When Nothing Seems to Work, Part 1

As educated care partners, we know a lot of techniques to use with our loved ones: be patient, be accepting, be empathetic, remember it's Lewy talking, go with the flow, keep my sense of humor, and on and on. But sometimes, none of it works. What then?

First, are you starting in the right place? Have you prioritized your self care? As educated care partners, we all know how important that is. But are you letting the urgencies of your loved one's care override your own seemingly less urgent needs? If you are, then no wonder nothing is working!

Before you can expect to be successful in managing your loved one's difficult behaviors, you have to be able to manage your own responses to those behaviors. Even when you know the correct response, you won't be able to do it if you are functioning in crisis mode. And that's where a care partner who has neglected their own needs can easily be. Overworked, tired, frustrated and hurting from back aches or more. This is the norm for many care partners.

"But I barely have time and energy to take care of my loved one. How can I be expected to spend more time and energy on self care?" they say. Like many of the things involved in dementia care, the answer to this question is that it may not be easy but it IS imperative. You, rested and alert, are your most important caregiving tool. You, overburdened and frustrated, are your most damaging caregiving tool. It is that simple! That's because:

• your attitude is all important. When you feel harried and overburdened, it is difficult to be patient and easy to be irritable, difficult to respond positively and easy to react negatively. You are less likely to get the result you want--which causes you more stress, more frustration and more burden.
  
• your loved one will pick up your feelings, personalize them and mirror them back at you, often magnified. Your stress becomes their anxiety. Your frustration with the situation becomes their anger at you.

Taking care of yourself involves time away from your loved one, time away from caregiving, time for yourself, doing things you enjoy. This is not selfish, frivolous or uncaring. Nor is it optional, any more than good wound care is optional. That is, you don't have to do it but if you don't, you pay the consequences. This blog isn't about how you can do this, but how you must, even if you have a limited budget. There are many ways and each care partner must choose which ones work best in their situation.

For ideas, see the many previous blogs on this site about self-care like this one, as well as many other online articles. Be sure to choose some in-the-moment practices, such as deep breathing. These shorter "quick fixes" help you to deal with immediate stress. Also choose some longer "me times", such as lunch with a friend or even a few days away. These longer respites allow you to relax, regroup and regain your focus. Revived, you can return alert and energized, ready to deal with issues that once seemed overpowering. You need both the quick fixes and the longer respites. Each plays a part in helping you deal successfully with the difficult behaviors that dementia presents to a care partner.

With ongoing self care, you can be a more alert, rested, relaxed, patient, positive, accepting, empathetic and responsive care partner. (Never perfect, mind you, but not the easily frustrated and irritated person we tend to become when we feel overburdened.) Only then can you hope to deal successfully with your loved one's difficult behaviors. Until then, you are working at cross purposes, trying to fix a damaged system with weak and failing tools--tools that actually foster worse behaviors, not better ones.

Next week, more about dealing with difficult behaviors, focusing on some of the things that can't be changed but might be worked around.

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 Riding A Roller Coaster with 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.

Thera-Fibs 2: Not Just One Kind

Last week's blog was an introduction to therapeutic fibbing (thera-fibbing), a technique useful when a loved one's thinking errors make reasoning impossible. If you haven't read it, go back and do it now. This week's blog is has more about the multiple kinds of "thera-fibs."
Remember Katie's resistance to lying to her husband? She's not alone.

I see the value of thera-fibs, but when I try to use one, I feel awful. Usually, it isn't successful. -- Katie

Katie's discomfort is too obvious and that is what Fred reacts to, not what she says. One way for Katie to overcome this resistance is to think of thera-fibbing as improv acting. That is she would respond from Fred's reality, not her own. If Katie can view herself as play-acting in Fred's "drama," and not lying, she will probably be able to use thera-fibs with less discomfort. For more about using improv with dementia, start with our 10/24/17 blog.

It used to be that I could tell Fred that his little men weren't real and he'd believe me. But now I can't. What he sees is real to him and that's that. -- Katie

Going along. Improv works well for going along with Fred's hallucination. Hallucinations are difficult for LBD care partners because this symptom can show up prior before thinking errors. Katie had become used offering her own reality to Fred and having it accepted. And then it wasn't. His dementia had progressed and taken away his ability to accept any view but his own. As it often does, it took Katie a while to catch on, But now that she has, she can just go along, nod, and even ask a question or two to show interest. She can also enter his reality and use play-acting to move his "drama" to something more comfortable for him.

