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.

Easter Sunday

Last Sunday was Easter. It was a different experience for us. We went to church online. We heard familiar voices saying needed words of encouragement and sang along with familiar songs to lift our spirits. We missed the greeting and meeting that goes with church in our minds, but we appreciated the chance to commune with the more than one hundred people who participated online with us. We hope you had similar experiences on this special day.

That service reminds us of how we all must learn new skills and new ways of connecting. We, as humans, need to connect with others and that is more difficult right now. But we can make phone calls and send emails. We can learn to use Zoom for gathering in a group. I'm sure there are other ways too that this once computer savvy but now way behind the times senior doesn't know. Give them all a try and use what works!

LBD care partners have an extra challenge in that their loved one may not understand what is happening. LBD tends to make groups confusing and so your loved one may actually appreciate social distancing and quarantine. Take this as a gift; one less thing to be concerned about!

Another gift for me is the appreciation I have for those I do connect with. I don't take this so casually anymore. Feeling grateful is very healthy and I've had a chance to feel grateful a lot lately. Sad, too, I admit, and concerned for our country as a whole and for individuals who are dealing with much more difficult situations than we are.

By the way, we welcome you to comment. If you add your phone number I will call you, so that you can ask questions, share experiences or just connect with another human. Since I review all comments first before posting them, your number will stay private and your comment will only be posted if you want it to be. Also,  we do not post any message that includes another website link.

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.

Hallucinations, Pt 2: Management

This is the second in a series of three blogs about hallucinations based on Tanis Ferman's presentation at the 2019 ILBD Conference.

First, let me repeat that hallucinations only need management if they are distressing to your loved one. If they are distressing to you, this means that you need to find a way to accept your loved one's behaviors. Otherwise, he/she will pick up on your negative emotions and mirror them, with a likely increase in hallucinations or worse, in their intensity.

However, if a hallucination is stressful, there are some ways to help your loved one de-stress. This week, we are focusing on what Tanis calls "solution-focused management," which involves identifying patterns and triggers.

Once you know about the trigger, it is often easy to solve the problem. Even more important, it is often possible to prevent the behavior by removing or avoiding the trigger. For example, Iris, tells about her husband Eric, a Vietnam veteran, who becomes violent when he "sees" war battles and delusionally believes that he's involved.

How is this is a problem?

• It's a problem for Iris because she's afraid she'll be hit.
• It's a problem for Eric because he thinks he's being attacked by the enemy.

When does it happen?

• It is most often the result of a dream that wakes Eric up acting out what he had been dreaming.

Where does it happen?

• In bed.

What happens before and after?

• They often happen after a physically exciting scene on TV. It doesn't have to be about war. The last time, it was a football game.
• After Eric wakes up fighting, Iris leaves the bed.

Who is around?

• Usually only Iris. But it was triggered once, when an old buddy showed up and they got to reminiscing.

These answers tells Iris that she needs to monitor Eric's TV watching and ask his buddies to be careful what they talk about because both of these appear to be triggers. She also probably needs to find a different bed to sleep in. Emotion-based solutions may not be helpful with this type of issue because, with almost immediate violence involved, Iris will be less able to get past the negative emotions to where Eric can hear her. Her best solution is to limit the possible triggers and make sure she is safe.

Likely Triggers

• Physical: Medications, dehydration, infection, not enough  exercise, pain, constipation, sleepiness, alcohol, mood.
• Environment: Clutter, lighting, cues (TV), move misperceived objects
• Task demands: Task too hard, causing stress, or too easy, causing boredom.
• Fluctuations: Not actually triggers, but if you are aware of your loved one's pattern of fluctuations, you can usually choose activity times for when he/she is more aware which will decrease stress and increase awareness.

Next week's blog will be about dealing with hallucinations via what Tanis calls emotion and communication focused management.

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.

Hallucinations Pt. 3: Emotion and Communication

This last blog in this series about hallucinations combines what Tanis Ferman talked about in her 2019 IDLB Conference presentation with some of the information from our own book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs.

Managing difficult hallucinations is much like managing any other difficult behavior.

Emotion-focused management:

• Be aware of your loved one's feelings. "You seem ___________ (frustrated, aggravated, scared....)" These negative feelings are very strong. In fact, since your loved one probably has only one intensity, they are likely to be catastrophic. Therefore, they must be addressed before your loved one can pay attention to anything else.
• When you truly listen and make an effort to identify the feelings involved, your loved one will feel heard, taken seriously and validated. With their negative feeling addressed, they can start to relax.
• In addition, if you understand the feelings involved, this may help you address the situation itself. Remember anger is a secondary feeling. You are looking for the underlying feeling that is driving the anger or fear. Often this comes from residual feelings like a fear of abandonment or feelings of loss.

Communication-focused Management:

DO's

• Do listen for feelings. These are going to tell you a lot more than the words do.
• Do ask about it. Show some interest. Let your loved one know you are listening. (Remember to ask easy to answer questions, with no more than two well-identified choices and no open-ended questions.
• Do make empathy statements (that's frustrating, I understand)
• Do apologize. Yes! Apologize. If your loved one is accusing you of something, think about how you'd feel if the shoe were on the other foot and YOU believed someone had done to you what your loved one believes you've done. Then apologize the way you'd want to be apologized to.
• Do respond positively (Great idea! Good job!) Your positivity will be mirrored by your loved one...but only if you've dealt with the negatives first.
• Do monitor your non-verbals. Your loved one will believe your body language before your words. (Actually we all do!)
• Do go along to get along. Go with the flow, think of it as a play in which you have a part. You have to follow your loved one's lead but you can move the action into a more comfortable direction as long as you are both on the same wavelength--in the same reality.
• Do enlist the help of others. Ask for help, go to a support group. Share your concerns. There will be someone there who's had the same issues and may have found a way to deal with them that you haven't tried.

DON'TS

• Don't argue. This triggers those demanding negative emotions and just makes things worse.
• Don't quiz. Ask interested questions but don't badger. This makes your loved one feel defensive...and the negatives show up again.
• Don't correct. This makes your loved one feel insulted. In his reality, he is not wrong and that's the only reality that counts.
• Don't give too many details. This will make your loved one feel confused and inadequate.
• Don't defend. This will make your loved one feel lied to. In his reality, you did what he says you did, thus your attempts at defense are insulting lies.

If none of this works, talk to the doctor about drug management with something like Sequel. Remember that people living with LBD are more sensitive to most drugs than the average senior, thus starting with very low doses is important. But if the low does doesn't work, ask the doctor to increase it until it does--or it causes unwanted side effects.

Finally, always remember that your stress will be picked up by your loved one and reflected back as behaviors...hallucinations, angry accusations, and so on. And so take care of yourself. Get enough rest and some "me time." The better you take care of yourself, the better your loved one will act!

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.