Family Caregivers

#80 Additional Thoughts.

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Photo by Alysha Rosly on Unsplash

If you are already an Aging Well News reader, you know my story. If you are a new reader, here is the short version. My husband, Dan, and I met when we were 12 – he was the boy down the street. We were married for 63 years – best friends and partners.

We both had full-time jobs after retirement, exercised, cut out the chips and fried foods, took no prescription drugs, went out with family and friends, and shared our lives.

We noticed his memory was less sharp, but he compensated. Then he had an emergency surgery that entailed anesthesia, a boatload of medications, and a nine-day hospital stay. His body recovered, but his mind never did. His company retired him. He lost his desire to live, and died of COVID in a memory care facility.

In retrospect, I wish I’d been aware of the potential risks involved or gotten a second opinion before agreeing to the surgery. To read more about lessons learned, click here.

I was Dan’s primary caregiver for four years. I was ill-prepared to take on this role, nor did I  want it, but he was my husband and my love - there was no choice in my mind.

In the article, Being a Caregiver, I discuss actions I now know might have been advantageous. To read more, click here.

Dan switched back and forth between knowing something was wrong and denying there was a problem. He made a doctor’s appointment and refused to go. He agreed to put financial accounts in my name and then was unwilling because that was his job.

We no longer made decisions together - I was living my life and his.

My goal was to keep him home, but his behavior became unmanageable, and safety was a major concern. So, I had to make the awful decisions to place him in a memory care facility and to decline further treatment when he had COVID.

To this day, I wish there were more that I could have done.

Generally speaking, people have a backpack of tricks and suggestions as they care for family members. However, there is less information regarding actions a person can take to prepare for such a circumstance or how to manage after they are no longer in that position.

I am a psychologist. I had lots of tools, but they were not enough. In this article, we will take a further look.

Let’s begin.

PREPARING TO BE A CAREGIVER

In retrospect, I would have prepared for taking on the role. At first, we thought Dan’s memory loss was temporary - so said the anesthetist, but that was not the case. Even so, I could have begun educating myself about dementia and organizing a support team just in case. Instead, I dealt with issues as they arose. There was no plan - that would have been helpful.

The CaringInfo website offers numerous ideas in the article Preparing and Getting Organized for Becoming a Caregiver. The authors suggest people keep in mind that

• Caregiving can be difficult, complex, and overwhelming. Try to aim for good enough rather than perfection.

• Some family members rise to the occasion. Others don’t. Forcing them to help is impossible.
  But you have to let them know about the situation, I was silent for a long time.

• Your greatest gift is your presence.
  As Dan progressed through the disease, the only person he trusted was me.

The article 5 Tips For a First Time Caregiver offers ideas. Here are four of them.

Get Support - When a team shares the load, the caregivers involved are less likely to become stressed out, which leads to better care for your loved one. In addition to friends and family, check with local social services or agency on aging to find out what programs are available to assist.

Educate - Learn everything you can about your loved one’s condition. This knowledge can help you meet their present needs and prepare for the future. Take time to familiarize yourself with care options such as assisted living or in-home care. Then you avoid scrambling as your loved ones’ needs rise to a higher level of care.

Make sure your loved one will accept in-home care. Dan wouldn’t allow a stranger in his home.

Be Organized - You will be keeping track of an overwhelming amount of information. There will be medical appointments to remember, medications to keep track of, and phone numbers to keep on hand. Finding a system to organize all of this information is vital.

Rather than relying on lists, some caregivers use programs and apps to give them easy access to health information. Other apps can help with scheduling, meal planning, and many other aspects of caregiving.

Help Your Loved One Adjust - It’s never easy to deal with the loss of independence. Many seniors find it challenging to admit they need help with tasks they used to accomplish on their own. With that in mind, allowing your loved one to maintain as much independence as possible is essential. To the extent you can, involve them in conversations and decisions about health, finances, and living situations.

Dan did not adjust - he never accepted he had a problem. So, there were no discussions, and he was not involved in the decisions.

IF YOU ARE CURRENTLY A FAMILY CAREGIVER

You have probably read numerous tips about how to manage. Here are a few reminders.

The Family Caregiver Alliance found that family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, race, and ethnicity, they report problems attending to their health and well-being while managing caregiving responsibilities. Caregivers may experience sleep deprivation, poor eating habits, an unwillingness to exercise, and postponing or not making their medical appointments.

The Mayo Clinic addresses Signs of Caregiver Stress

As a caregiver, you may be so focused on your loved one you forget about your health and well-being. Signs of caregiver stress include:

• Feeling overwhelmed, sad, tired, or constantly worried.

• Getting too much sleep or not enough sleep.

• Gaining or losing weight.

• Becoming easily irritated or angry.

• Losing interest in activities you used to enjoy.

• Having frequent headaches, bodily pain, or other physical problems.

• Abusing alcohol or drugs, including prescription medications,

I used these resources.

While there are many online resources, the UCSF website offers tips for handling common challenges for caregivers. Some are easier said than done. You will need to determine what works for you.

It wasn’t easy to take time for myself. Dan wandered at night. Keeping an eye on him became a 24/7 job, and he wanted us to do things together. I took short walks but was concerned about his safety. I installed a pet camera in the house and added the “track my phone” app. He was jealous when I spent time with anyone but him.

AFTERWARDS

When your caregiver duties are over - then what?

I am building a new life now that I am no longer providing care.

As the Pathways website says

You’ve spent weeks, months, maybe even years caring for your loved one. The loss is devastating, whether you are a parent, spouse, aunt, uncle, best friend, or child. You may feel relief now that they are no longer suffering. You may feel overwhelming sadness, guilt, regret, and anger. The list of emotions goes on and on.

One feeling you may not prepare for is loneliness. It’s common to feel an emptiness after your loved one is gone, not just because they’re no longer physically there but because you don’t know what to do with your time now.

The Family Care Giver Alliance article, When Caregiving Ends, was one of my resources. Take a look.

Although I wasn’t prepared to be a care provider and didn’t want the job, there was value in the experience. I allowed Dan to have the most normal life possible for as long as he could, and I also discovered my resilience, courage, and undeveloped skills.  

So, if you find yourself giving care to a spouse, child, parent, or sibling - prepare as much as possible, take care of yourself first - only then will you be able to take care of someone else, and take time to recover afterward.

My favorite post this week was Walking Through Widowhood.