Avoiding or shading the truth. Improv can work with this too. The main thing to remember here is that emotions are more important than words. The goal is always to decrease the stressful ones and increase the positive emotions. For example, if Fred is resisting going for his usual walk because the neighbor's dog triggers fears from his past, Katie can reassure him that she will protect him. She might even carry a stick "for chasing the dog off." She doesn't try to tell him that the dog is not dangerous. She simply speaks to the fears.

A white lie. Sometimes lying seems the only answer. Fred's mother died years ago, but every once in a while he asks about her or wants to telephone her. Katie has learned not to tell him his mother is gone because this causes Fred to grieve her loss all over again. Instead, she says she is on a trip, or doing something where she can't phone. "Wait a day or so to call," she tells him. And then she suggests something that they can do, like calling their son. This distracts Fred and he forgets about his first concern. Katie has also learned to avoid making promises she can't keep. For example, she didn't tell Fred his mom would be back in a day or so. He likely wouldn't remember, but if he did, she'd have to come up with another lie!

Tricks. These are setups so that the person living with dementia gets something they resist but need, such as a nap, medicine or a doctor's visit. The trick might be fairly simple, such as putting medicine in applesauce so that Fred will eat it. Or it can be more complicated like combining an ice-cream run with an "impromptu" (but actually well-planned) stop-off at the doctor's office first.

Withholding the truth. Katie and Fred were used to sharing everything. When his mother died, they grieved together. When their son won a trip to Hawaii, they celebrated together. Those days are over. Now, issues that aren't in Fred's "here and now" simply make him anxious. Katie has learned to edit them from her conversations with him. She didn't tell him when a friend passed away or when another one had a new grandchild.

Like the care Katie and Fred once took to be truthful with each other, the sharing of such sorrows and celebrations was a valuable part of their relationship. Thus, these omissions are painful to Katie. She grieves their loss even though she knows that using thera-fibbing in its various forms makes Fred's life, and therefore hers, happier and less stressful.

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
Riding A Roller Coaster with 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.

Thera-Fibs 1: A Valuable Tool

I’ve never lied to Fred and I don’t want to start now. — Katie

This is a common dilemma among care partners, especially if you and your loved one have had a long term relationship built upon honesty and trust. However, dementia changes the rules. Because LBD's thinking errors can start well before the more obvious memory, these rule changes may need to start early too.

Dementia damages a person's ability to reason, judge, compare and see other options. (3/31/2017 blog) With these gone, a person is left with concrete thinking which is:

• two-dimensional (either-or with no in-betweens)
• based on the first information received (the person's own view)
• often combined with a past emotion
• inflexible (CAN'T be changed)
• impulsive (no consideration of future consequences)
• lacks empathy (unable to put themselves in your shoes)

When Katie understands that Fred's reality is "hard wired" or inflexible, it is easier for her to accept that no amount of explanations, arguing, defending or even begging is going to change what he believes and what he acts upon. Then she can explore other ways of interacting; ways more supportive of Fred's needs than a truth he can't accept or that will cause him unnecessary distress.

Therapeutic fibbing (or thera-fibbing) is one of these methods. There's good support for this technique. When early stage dementia patients were polled, they found the technique acceptable when a) it is for the person’s own good and b) the dementia is so advanced that lie isn't recognized as such." A nursing group recommended it "when the truth would incite mental anguish, anxiety, agitation and confusion." Another group noted that unvarnished honesty can lead to distress for both care partner and loved one. Thus, thera- fibbing could helpful for Katie...and ethical--if she uses it to:

• Create safety. Ex: To stop Fred from unsafe driving.
• Enhance quality of life: Ex: To decrease the stress caused when Katie expresses a reality that is different from Fred's.
• Ensure well-being: Ex: To convince Fred to take his medication.

However, thera-fibbing is not a cure-all. It should be used in moderation and combination with other techniques, such as these:

• Change the subject – Rather than agreeing or disagreeing, Katie can bring up to a different topic as a way to get Fred to change his one-track mind to something more acceptable.
• Speak to the feeling, not the words: Identify and respond to the emotion driving Fred's behavior. If he is resisting their daily walk because of an imaginary dog that triggers old fears, Katie can empathize with Fred's fear and assure him that she'll keep him safe.
• Let it be – If Fred is peaceful and in no immediate danger, there’s no harm in letting him stay in their own reality, no matter how disconnected it may be from the present.

