Summer Tribulations

We are starting out summer schedule this month. While we are in a stay at home mode like most of the rest of you, we aren’t out, finding new material or meeting people with stories to share. This means that my “creative juices” don’t get triggered as much. We are also updating our computers and so I’ll be spending my time learning new programs and systems.

Today, I’m writing about the times we are in, where many things have combined to make a care partner’s already difficult job even more difficult.

• Many of you who are already fighting your own battles with LBD. Who needs more? But there is more and it keeps coming!
• Covid19 had caused issues for each of us: lack of supplies, poor access to medical help and loss of contact with family and friends. It has hit our economy so that many of you may be finding it difficult to pay bills. Perhaps the most difficult is the poor if any access to our loved ones in care facilities.
• Then we have a year where summer isn’t even here yet but temperatures are already heating up, bringing fires that cause evacuations and sometimes, permanent loss of homes. In other places, hurricanes and other weather-related are causing the same kind of problems.This would be bad enough in normal times but trying to stay safe in the Covid era when you are homeless becomes impossible. Trying to care for a loved one with LBD is made even more difficult when you can’t place them in a care facility until you can find a new home.
• Now add the unrest with the protesters. We support their concerns and have been thrilled that many have chosen to protest peacefully and that in many cases, the police are supporting rather than fighting the protesters. We are appalled at the rioters and looters that give the protesters a bad name and damage their cause. But the unrest makes it more difficult for those of you caring for loved ones to get out of your home to do shopping or do other necessary errands. Just one more tribulation to add to an already long list.

So those are the negatives. What are the positives? Sometimes, they are hard to find but I believe that such adversity helps us to better appreciate what we do have. For each of us, that list is going to be different. Do you have a safe, comfortable home to stay in? Do you have stores that deliver or stay open at extra hours? (We go shopping now at 6am!) Do you have air conditioning? Do you have family or friends who show up anyway and help out? Do you have enough to eat, a place to sleep? Do you have a computer and are you learning how to do Zoom meetings? How to learn via pod casts? How to use YouTube? Take some time today and find at least three things you are grateful for. Then think about these…and possibly more!...just before you go to sleep tonight.

Finally, as a part of our summer schedule, I invite anyone who is interested to submit a 300-800 article as a guest blogger. Here are the requirements:

• The content must be about dementia or dementia caregiving.
• Articles about LBD and LBD caregiving are preferable.
• Articles must not be sales vehicles for anything. I always delete any comments that are testimonials for herbal or drug cures. This goes for guest articles as well.
• You can discuss generally something that people might buy, for example, the “Intelligent” speakers that Amazon, Google and others sell. If you mention anything by name, you need to mention at least three, share what you like about each and provide references for all of them.
• I will proof the article and will usually make some changes to fit our format. I will always send it back to you for approval before I post it on the blog.
• I will always add a paragraph as introduction and often, I will add comments within the article that are clearly from me.

I hope I some of you will send me some articles!
Two weeks from today, we start another series of YouTubes by Pat Snyder. She has been doing many of these and had developed a good following. We are honored to have her as our guest YouTube blogger!

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Showtime and LBD

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, is short, less than 5 minutes. But it speaks to a very important issue. Showtime, where a person living with LBD appears more normal for a period of time, is a symptom that can make diagnosis and treatment difficult. It can cause family members to doubt your stories about difficult behavior. Pat makes some very good suggestions for dealing with this symptom.

I'd like to add that your loved one has no control over when Showtime comes and goes. It just happens. We as humans all have urges to please people we respect, such as doctors and visiting family members.  You and I can choose to act on those urges or not. Our loved ones can't. They have the urge and they act. Even though the behavior is subconscious, appearing "normal" is hard, exhausting work. Once it ends, your loved one will probably sleep for hours.

Pat recommends in her video that you go back and view her previous video on the Five Moving Parts (date) for more information about how Showtime comes about. I'd also recommend our books, especially Responsive Dementia Care, which focuses on behavioral issues. Both are great for sharing with others as well.

