The night after Dan’s surgery, I lay in bed, unable to sleep. I worried about how I would manage, whether he would recover, and what it meant for our life. I committed to doing whatever it took to help him return to normal. At that moment, I had no idea that the surgery would not be an issue, but the further damage to his fragile memory would be - for the rest of his life.
Caregiving occurs in more ways than I realized. I was responsible in a practical way: I kept appointments, paid the bills, did what I said, and was trustworthy. However, I needed to be more aware of the emotional, mental, physical, and spiritual responsibilities required to manage this new situation for both of us.
I read articles, books, and websites, attended a workshop, and talked with numerous people as I struggled to adjust to this new reality. I was often disappointed - the suggestions didn’t work - because
They didn’t address Dan’s evolving aggressiveness or the nature of our 70-year relationship.
They offered a single approach. Experience taught me that caregiving involves a multidimensional one.
Most of those articles focused on working with the patient, but few focused on the caregivers’ needs.
If I were in that situation today, I’d have a better plan that included caring for both of us. It would change over time, but I wouldn’t be in a crisis mode - perpetually reacting, overwhelmed, and depressed.
The plan begins with me - the caregiver - knowing what I can handle, as discussed in the article Not Everyone is a Natural Caregiver. But, it would also include Dan’s needs and address multiple components.
Let’s look more closely at those aspects.
Emotional
I have a psychology background; I know how to manage my emotions - or so I thought. But most of the time, I felt as if the weight of the world were on my shoulders.
I could only imagine Dan's confusion, frustration, and anger when he couldn’t do things he’d done easily for years, like managing the finances, using a computer, and driving the car.
I worked with him, but he couldn’t remember. I could solve his worries at 12:10 p.m.; at 12:15, he’d have forgotten and was worried about the same thing again.
Mental
Having Dan change from my caring, competent best friend to a cranky, argumentative old man who had to look at his wallet to remember his name created the need for me to figure out how to manage the changes in our lives and identify new ways to cope.
Dan could no longer think things through rationally - explanations were in vain.
Physical
I didn’t sleep well. Dan wandered during the night and got lost in the apartment. Worries kept me awake. We weren’t exercising as much or eating well, either. He craved sweets, hid the vitamin pills, and made unsafe decisions.
Spiritual
I view spirituality as living one's morals and ethics rather than adhering to religious activities, which meant acting on my values even though I wanted to do something else.
Dementia caused Dan to lose touch with his values, and after his company asked him to retire, he lost his purpose for living.
Practical
I did well with the practical issues - I took on more household chores, supported him, and did what he could no longer do.
We’ll talk more about a plan in a future article. But until then, here are some links you may find helpful.
The CaringBridge website
The AARP website
Being prepared would have made caregiving more manageable for me.
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Being prepared would have made caregiving more manageable for me.
Nice post, thank you for your insights!
I'll just add here too that 'The stress of caregiving can influence the immune system, and result in reduced immune responses'