- 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.
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.
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.
- 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.
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.
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.
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.