Choosing Your Attitude, Part 4

This is the last in a four part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasure in the Darkness. The first week's blog was about being positive and being proactive. If you want to learn more about being positive, our own multi-series blog on the subject will start in May. The second and third blogs in this series were about being perceptive and being persistent. This week, it is about personifying the disease. We've often taught care partners the mantra "It's the disease, not the person," but Pat takes this a step--or more-- further. She makes some good points!

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name---Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road.

All of a sudden, John barked at Michael harshly and told him he needed to be quiet.

Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence.

This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.”

The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.

Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish.

I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.”

John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

The steps in the last four blogs (be positive, be proactive, be perceptive, be persistent and personify the disease) lay a foundation for a gentler journey. If you missed any, be sure to go back and read them. Pat finishes her class by telling her students that each step helps them stay ahead of the disease, have more control over their lives and make you a better caregiver.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Choosing Your Attitude, Part 3

This is the third in a four part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasure in the Darkness. The first week's blog was about being positive and being proactive. If you want to learn more about being positive, a multi-series blog on the subject will start in May. Last week's blog was about being perceptive. This week, it is about being persistent. Any gradually degenerating disease requires staying power. And if the disease is LBD, you need even more persistence as you deal with people who may know less about LBD than you do.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable -- and it is worth it.

Next week, Pat will talk about personifying the disease.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:

 AD: Alzheimer's disease

BPSD: Behavioral and psychological symptoms of dementia

DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first

LBD: Lewy body dementia, an umbrella term for both DLB and PDD

MCI: Mild cognitive impairment

MCI-LB: the form of MCI that precedes LBD

PD: Parkinson's disease

PDD: Parkinson's disease with dementia, where mobility issues occur first

PlwD: person/people living with dementia

PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

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

Reduce Stress to Increase Other Treatments

Reduce Stress to Increase Other Treatments

We attended the Northwest Parkinson Foundation’s HOPE Conference in Spokane on August 25^th. We were disappointed that the speaker from Arizona, Dr. Santiago, wasn’t there after all to talk about the non-motor aspects of PD. Still, it was a good conference and we came away with lots of things to think about and consider. Dr. Monique Giroux spoke on Mindfulness and Healing. Expect to see blogs about subjects she brought up in the future like the value of positive thinking or yoga. Do go to her Wellness Center  and learn more about these and other non-drug methods for controlling your PD (or LBD). It is a limited resource at present but she promises that it will grow. Dr. Ford spoke on the importance music and exercise and had us all up dancing.

Dr. Giroux emphasized that exercise is important, but she said, we need to lower our stress for it to be very effective and supported what she said with impressive research results. Dr. Ford followed that up by showing us how we can use music combined with exercise that we enjoy to lower stress levels—and increase functionality, at least temporarily.

This made a big impression on me later as we were walking to our car, after having spent a lot of energy dancing to Dr. Ford’s music. I’m not used to exercising that much and I should have been tired, but I wasn’t. I’d been having fun and my stress levels were down. We’d parked what turned out to be a very, very long way from the meeting room and normally, by half of the way back, even without the extra exercise, my arthritis would have been at full blast and I’d have been hanging on to Jim, dragging after him, and wearily putting one foot in front of the other with my whole focus simply on making it to the car where I could sit down and recover. Instead, I found myself walking happily along beside him, my arthritis forgotten and with enough energy to be able to chat about what we’d just been doing and what our plans were for later.

And so, I thought, this “better exercise without stress” formula works for any issue—PD, arthritis, LBD, etc. It’s like a physical law: Reduce stress if you expect other aspects of your treatment to work. That goes for drugs too, I’ll bet—or good nutrition or adequate sleep. What do you think? Do you have any experiences like mine involving decreased stress?

Taming LBD

No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.

You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.

Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.

The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.

Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”

Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.

Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.

The Three A's: Assessment, Adaption and Acceptance

Being continually aware of how your loved one is doing—what triggers stress, what brings peace. Noticing the little things before they get big. Keeping your doctor’s appointment. Evaluating how the medication works—or doesn’t work. Keeping track of the behavior patterns, the cognitive levels, etc., etc. That’s the assessment part. You and the doctor need to know what you are dealing with and you are the one on the front lines. You do the first assessments—and if you are smart, you write it all down. Not only is a written record valuable to your doctor, it is to you too. You are a busy person and can’t be expected to remember every little thing. Some little thing that you document may be just what you need when you are trying to figure out what triggered your loved one to act out, for instance.

And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”

And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”

When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”

What more can I add?

Thank you, Lisa, for letting us use your insightful online support group entry.