Roadside Lessons

Clatter, clatter, clatter. Not what we want to hear as we drive or RV from one campsite to another. We stop get out to find our exhaust pipe on the ground, run over by one of our rear tires.  We were miles from any town. A service station and a huge flea market barn are the only buildings in sight. Jim drives the RV, with the pipe dragging underneath and the tire shredded, to the service station. At least, we aren’t parked right on the road.

My call for roadside aid adds to the stress as I try to navigate through a forest of automated choices and long waits only to find that the real person I finally reach is the wrong one. I’m sure that normally, I’d have had no trouble with their system, but now I feel as though they are intentionally trying to make a difficult situation worse. After going through their complicated process several times, I talk to three different people, telling my whole story and over each time, before I reach one who seems to know her business. She tells me if they can find a tow truck big enough to tow a 20,000 pound RV, we’ll likely have to have it stored since it is Saturday and the repair shops aren’t open. And that cost of the tow will be well over what our insurance pays because we are in nowhere land, repair-shop-wise.

We count up the likely expenses as we wait for her to find a tow-truck. They finally put us in contact with a tow company but it will be a while before they can come out. Stress is going up for both of us. How are we going to handle this? Where will we stay if the RV is stored? How will we stretch our budget to pay for the extra cost of the tow? The questions just keep on coming. We are on our own. There isn’t anyone to call for help, except for the insurance people, of course. And we are independent. We prefer not to ask for help anyway. When I worry, I get irritable. And when Jim gets upset, he quits talking. It’s a good thing. Likely, anything he’d say would have set me off. Not the way to support each other, and we both know it, but stress is ruling.

The wait seemed to be taking forever and so I decide to go visit the flea market. A sign offering RV storage prompts me to ask if they have room to store the RV for the weekend.

“Sure,” they say. That part is easy—a business exchange. The hard part is being willing to let go of doing it all—even when I know we can’t.

I take a deep breath and say, “What I really need is someone to crawl under the RV and see what needs to be done so we can move it here.” Then I explain about the exhaust pipe. Years ago, Jim would have done it but those days are over.

They don’t hesitate. “Glad to help,” they say. “And of course, you can stay in your RV in our yard as long as you need to. Oh, and here’s an electric outlet for you to plug into!” Once again, I am reminded how most people love to help. You just have to ask! Quickly I call the tow company and cancel the tow request. It was just in time. The truck was already on its way!

By Monday, with our new friends’ help and advice, we have figured out how to get the RV repaired without having it towed. None of this would have happened if I hadn’t been willing to let go of my stressed out, we have to do it all feeling and ask for help! We are still dealing with the results of the accident but it hasn’t been nearly as expensive as it could have been. And we met some wonderful people!

OK, we aren’t caregivers, but the moral of this story is that anyone can become so stressed that they don’t think clearly. That is, anyone can start exhibiting stress-related dementia symptoms, including people like us who teach about that very thing! But thankfully, I was able to reach out and ask for help. And you can too. Even when you are feeling overly stressed you can do this. Of course, it helps to know who to ask. It pays to plan ahead and have a list of possible helpers handy. You won’t always be lucky enough to have your incident right next to the very help you need.

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

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Is it Dementia? Part 1: Natural Aging

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Is It Really Dementia?

“I feel like I have dementia!” This is a caregiver’s lament we hear often. And not only caregivers. We are seniors, living around seniors, and it’s not unusual to hear someone in their 70’s or older complain about their failing memory. Rose told me, “I can’t remember her name, but I will. I’ll wake up in the morning and tell Jack.” Jack nodded. “Yeah, she wakes me up to tell me!”

What we seniors are really concerned about is MCI*, not dementia. We know we don’t have “dementia.” We know it isn’t that severe. But we do get concerned that maybe, just maybe, we are headed that way. That what we are experiencing has passed from normal aging into MCI, the stage between normal aging and dementia. MCI can be defined as a decline in cognitive function greater than expected by normal aging but not great enough to significantly impact daily functioning.” It can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes.

So when does it stop being “normal aging” and become MCI? Just like there’s no clear line between MCI and dementia, there really isn’t one between normal aging and MCI. It’s all on the same scale with normal aging at one end, MCI in the middle and dementia at the other end. But let’s give it a try: With normal aging:

• Rose’s inability to remember a name, but remembering it later is a prime example. Forgetting about the person entirely would be sliding into MCI.
• Thinking is slower than it once was. It will likely take longer to make up your grocery list, or make plans or decisions. With MCI, thinking becomes even slower. You can still make decisions and plans if the choices are limited and you can take your time.
• You can still learn new things, given the time to do so. With MCI, it usually isn’t worth the effort, if you can do so at all.
• You’ve begun to appreciate how routines and things that stay the same make your life easier. With MCI, these things become so important that without them, you flounder and become anxious.
• Your visuospatial abilities tend to weaken. That is you have to use more care when you walk because you misjudge just where that stone is—or you reach for the table to steady yourself and miss it by an inch or so. MCI might be where you lift a glass of water to your mouth and it goes to your ear.
• You forget more easily.

The above Teepa Snow video talks about the difference between the forgetfulness of normal aging and that of dementia. She says that a person can remember about eight things at a time, but that as we age, that number decreases to about three. When it goes lower, then MCI is showing up.

With normal aging:

• You can go back in time. If you got sidetracked and forgot what you were doing, you can replay recent events and trigger the memory. If you lose something, you can think back to where you last had it and start looking for it there. A person with MCI has begun to live more in the here and now, and is losing the ability to go back in time. The thought or item is likely just gone.
• You may misplace or forget things, but a person with MCI can begin to forget whole events. This is the here and now issue again. The deeper into MCI and dementia a person gets, the less they may be able to remember events in the recent past.
• Your ability to reason doesn’t change. It may take you longer to figure things out, and to make decisions or plans, but you are as rational as you ever were. A person with MCI-LB* may begin to use delusional thinking to make things like a lost purse more understandable to them. They may think they saw someone “steal” a purse they can’t find.
• Your vocabulary doesn’t change. You may not be able to think of a word, but when you do—and you usually will eventually, you know as much as you ever did about what it means and how to use it in a sentence. With MCI, your vocabulary begins to become more basic.

Next week, the blog will be about the differences between dementia and delirium.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD

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

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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