Being a Caregiver
#69 Lessons Learned
After dinner, we were sitting at the table and he said, “you are very nice, and I would like to spend the rest of my life with you.” I replied, “are you asking me to marry you?” He said, “Yes.” I replied, “Of course.” What’s wrong with that story? Daniel and I had known each other since we were 12, and we had been married for 60 years. He didn’t remember.
I never planned to be a caregiver, and I wasn’t prepared or interested in being one. However, my husband, my childhood sweetheart and forever partner, developed dementia. There was no other decision to make.
I didn’t want to believe we were on that road. Daniel ate reasonably well, exercised, had a full-time job, and had various interests. We planned to age well together. How could he have dementia? But - there we were – the evidence was undeniable.
So, reluctantly and complaining, I took on the care provider role. After four years of my providing care, he died of COVID, which he contracted while in a memory care facility.
My hat is off to every person who takes care of a family member - be it a spouse, parent, sibling, child, or in-law. Whatever the cause, the length of the disease, or the outcome - giving care to another is demanding and stressful.
My experience of being a caregiver was with a spouse who had dementia, but I imagine that much of my understanding applies in other circumstances. This situation was a triple loss for me. First, it was the loss of our relationship – I went from being a wife to becoming a parent. Secondly, it was watching his loss as he struggled. Finally, it was the loss of the person I shared my life with - he didn’t know me any longer.
I knew nothing about dementia, so I read a lot. I found numerous myths and misinformation, and tips that weren’t effective. One suggestion was to make lists for the carees (persons being cared for) to follow – assuming they remember there is a list and is willing to follow it. Another idea was to get together with friends – that assumes the caree wants to get together and remembers them. A third possibility focused on neuroplasticity, the capacity of neurons and neural networks in the brain to change their connections and behavior in response to new information, sensory stimulation, development, damage, or dysfunction. I wanted to reteach Daniel the lost skills, but that was not possible.
Other articles were helpful. We had a collage of photos on the wall – pictures of people, places, and events important to him. We made a jigsaw puzzle daily. I touched him when I talked to him and reassured him that I would take care of us.
My point is that caregivers must be discerning – trying suggestions and seeing what works for their situation.
I wanted to let him have as normal a life as possible. We went places close to home, and we got together with family, but his world was shrinking. Since there was no treatment for dementia, I stalled taking him to a doctor. In hindsight, it might have been helpful to get medication for anxiety and depression. However, when he had meds to take, he often got rid of them - one way or another.
To manage the situation, I
contacted in-home respite care, but Daniel refused to allow a stranger in the house
bought a pet cam app for my phone; so I could check on him when I went out
installed a “find my phone app” so I could track him – when he remembered to take his phone
sat with him and worked on my computer when he fell asleep watching television
took over the driving – but had to lie about the reason why because he was determined to drive
checked on him constantly because he wandered off
bought him a therapy dog, which was his best friend for a while
If you are a caregiver, what tricks do you find helpful?
But the part I didn’t do well was taking care of myself. I thought I could handle it – so I didn’t discuss the situation and said everything was fine – even though my heart was breaking.
This video tells the story.
There are numerous ideas regarding self-care. Again many didn’t work. For example, one suggestion was to take a bath or go for a walk. Who would watch him? Another suggestion was to take a break. What would he get into if I did? A third tip was to take him out. Would he make offensive or rude comments? A final suggestion was to exercise, but I was too tired.
I wrote in a journal, talked with a counselor and family members, and educated myself. Most importantly, I savored the sweet and funny moments – and there were many. However, it wasn’t enough – at one point, I wasn’t sure I wanted to live, if this was my life now.
In retrospect, these are tips I would adopt as a caregiver.
Ten Essential Self-Care Tips for Dementia Caregivers says change guilt to regret and forgive yourself often.
For me, the initial regret I felt when my loved one started declining turned into guilt about how I couldn't stop her decline, how I could never do enough to make things better, and how it seems that I've never been able to find the right living situation for her.
If you feel angry, guilty, frustrated, overwhelmed, or exhausted, you are not a bad person. That's natural. If you feel resentment about your obligations or feel bad that you can't be there around the clock, that's natural. Those feelings don't mean you don't love your person. They just mean that you're human.
The article Why Self Care is Important for Dementia Caregivers suggests
Put self-care time in your calendar and stick to it like you would a meeting with someone else.
The National Institute on Aging discusses coping with emotions and stress.
Caring for a person with Alzheimer's takes time and effort. Your job can become more complex when the person gets angry with you, hurts your feelings, or forgets who you are. Sometimes, you may feel discouraged, sad, lonely, frustrated, confused, or angry. These feelings are normal.
The Family Caregiver Alliance proposes identifying personal barriers.
Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, but taking care of others is easier. However, as a family caregiver, you must ask yourself: “What good will I be to the person I care for if I become ill? If I die?” Breaking old patterns and overcoming obstacles is not an easy proposition, —regardless of age or situation. The first task in removing personal barriers to self-care is to identify what is in your way.
Taking care of a loved one may be a circumstance that people who wish to age well will encounter. Preparation, education, and self-care can make a difference.
I promised to share a couple of articles that were particularly meaningful for me each week. I hope you find them interesting, as well.