Care Partner Pt 2: Challenges and Blessings

Last week's blog started the year out with a discussion about care partnering and what it involves. This week's blog continues that discussion with a focus on challenges and blessings.

As shown last week, the job itself can involve many aspects, each of which can be challenging physically, mentally and/or emotionally. But other challenges that make a care partner's already difficult job even more difficult include elevated sense of burden and reactions due to changes in their relationship with their loved one that result in stress-related:

• Depression, due to feelings of loss, ineffectiveness, frustration, tiredness, etc.
• Higher risk of heart disease and headaches, due to increased fight and flight hormones.
• Digestive problems, due to stress induced decrease in digestive functioning.
• Disturbed sleep, due to their loved one's interruptive sleep behaviors.

It's no surprise to care partners to read that their job is challenging. They already know this from personal experience. However, there is also scientific proof. We talk a lot about using biomarkers to help diagnose our loved one's diseases, but they can also show evidence of the challenges that care partners face. Biological marker abnormalities among caregivers include:

• Increased cortisol secretion, a stress-related hormone.
• Abnormal glucose regulation, caused by hormones that add energy for a short term flight/fight reflex but tax a body's insulin production when stress is chronic.
• Inflammation, a normal response to foreign bodies, that becomes harmful when stress is chronic.
• Weakened immune system, when a normal decreased immune response is extended by chronic stress.

Even so, care partners find it difficult to seek out the help they need due to being:

• Too overwhelmed. Seeking help may seem like just one more job in an already too full workload.
• Too depressed. Depression can take away a person's ability to initiate...or in this Increased stress reactions associated with altered relationship dynamics, elevated sense of burden and depression
• Too frustrated. Frustration is a negative emotion that motivates action but that action is seldom positive or helpful. More likely it instigates anger which only makes the situation worse.
• Too isolated. It is essential to have open discussions to maintain well-being but dementia care can be quite isolating, as friends fall away and the job becomes to demanding to allow outside interests.

However, dementia care partnering isn't all negative. Care partners can experience a variety of positive feelings and emotions. Many care partners say that even though the job is difficult, it can also be rewarding. Perceived benefits associated with caregiving include:

• The opportunity to give back. Giving is a positive feeling that always helps.
• Improved relationships. As care partner and loved one learn to work closely together, a new and sometimes, better relationship can appear. This relationship will change as the disease degenerates however.
• Feeling good about the quality of care. Most care partners know that they can provide better, more individualized, care for their loved one than a care facility can.
• Serving as a role model for others. This is most likely to happen in a support group and is one of its important values.
• Increased self-esteem, a normal result of feeling useful and needed.
• An enhanced sense of purpose. Care partnering is a demanding job and expending the effort to do it well feels good...as long as it doesn't get so difficult that it becomes burdensome.
• Feelings of pleasure and satisfaction. These can vary greatly, from the pleasure of a job well done to seeing the contentment of one's loved one to being more appreciated of personal time when it occurs.

A good share of the information for this blog came from Dr. James Galvin's presentation at the 2019 International Dementia with Lewy Bodies Conference.

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
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.