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

Friday, April 20, 2018

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

Friday, April 13, 2018

Choosing Your Attitude, Part 2

This is the second in a three part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasures in the Darkness. Last 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. This week's blog is about being perceptive. A lot of this has to do with being empathetic, which is a subject we will cover thoroughly in our next book, coming later this year.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
  • Softening the light in the room
  • Using oils like lavender to calm agitation
  • Playing favorite music
  • Having only one person speak at a time while in the room
  • Explaining what you are about to do before you begin to do it
These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

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

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

Friday, April 6, 2018

Choose Your Attitude, Part 1

This week starts a series on attitude by our friend Pat Snyder, author of Treasures in the Darkness. This is one of the lessons in her caregiver classes (with comments from me in italics). She recommends five steps for the beginning care partner. Actually, any care partner can benefit from these steps, no matter where you are in the journey. These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.
  • Be positive
  • Be proactive
  • Be perceptive
  • Be persistent
  • Personify the disease
This week's Pat's steps are a) being positive and b) being persistent:

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. (I call this making a conscious choice...something you must do if you want to think positively.) There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia. (Pat presents a great introduction to being positive. Look for a multi-part series on the subject, coming later in May.)

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:
  • Learn about dementia symptoms.
  • Learn about treatments for LBD symptoms.
  • Learn about non-pharmacological (non-drug) interventions.
  • Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
  • Find the right doctor who knows how to treat LBD
  • Connect with other LBD caregivers to continue strengthening yourself.
When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team. (If you must choose between a Lewy-savvy doctor who doesn't respect your participation and a less Lewy-savvy doctor who does, choose the latter. You can teach information but you can't do your job without respect!)

Next week is more from Pat: Be perceptive.

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 for sale.

* 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
LBDA: Lewy Body Dementia Association. LBDA.org is their website.
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