Constructive Caring, #2: Identifying the Roadblocks

The first blog of this series was about the many advantages of being a positive care partner. However, that isn't always easy, as any care partner knows.

•  Living with negativity can be like being is high on a mountain, where there isn't enough oxygen, the path is steep and rocky and the weather is so bad that you can't see more than a few feet in front of you.
• Every step you take is scary and every step gets harder because you are getting more and more tired. But you feel stuck. You feel like you just have to keep climbing. 
• But you don't. Once you recognize your power of choice, you can stop, make a conscious choice to be positive and head back down the mountain. 
• The weather will get better, your path will be less steep, the scary rocks will turn to gravel and your energy level will improve. 
• Being negative uses up your energy and makes you feel tired and hopeless. The longer you stay negative, the harder life gets. 
• In contrast, the longer you stay positive, the easier life gets. You literally do have more oxygen, for example. You still have the same tasks but they seem easier and more doable.

This blog discusses some of the roadblocks that keep you from getting down that mountain where positivity makes life easier.

Roadblock #1: Stress. Choices, especially conscious choices require abstract thinking. That's something we learn to do as we grow up and use all the time without even realizing it. However, when you get so caught up in caregiving that you become stressed and overwhelmed, you lose the ability to think clearly or be flexible.

• These stress-related, dementia-like symptoms immobilize you and keep you stuck making the same choices you've been making, even when what you are doing becomes continually harder and less rewarding. 
• You will likely need help to escape the stress/negative thinking/more stress cycle. This is often a crisis of some sort. Sometimes, it is a confrontation from family or friends but all too often it is an accident, such as a loved one's fall or the care partner's injured back. 
• Once you've decreased your overwhelming physical, emotional and mental burden, you can do other things. But getting help comes first. Care partnering is not a one person job. 

GET THAT HELP!

Roadblock #2: The company you keep. As humans, we tend to pick up and reflect the attitudes of those around us. Like yawns, both negative and positive emotions are contagious.

• Round one: When the PlwD* loses the ability to make choices, negative thinking becomes their norm. As their closest companion, you will pick up and experience that negativity too.
• Round two: An expert at perceiving other's feelings, The PlwD takes on your negative emotions as their own and mirrors them back to you, often as BPSD.*
• Round three: You react negatively to the behaviors and it goes on and on, round after round.

But you have the power of choice! You can choose to interrupt this cycle.

• Add positive people to your life, even if just online. 
• With them as role models, you will find it will be easier to combat that immobilizing stress, think more positively and then feel better. 
• The PlwD will mirror your positive feelings just like they did your negative ones and they will feel better too.

VIEW HAVING POSITIVE PEOPLE IN YOUR LIFE AS IMPORTANT AS GETTING THE RIGHT MEDICAL TREATMENT!

Roadblock #3: Isolation. Reaching out may not be all that simple, however.
 Caregiving is demanding in time and energy, and "adding positive people to your life" may take a back seat to the other jobs you have to do. Then, when you do, it isn't unusual to find that old friends or even family can't relate with the things that take up your attention or worse, that they don't understand.

• And so you stop reaching out and isolate yourself that much more. It becomes easier and easier to feed into that cycle of negativity between you and your loved one. 
• That's where support groups come in. If you are fortunate, you have family and/or friends that can be there for you in a positive way. But often, no, usually, you need more. 
• You need to connect with people who are experiencing the same things you are and are still managing to be positive. Even if you have a hard time getting out, you can go online and connect with positive people there. Many care partners use both local and online groups. 

FIND A CAREGIVER SUPPORT GROUP AND PARTICIPATE.

Roadblock #4: Our basic negativity. Negative emotions are naturally strong. They need to be to get your attention in times of danger and push us towards safety. These stronger emotions can take over, especially in times of stress, requiring you to make conscious choices to change from being negative to being positive. The next blog is about how you change the way you think so that you can turn around and go back down that mountain of negativity.

*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

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.

Constructive Caring, #1: Introduction

This is the first blog in a series about being a constructive care partner. At one time, I'd have said it was going to be about being a positive care partner, but times have changed. As researchers learn more, we learn to use different words. We all hear a lot about the value of being positive and it's all very true. Being positive makes you happier, healthier and even smarter. And, it makes you a more effective care partner. The more positive you are, the happier and more content your loved one will be.

But there's a glitch. Most people (80%) have brains hard-wired to be negative. Add the normal stress of caregiving, and even the few naturally positive care partners more likely than likely have negative brains. Telling a negative brain to "be positive" is too big a leap; it shorts out and goes into "worry," its default mode.

