with your loved one at least once a week so you can get out with others. This serves a double purpose. Your loved one needs to socialize with someone besides you too. When you can’t get out, use the telephone and internet to make contact with others.

De-stress. Tension, anxiety, and worry become toxins to the brain dealing with even early dementia. They slow it down and increase other LBD symptoms. Do everything you can to make your family’s life calm and stress-free.

Go Alternative. Use alternative therapies instead of drugs whenever possible, especially for stress management and acting out. These are safer and often much more effective. An added benefit is that they usually include personal attention. For example, a relaxing massage can not only de-stress but also be a form of communication as can applying a soothing topical oil to decrease joint pain. Singing can include the whole family. And pets can be something to talk about as was as an ever-present sources of comfort.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on LBDtools.com.

Getting Out of the House

The blog is going up early this week--to make up for the times when it was late! We are visiting family and getting ready to leave on a long weekend of camping. 

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Last week you met Dave and Bet and we talked about the learning that’s required of the new LBD caregiver. An active couple, they hadn’t let Bet’s PD stop them. A few months ago they were riding their tandem bike in marathons. Now, she falls asleep on the bike—not very safe on a two-wheeler! Dave solved that problem with a new vehicle called a Quadribent—a four-wheeled contraption something like a land-locked paddle boat. Now Bet sits beside Dave instead of behind him and is fastened in with a seatbelt. “It’s not all good,” Dave tells us. “With the tandem bike, when I pumped, her pedals went round with mine and she had to move her legs. Now each side is separate and nothing keeps her from stopping. But at least, we can get still out and bike, which we’ve always enjoyed.

Dave knows he and Bet are on an adventure where the rules continue to change. He is fortunate that he can be open to new ideas when old ways don’t work anymore. That’s what is needed if you are going to survive as a LBD caregiver.

With Bet’s awareness is now fading faster than her physical abilities, eating out has become a challenge too. “Appetizers!” Dave exclaimed as he told us about his latest discovery. “They work better than regular meals. Finger foods, you know. Vegetables, and dips and stuff like that. But not sandwiches. She can’t hold them together anymore. Cheeseburgers still work, if there’s lots of cheese for glue.”
Dave has learned to flow with what works. Appetizers are great. So are chicken nuggets or other things you can eat with your fingers. On the other hand, things that can fall apart like sandwiches are poor choices. If your loved one does want a sandwich, be sure to ask for a knife and fork too. You’ll need them!

“I’ve begun to worry about public bathrooms,” he said. “The other day, she went into one and didn’t come out for the longest time. Finally, a lady came up to me and asked if my wife had blond hair. When I nodded, she told me that there was a woman with blond hair standing in there, looking confused. Then that kind lady told me there wasn’t anyone else in the bathroom and so she’d stand outside and keep watch while in went in and rescued my wife.”

Dementia makes decisions very difficult. Faced with so many doors, it’s no surprise Bet was confused. Many malls and large stores have family bathrooms. Doing some research before you go out can make your excursions a lot more pleasant. Some places have a single stall or room and that works well too. You can lock the door and no one is going to walk in on you. Try to limit your trip to places with family or single-stall bathrooms. However, your loved one needs to use the bathroom where that’s not an option, you can—and should—go with them. You might explain and ask for help—perhaps, ask someone to stand at the door and keep the place empty until you are done. People will usually be very glad to help if you are willing to ask.

Doing your research is as important as being open to change. Knowing what to expect, or how others have handled challenges or what’s available can make your job much easier. Asking for help is also important and the next blog is about just that.

For more about adapting and doing research, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, both available on our website, LBDtools.com.

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Caregiving is NOT a One-Person Job

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Dave and Bet were our neighbors in an RV campground. Bet was recently diagnosed with LBD and Dave is working hard at adjusting to his increasing responsibilities. “I’m not there yet, but I’m working at it,” he said with a grin. But actually, he’s already doing better than many who've been at it much longer.

One of his first steps was to ask for help. Caregiving is not a single-person task. Like many men—and sadly, fewer women, Dave recognized that right away. When Bet was diagnosed with LBD, they were full-time RVers in Yuma, AZ. He called his daughter, Lynn, and asked her to come and help. She did and together they made it to the Pacific Northwest where Dave and Bet now live—still in an RV but with a permanent address. Lynn and her family live nearby and she helps with the caregiving to give her dad a break now and then.

Dave has learned to ask for help in other ways too—as with his experience with public restrooms in last week’s blog. Asking for help is often one of the most difficult things a caregiver can do—and one of the most important. However, once the need is known, most people are eager to help. During a discussion in an online support group, a couple of women mentioned that their church groups have rallied around, doing things like bringing casseroles, doing the laundry, sitting with loved ones so the caregiver can run errands and much more.

Of course, asking for help can boomerang. Lynn often calls Dave and offers to take her mom the next day. Dave has learned to “wait and see.” If Bet isn't up to going out, the experience wouldn't be pleasant for either Bet or her daughter. Lynn understands, but if it is someone who doesn't understand the changeable character of LBD, they can be discouraged and won’t offer again. In another situation, a woman in a support group shared that a neighbor has been willing to help in an emergency but asked not to be called one again. “She couldn't stand the sadness of it all,” the woman said. This can lead to feeling guilty for asking in the first place but don’t let that happen. Instead, feel sorry for the person who sees only the negatives.

People often don’t know that help is needed, or they don’t know how to help. Or, someone will offer to help and right then you can’t think of anything specific. Or you can think of things, but you don’t know if they fit what the person would want to do. Some people solve this by keeping a list of things that would help as they come up. Things like staying with your loved one while you run errands, coming in to do the vacuuming, bringing a casserole so you won’t have to cook, or even doing the dishes. Every caregiver will have a different list, of course.

For more about asking for help, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.

For our special blog reader's price for these books, Click here.

Learning Curves

We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.

A selfie with Jim, Dave and Helen

We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.

But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)

Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.

As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.

“What does she take the Serequel for?” we asked.

“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”

“Do they bother Bet?”

“No, they don’t seem to bother her much at all. It’s me they bother!”

“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”

Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!

For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.