Next week: Thera-fibbing Pt. 2: More than One Kind

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
Riding A Roller Coaster with 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.

Finding a Lewy-savvy Pharmacist

Right now we have three books in the works (two revisions and a new one) and an international conference poster presentation to prepare. We have help with all of these, but they are taking up my time and I haven't spent much time working on blog entries. As I do once in a while I went back and looked at past blogs. I found this one from 2012. The information hasn't changed, but I'll bet our readership has!

When people ask us about how specific drugs might interact with their LBD, we often suggest that they check with their local pharmacist. And so, of course, the next question is, “How do I find a Lewy-savvy pharmacist?” This is a valid question. Although it is the pharmacist’s job to be aware various drug actions and interactions, they too, may or may not have had the training they need to be Lewy-savvy. And so it’s a good idea to check this out ahead of time.

Go to wherever you get your prescriptions filled and ask the pharmacist some LBD questions to which you know the answer. If you like the answers to these questions, you can probably trust their answers to other questions. However, remember that the same pharmacist may not always be on duty, and so be careful to ask for names and shift times. You might want to do this at several different places and chose the pharmacist you like best, even if it means changing where you do business.

The same applies to anyone who works with your loved one—physical, speech, or occupational therapists for instance, or health aides—and yes, doctors too. In each case, make your questions specific to the service your candidate will be providing. For instance, you would ask a drug question of a pharmacist and perhaps a question about fluctuating abilities of a physical therapist.

Although you may only need your pharmacist to be Lewy-savvy, you need more for those who have more interaction with you and your loved one. They also need to be teachable team players. In fact, for many of those who provide a special service, such as a speech therapist, these last two are the most important. Even if they don’t start out being Lewy-savvy, their willingness to work with and learn from you will make them so eventually.

A team player sees you as an important part of the team. They ask questions about your particular situation and listen carefully to what you have to say. They ask your opinion and include you in final decisions.

Being teachable does not necessarily mean that a person takes what you share about LBD at face value. However, they should be willing to listen, ask questions and do their own research to validate your information. On the other hand, you should be viewed as the expert on your loved one’s unique way of doing LBD—what works for them and what doesn’t.

Doctors, neurologists and other specialists need to have all three of these aspects. They need to be Lewy-savvy, teachable AND team players. However, you can do much of your search for a doctor before you ever meet them. Using word of mouth is often a good way to begin the search. Ask other LBD caregivers who they use and how they like them. If you don’t know of any other caregivers, ask on the LBDA forums or the LBD Caregiver Yahoo groups. (see blog). Also ask for Lewy-savvy doctors and specialists at teaching hospitals and research facilities in your area.

Once you have some names, make an appointment for an interview. Ask your questions and make your observations. Also, you need to be able to share information with the doctor without your loved one present. If this isn’t an option, Showtime (5/25 blog) will become an issue. Even if you decide this doctor isn’t for you, the cost of the visit is worthwhile, simply to “rule out” this one and move on to someone else. Good luck with your hunting.

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
Riding A Roller Coaster with 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.

Ten Rules for Happier Caregiving

Someone posted this on the Facebook Lewy Body Dementia Carers website recently. It is so apt, we just had to pass it on!

When dealing with a person living with dementia:

1. Agree, never argue
2. Divert, never reason
3. Distract, never shame
4. Reassure, never lecture
5. Reminisce, never say "remember"
6. Repeat, never say "I told you"
7. Do what they can, never say "you can't"
8. Ask, never demand
9. Encourage, never condescend
10. Reinforce, never force

And here's one from us as a bonus:

• Apologize, never defend

This is just the sort of information that's in our Responsive Dementia Care book, put into a simple list that you can post somewhere for quick reminders. (We all need these!!) Thanks to the Facebook poster and to her source, Cerescan.com/conditions/Alzheimers. BTW, I've been monitoring the Lewy Body Dementia Carers page for some time now and it is a very worthwhile resource. If you haven't joined yet, consider doing so right away! As for Cerescan, they are apparently an independent diagnosing company that sounds interesting but which we know nothing about.

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
Riding A Roller Coaster with 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.