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

Thursday, April 23, 2015

Updates and the Value of Routines

This is a blog about a lot of things that have been happening in our lives lately.

First, here's the promised progress report on Jim and his surgery. The surgery went fine. He is home and doing well. He sends out thanks for all the inquiries.

Then we need to recognize a couple of families that have made impressions on our lives. The first is a couple we met last summer in Washington State. Dave and Bet, and their way of handling her LBD, were the subjects of all three of our August, 2014, blogs. We just received word that after 5 1/2 years, Bet has ended her LBD journey. We send her family many warm wishes.

Joy Baker is the co-facilitator of our local LBD Caregiver Support Group. With her caring ways and ready wit (a requirement for caregivers, she insists), she has become a good friend, not only to us, but to many in that group. Her dear husband, Bob, also ended his LBD journey recently. We also send many warm wishes to Joy and her family.

Finally, another family has also been in thoughts. John and Laura have been together for 40 years. Theirs has been a close marriage on the most part and they never really needed anyone but each other, especially after the children were grown. Yes, they were social, but usually they socialized with other couples. They had hobbies, even different hobbies, but still, they did them together. But now, John has LBD and Laura is his caregiver. He's still physically active--he can walk for miles and sometimes does, when he escapes from their gated community. Recently the police brought him back from such an adventure. Laura has begun to feel trapped. She can't leave him alone anymore and he won't stay with anyone else. They've just never had that kind of relationship. What to do? That's her dilemma right now.

It makes us realize how important preparation is. Developing routines while the capability of thinking is still present is an important step that many caregivers miss. Such a routine would probably have helped John accept Laura's leaving him with someone else for a few hours. For instance, they could have instituted a weekly "guy's day" where some of John's s male friends would come to play cards or visit, while Laura left for a couple of hours. As most couples would have done, they didn't even consider this while John was still able to see cause and effect. He was fine alone; he didn't need a "babysitter" while Laura ran errands. After all, who wants to pay or ask friends/relatives for unnecessary help. But then, when the need came--and it usually does for our loved ones, it was too late to develop a routine that John could accept.

The moral of this story is this: If you are just starting out on this journey, do remember to plan for the future while you are dealing with the present. This includes more than getting the right legal work done, as important as that is. It also includes setting up some routines that will pay for themselves time and time again even if they seem unnecessary at the time you start them.

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

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