A Real Challenge!!

A recent report, Caregiving in the U.S. 2020, written by The National Alliance for Caregiving (NAC) and AARP (American Association for Retired People), noted that the number of family caregivers went from 43.5 million to 53 million in five years. That is an increase of 9.5 million individuals.

Because life expectancies are rising, medical treatments are advancing, and chronic health issues are increasing, more and more people find themselves caring for their loved ones at home. According to the report, one in five family members are care givers and 23% of them report fair to poor health. Reluctantly and unfortunately, I was the one in five.

Whether you care for an aging parent, tend to a handicapped spouse, or look after a child with a chronic illness, you have an enormous challenge - a challenge that can impact your health, your well-being, and your ability to age well.

My husband and I planned to age well. Our goal was to spend the rest of our lives together and be who we wanted to be despite any life challenges or stressors. Sure, we would have to adjust but that was OK - 5K races were out and long walks were in.

Even, in our 70’s, we exercised, ate nutritiously, worked full-time, and had fun together. His memory was not great and I had eye surgery, but we were healthy and enjoying ourselves. Then, our lives changed irrevocably when he had surgery followed by a nine-day hospital stay. His memory was dramatically affected and never recovered.

His ability to age well was curtailed because he forgot so much, became less self-confident, and lost his job. At first, I was able to adjust our aging well with his abilities. I saw myself as a care partner supporting him in his endeavors while pursuing our goals. That worked for a while. But his abilities became less and I had to do more. Still, we managed.

Then the pandemic arrived! We couldn’t go out, people couldn’t visit, and I was his sole care provider. His behavior declined drastically, he became argumentative and nasty. He saw things that weren’t there and did things that weren’t safe. More of my time and energy was spent watching out for him. I lost weight, became discouraged, and, at times, wondered if life was worth living.

Soon, all I did was monitor him: where was he? was he safe? what was he doing? and was he okay? There was no longer time to pursue aging well. The goal was to survive from day to day.

Ultimately, I couldn’t continue living both of our lives and last summer he went to a memory care facility. My hope was that if he were in a safe environment with lots of people around, the quality of both our lives would improve. Maybe he would be able to age well there and I would be able to age well on my own. But, no!

He didn’t adjust to the new environment and pandemic restrictions were in place. I was his advocate, but saw him rarely. When he contracted COVID and died, I could not be with him. That was not what I had in mind. Even now, aging well is colored with loss and a long “to do” list.

When he was home, I read numerous ideas about how to manage better. Most weren’t helpful! One suggestion was to remain social and get out. He couldn’t be left alone, he refused to have a respite care person in the house, and he didn’t want to go anywhere. That was not possible. 

Another suggestion was to get enough sleep. He went to the bathroom half dozen times a night. He got lost on the way and wandered all over the house. One night I found him in the closet. I was hyper-vigilant at night.

A third suggestion was to take a bath, read a book, watch a movie, or do a favorite activity. There was little time or energy left and who knew what trouble he might get into during even a short period of time.

Something had to be done, though, because the physical and psychological toll was causing burnout. I was no longer able to balance his needs with mine.  For 60 years, I related to him as a wife and now I had to relate to him as a care provider. We no longer made decisions together. I made them and told him what to do. His demands were unreasonable and my expectations were unrealistic about what we could do.

I was exhausted, anxious, angry, and unable to cope which led to a short temper, despair, and a lack of focus.

Which brings me to the question “in retrospect, what could I have done differently?”

First What Worked

The one activity we shared was making jigsaw puzzles. He strongly complained as we began each new one, but got engrossed in the challenge and enjoyed himself. It was the nicest time of the day.

We already had a will and the Power of Attorney in place, which was important.

It was also helpful for me to take a daily walk, but there was an app on my phone that allowed me to check on him. I also wrote my fears and frustrations in a journal, talked with a counselor, and used time when he was asleep to work nearby.

What I Would Do Better

Maybe, because the symptoms were minimal until the surgery and then we were led to believe the situation was temporary or, maybe, it was just denial - no matter, I wasn’t prepared.

  • Had I taken his symptoms more seriously, I would have read more about the disease and known more about what to expect. Then I could have been more proactive – preparing for possible situations ahead of time.

  • I would have gotten additional support and been more assertive.

  • Part of the challenge was his resistance. He refused to go to the doctor, he refused to go out, he was nasty when I went out, and nasty with home care workers who attempted to provide a respite. So, setting firm boundaries about his behavior and how he treated me would have helped. As they say you teach people how to treat you.

  • We could have put a camera in each room of the house to monitor him.

  • He could have had a GPS in his shoe for times when he sneaked out.

  • I could have been more compassionate with both of us.

  • Short breaks might have provided some respite, so would getting up earlier, staying up later, and doing whatever possible to give myself space and time.

What I Would Do Differently

Now, the answer is obvious. I would take better care of myself. The focus was always on taking care of him.

On an airplane, when an oxygen mask drops down in front of you, the first rule is to put on your mask before you assist anyone else. Only when you first help yourself can you effectively help others.

Caring for the self is one of the most important—and one of the most often forgotten—things people can do as caregivers. When their needs are taken care of, others benefit as well.

The Family Caregiver Alliance offers excellent information. Click here for further information. See what works for you. Several tools they suggested for promoting self care stood out for me.

Identify Personal Barriers. Many times, attitudes and beliefs stand in the way of caring for the self. So, the first task is to identify what is in your way.

Reduce Personal Stress. The stress you feel is not only the result of your situation, but also the result of your perception of it.

Set Goals. Decide what you hope to accomplish in the next three to six months. Then ask yourself “What steps must I take to reach my goal and make a plan.

Focus on Solutions. Once youʼve identified a problem, taking action to solve it can change the situation and also change your attitude to a more positive one, giving you more confidence in your abilities.

Learning From Your Emotions. Emotions are messages we need to hear. Even feelings such as guilt, anger, and resentment contain important messages. Learn from them, then take appropriate action.

So, in terms of aging well as a care provider – the most important step is to first take care of yourself. There really must be no excuse and you must find what works for your situation.

I know full well that putting yourself first is easier said than done when providing care to another, but if you are to age well - if you are to survive - it must be a top priority.

According to Health Central

A new study by Ohio State University in conjunction with the National Institute on Aging has shown that adult children caring for their parents, as well as parents caring for chronically ill children, may have their life span shortened by four to eight years.

As you grow older your situation may change and your ability to age well may be different. You might have to set aside hopes and dreams or modify them, but you can still do the best you can with what you have. Take care of yourself first, assess where you are at, and be prepared.