To watch this week's video, click on the title: Lewy Body Dementia and "Showtime"

Next week, Pat will speak about choosing a doctor and getting a diagnosis.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Personify the Disease

This week's 15 minute video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about making the disease the third person in the room. "It's Lewy, not my loved one." Or to a loved one: "Lewy is messing with your ability to talk." Blaming the disease makes it easier to deal with difficult behavior. It also decreases your loved one's frustration.

But she also talks a lot about some other very important things, including improv acting , being legally prepared and the value of sleep. I hope that eventually she'll do a video about each of these subjects because they are also very important.

Click on the title to watch the video:  Personifying the Disease.

Next week, Pat talks about Showtime, a common LBD symptom that often goes unrecognized even by the medical community.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

LBD's Five Ps

This week, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about LBD's Five Ps. Pat's primary mission is to make your dementia journey more gentle for everyone. In this one, Pat teaches us five ways to act to maintain a safer, more gentle environment. (Remember YOU can make choices. Your loved one can't--they must simply react to the first urge they get.)

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Enjoy this 8.5 minute video by clicking on the title: A More Gentle Dementia Caregiver Journey: The 5 P's.

Pat has already expanded on one of these parts: Personify the disease. That will be next week's video. I hope that eventually, she'll do a video on each of them.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

LBD's Five Moving Parts

This week's video is from Pat Snyder again. It is actually her first video about living with her husband John, who died with Lewy body dementia in 2015. She's been teaching and writing about LBD since well before that and her videos are well worth listening to. In this one, Pat describes five major symptoms of LBD in alphabetical order--to make them easier for you to remember. A couple of comments:

• I find it interesting that she connect behavior and mood. There is definitely a connection and but I've usually listed them separately.
• I teach that LBD is more of a thinking disorder than a memory disorder. Pat also discusses how LBD's cognitive issues are different from the memory loss common with Alzheimer's.

I could go on making comments but I think the best thing is for you to just listen to Pat's video. Jim and I may teach about LBD a little differently, but we definitely agree with everything she says. I especially like her final statement. "Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment." What a positive ending!

Click on the title to see the video: Five Moving Parts.

Next week, Pat again goes alphabetical and talks about the Five Ps.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

The Nightmare of Poop

For the next few weeks, I've invited Pat Snyder, author of Treasures in the Darkness, to talk to us via Youtube. Her first video is about a subject that most dementia care partners have to deal with eventually and one that can be very stressful. In fact it was several stressful entries in an online support group that prompted Pat to make this video. Right now is a fairly stressful time already and we don't need more stress. I hope that her suggestions help you to limit the stress in your life--and your loved one's!

And so set aside 20 minutes to sit back and relax while you watch Pat's video on The Nightmare of Poop.

Next week, Pat will be back with another video.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.

Dealing with the Isolation

We know a lot of you are dealing with how to care for a loved one at home with little outside connections.

• Do keep up with your friends and support people by phone. Consider a phone tree, where each of you is responsible for calling someone in your group and reminding that person to call whoever they are responsible to call.
• Do use viewing programs like Skype, FaceTime or Zoom to connect with friends and groups.
• Do learn to order online and have your supplies delivered. Deliveries are often free right now.
• Do stay safe, and abide by all the safety measures they are asking us to use--hand washing, etc.

We know others of you are dealing with having a loved one in a care facility that you aren't able to visit.

• Some care partners say they have found that they can work with staff to have their loved ones at a window so they can wave and at least see you for a while.
• Some care partners are choosing to move into the facility and sleep on a lounge chair next to their loved one's bed. Care facilities may allow this, especially if it makes less work for them. But you will have to abide by their rules and you won't be able to go in and out as you normally would.
• Make daily telephone calls if your loved one can still use a phone. 
• Staff may be able to help you set up Zoom or FaceTime meetings but they are awfully busy right now.
• Give staff extra kudos...bake them cookies, send them cards, let them know how much you appreciate them. A staff that feels appreciated will treat your loved one better--it's just human nature!

These suggestions aren't anywhere near the whole answer and they may not even help you at all. If you have found something that does, be sure to write a comment here and I will publish it. Be aware that I don't publish anything commercial or anything with a website link in the comment.

In the meantime, stay safe.

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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

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.