"Being constructive" is about working towards a goal, about gradually building a better life for you and your loved one, not a done deal like "being positive." That's our first work-around--watch for others! Negative people still have positive feelings--they just need noticing and nurturing. Sometimes, these get lost in the business of living, when the logistics of caregiving get in the way and the "fun" things aren't even noticed, let along enjoyed. (Reference)

The problem with negative emotions is that the brain views anything causing them as dangerous and therefore, urgent. These feelings grab our attention quickly and emphatically, overshadowing everything else. Then this "urgent" information gets pushed immediately into long term memory, bypassing much of the abstract thinking that keeps us on an even keel. Thus, negative thinking can be similar to that of the person living with dementia--and of stressed-out care partners: general, polarized, catastrophic, and personalized.

In contrast, equally important but non-urgent positives are processed slowly. Even after they get past those grabby negative emotions and manage to attract your attention, you have to keep them on your radar for over ten seconds to be remembered. A lot can--and does--slip by in that time. Work-around #2: Make a conscious choice to be aware of words, things, people and events that make you feel good. Once you notice them, make a conscious choice to pay attention to them and enjoy them.

"Why?" you ask. "Why should I spend my already limited time and energy on this? Why not just flow with it and accept the pain, the anger, the worry, the fear? Isn't that real life? Isn't it rather Pollyannaish to try to make it all more positive, uh, constructive?"

Ah, but Pollyanna was a happy person! The advantages of being happy are great for the individual and even greater for a dementia care partner because you are "feeling for two." That is if you choose to be happy, your loved one will mirror this and feel happier too. That's the first advantage, but there are a lot more:

• Your loved one's happier, more content attitude will result in fewer dementia-related behaviors.
• With less energy wasted on energy-hogging negativity, you will actually have more energy for your job, your loved one, others, yourself and life in general.
• You will be healthier. Positive people are less at risk for most diseases, including dementia.
• You will be less stressed, thus have more energy and clearer thinking.
• With a clearer mind, you will see the broader picture and make better decisions.
• You will accomplish more, resulting in better self-esteem.
• You will feel emotionally stronger and better able to face the tasks you must do.

While caregiving can still be overwhelming, you will find it easier when you do it with a positive, can-do attitude. The more positive you become, the more others will enjoy being around you and you'll find that your positive attitude will rub off on them.

Next week: more about negativity and making conscious changes.

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.

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
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

Dental Care

You may have noticed that your loved one isn't brushing their teeth so much anymore. Dental care is important for a variety of reasons. The bacteria from inflammation of the gums and dental plaque is linked with heart disease, pneumonia, stroke, diabetes, dementia and rheumatoid arthritis. It is important to maintain good dental hygiene and continue regular checkups. However, this can all become difficult and easy to skip.

• If LBD* is involved, they may have forgotten the steps involved in brushing. "Do I put the toothpaste on the brush before or after I rinse it off?" "How do I brush?" "What do I do with all the fluid and foamy toothpaste that ends up in my mouth?"
• Age, illness, some medications and dementia itself can decrease saliva output, creating "dry mouth" which can make toothpaste and mouthwash taste different, and possibly unpleasant. The efficiency of taste buds also fades with age, changing the person's taste preferences.
• Your loved one may no longer understand the need for brushing and may not want to be bothered, especially since they may need to be helped to do it correctly. 

As you do with other activities of daily living, encourage the PlwD to do as much brushing and flossing as possible on their own and help only when you really must. Here are some tips that may help if you have to do the brushing:

• Monitor your attitude. Make this as fun as you can and it will be much more pleasant for both of you. Try not to argue or be bossy. If, for instance, it feels awkward to do something so personal for a parent, get over it. The more comfortable you are, the more comfortable the PlwD will be--and the more accepting of your help.
• To address the dry mouth issue, have your loved one rinse their mouth with water right before starting care.
• Have them sit in a comfortable chair with you seated slightly behind them.
• Use a soft toothbrush to gently but thoroughly brush their teeth.
• Be careful not to tilt back the head when you brush. This can cause aspiration of liquid into the lungs.
• An electric toothbrush is usually faster than doing it by hand and therefore, less annoying. If the noise of the brush or the vibrations produced by the fast-moving bristles is upsetting, you may have to revert to using a regular toothbrush.
• Experiment with toothpastes and mouthwashes to find ones the PlwD likes. Brushing without toothpaste is still very effective. Mouthwashes help to control bacteria, but may irritate the gums. Try diluting the mouthwash with some water or else try another brand. Stop using mouthwash if it becomes an issue.

Thanks to Health After 50's article on Dementia Care: Oral Hygiene for most of the information in this blog.

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

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.