August is a celebration month for us in many ways. Both our birthdays are in August. So is our anniversary. Besides these, we are usually traveling in our RV and meeting up with friends and family that we don’t get to see the rest of the year. All of these things are fun for us. We still enjoy the excitement of celebrating holidays, the variety of being on the road and the crowds that we often encounter. We don’t enjoy so much the challenges that RVing often brings…the flat tire, the refrigerator or furnace that quits working, etc. But we can cope and get on with our lives.
However, we know that if one of us had dementia, that wouldn’t be the case. Too much excitement would bring on difficult behaviors. So would too many people. And the number of people who make up a “crowd” shrinks from many to as few as three or four. There’s also the possible frustration and pain of finding that you or your loved one no longer recognizes a dear relative that you haven’t seen for a while. As for variety and the challenges, anything that deviates from the norm is too much challenge, and no longer fun or even practical. Once enjoyable travel becomes an unwelcome effort and it is better to stay home and invite friends and relatives to come visit you, a few at a time. Dementia doesn’t stop a couple from enjoying life, but it definitely requires you to make changes in the way you go about it.
Our birthdays remind us that we are both at risk for dementia. Age is a major factor, and we are both well past 70. We do have other age-related issues, and some of these are also risk factors for dementia. However, although we are super aware of the possibility, our occasional lapses in memory don’t yet add up to dementia. (Click here for a great Teepa SnowYoutube video about the difference between this and true dementia.)
Our anniversary reminds us that in general, couples are happier and healthier than their single counterparts. We also do better if we do come down with an illness, including dementia, due to our built-in support person, advocate and caregiver. Sometimes, such as when Jim and I have a disagreement, I think back to simpler times when I had only myself to please. I’m sure Jim does the same. But really, they weren’t that simple. I also had no one else handy to share my joys and disappointments with. It just isn’t the same when you have to go outside your home to do this, no matter how supportive your relatives and friends are. We both celebrate our anniversary with gratitude.
Our meetings with family and friends remind us how important it is to maintain a social life. Being on the road as much as we are in the summer, that can be difficult. But again, we know that staying in contact with other people is a key component to staying healthy. Even if one of us did have dementia, that would be true. It is so easy to become isolated when you don’t feel good, or when your dementia begins to make you feel uncomfortable with others or when you, as the caregiver, begin to feel overwhelmed, or find that your interests have changed. This can be especially true if you allow this ever so common illness cause you embarrassment or shame. Being proactive and talking about the issues around dementia works a lot better than trying to hide it—for both the person living with dementia and their care partner.
Traveling in our RV also makes us very aware of the age-related issues around driving. We know that the time will come when we will have to stop taking our truck-sized vehicle out on the road—that it will eventually be time to find other ways to travel, or to stay home. So far, we do well, and we haven’t had any scares. Jim likes to drive and does it well. Even so, we know this can’t last forever. We hope that when the time comes, we can let go gracefully without the wake-up call of an accident or near-accident that many have before they can accept that it is time for a change.
But in the meantime, viva la travel!
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.
Friday, August 31, 2018
Friday, August 24, 2018
Making Conscious Choices
We’ve been teaching about dementia for many years. Over time, I’ve come to notice that “normal” people find it almost as difficult to change their minds as does a person with dementia. The difference, of course, is that we have a choice and those with dementia don’t. But how often do we exercise that choice.
For example, we talk a lot about how a person with dementia CAN’T change their mind, once it’s made up because their ability to think abstractly is limited. We can, but how often do we make that effort? Think about the last time you disagreed with someone. Did you consciously use your abstract thinking ability to evaluate their view and consider how it might be right, or even partly right? Or did you respond almost automatically, with your own pre-determined view? If you chose the latter, you aren’t alone. Most people do. They make a decision and stick with it even when new information makes it less accurate. Humans tend to do things the easiest way. Conscious thinking takes effort and the willingness to accept that we might be wrong. The stronger our beliefs, the harder it is to change them.
I often think of a “fact” I learned in college in Alaska. In my Alaskan history class, I learned how people emigrated from Asia to Alaska over the Bering Sea land bridge during the ice age, and then filtered south. Recent discoveries have made that theory very questionable. Even so, it is still the theory that most resonates with me. Now this doesn’t affect my life. However, it does make me think about other beliefs I might have that are more personal. What about the religious and political beliefs that I have developed over time? How often do I question them to see if they are still relevant? How often do you?
Care partners of people living with dementia are challenged to make these determinations all the time. You learn to put aside your own beliefs about what is true and what isn’t and go with your loved one’s views at least enough to let them feel heard and affirmed. But how often do you do this with others?
This time I think of a cousin that I grew up with. We have very different religious beliefs but we can still talk about them. Neither expects the other to “convert” but we are able to consciously use our abstract thinking ability to share and look for value in each other’s ideas. This isn't something we do casually. It takes time, patience, empathy and acceptance as well as a healthy curiosity but the result is a special closeness that we otherwise wouldn't get to feel.
You may think that this blog isn’t about dementia care. It isn’t. It’s about self-care. It’s about choosing to exercise your ability to think abstractly, to listen and consider before rejecting a new or conflicting idea. Remember the old adage: “Use it or lose it.” The less you make conscious use of this ability to make conscious choices, the more rigid in your thinking you will become, making it almost as difficult for you to deal with change in any form as it is for your loved one.
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.
For example, we talk a lot about how a person with dementia CAN’T change their mind, once it’s made up because their ability to think abstractly is limited. We can, but how often do we make that effort? Think about the last time you disagreed with someone. Did you consciously use your abstract thinking ability to evaluate their view and consider how it might be right, or even partly right? Or did you respond almost automatically, with your own pre-determined view? If you chose the latter, you aren’t alone. Most people do. They make a decision and stick with it even when new information makes it less accurate. Humans tend to do things the easiest way. Conscious thinking takes effort and the willingness to accept that we might be wrong. The stronger our beliefs, the harder it is to change them.
I often think of a “fact” I learned in college in Alaska. In my Alaskan history class, I learned how people emigrated from Asia to Alaska over the Bering Sea land bridge during the ice age, and then filtered south. Recent discoveries have made that theory very questionable. Even so, it is still the theory that most resonates with me. Now this doesn’t affect my life. However, it does make me think about other beliefs I might have that are more personal. What about the religious and political beliefs that I have developed over time? How often do I question them to see if they are still relevant? How often do you?
Care partners of people living with dementia are challenged to make these determinations all the time. You learn to put aside your own beliefs about what is true and what isn’t and go with your loved one’s views at least enough to let them feel heard and affirmed. But how often do you do this with others?
This time I think of a cousin that I grew up with. We have very different religious beliefs but we can still talk about them. Neither expects the other to “convert” but we are able to consciously use our abstract thinking ability to share and look for value in each other’s ideas. This isn't something we do casually. It takes time, patience, empathy and acceptance as well as a healthy curiosity but the result is a special closeness that we otherwise wouldn't get to feel.
You may think that this blog isn’t about dementia care. It isn’t. It’s about self-care. It’s about choosing to exercise your ability to think abstractly, to listen and consider before rejecting a new or conflicting idea. Remember the old adage: “Use it or lose it.” The less you make conscious use of this ability to make conscious choices, the more rigid in your thinking you will become, making it almost as difficult for you to deal with change in any form as it is for your loved one.
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.
Friday, August 10, 2018
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.
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.
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