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

Friday, August 31, 2018

Dementia Risks made Personal

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.

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