Riding the Wave of Change

It was a month or so ago. The diagnosis. The kind that is terminal with minimal, life-prolonging treatment. The kind that leaves you numb; stunned. The kind that means there is little more to do than to ride the wave of change.

To be fair, any diagnosis is life changing. Long-term or short-term. Curable or incurable. It’s devastating power changes the current trajectory of life. Like arrows behaving as a boomerang, the sharpness pierces deep into the soul of the informal caregiver and the care recipient. Life changes. Learn to ride the wave of change.

Change in Routine

I am not a morning person. I mean, please don’t talk to me first thing in the morning. Light and noise are not my early morning friends. I prefer to work out first thing in the morning in a quiet, dimly light room in the basement of our home. Then I like time to meditate quietly by myself with the aid of YouTube. After about an hour I am ready for conversation and breakfast.

My care recipient is the opposite. Upon rising, the lights are on. The television is on. And breakfast is ideal.

Neither is right or wrong. It is our individual preferences. Informal caregivers, though, walk the delicate balance of respect and dignity while also maintaining our personal routine. It is easy to become engulfed in the caregiver role; to cater to the needs of our care recipient adapting to their regiment at the demise of our own needs. As noble as this seems, it is the precipice of our personal decline.

Routine promotes structure and normalcy. Both of which informal caregivers definitively need in the ever-changing landscape of caregiving. How can you maintain or adapt your routine? Here are a few suggestions:

Do not entertain guilt

Remember, there is nothing wrong with having your own routine. In fact, it is to your care recipient’s advantage to engage in your routine as much as possible. It establishes a sense of normalcy.

Set boundaries

The needs of our care recipient can quickly overshadow our own needs. Of course, I am not advocating neglect, but balance.

Give yourself a ten-minute break each hour

Just ten minutes can be an oasis of refreshment. Breathe. Meditate. Dance. Sing. Drink a cup of coffee. Do what relaxes you and brings you back into balance.

Make adaptions to your routine

Maybe you run several miles a day. While that may not be feasible now, adapt your routine. Run inside. Run less miles several times a day. Find a way to adapt your routine that accommodates you and your care recipient.

Enlist help

If you can, enlisting help is ideal to refresh yourself and make room for your routine. Enlisting help is not a sign of weakness. It takes great strength to ask for help. Whether it is a neighbor, friend, family member, or trained professional, accept the help for the betterment of your well-being.

Change in Autonomy

Do you sense your autonomy waning? Rather than being influenced by someone else or being told what to do, autonomy promotes personal decision making. Autonomy enhances one’s individualism and directly impacts independence. Through autonomy, our individual uniqueness blossoms.

Over the course of the caregiving role, an informal caregiver’s autonomy may diminish by the following life changes:

Change in needs of care recipient

There is an inverse correlation between a care recipient’s loss of independence and an informal caregiver’s autonomy. The more that is required from the informal caregiver, the less autonomy the caregiver can exert.

Changes in career/job

Often the work environment provides a sense of purpose and belonging. When our employment status changes, our sense of autonomy also suffers.

Statistics by the National Alliance for Caregiving and AARP regarding informal caregiver employment are nothing short of alarming.

• Sixty-one percent of caregivers experience at least one change in their employment due to caregiving such as cutting back work hours, taking a leave of absence, receiving a warning about performance/attendance, among others

• Forty-nine percent arrive to their place of work late/leave early/take time off

• Fifteen percent take a leave of absence, 14% reduce their hours/take a demotion

• Seven percent receive a warning about performance/attendance

• Five percent turn down a promotion

• Four percent choose early retirement

• Three percent lose job benefits

• Six percent give up working entirely National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.

Clearly changes to one’s employment coupled with an average of 20 hours per week of informal caregiving, result in increased stress and diminished autonomy for the caregiver.

Change in socialization

Do you know that a lack of social connection is as hurtful to one’s health as smoking fifteen cigarettes a day? And isolation among informal caregivers translates to a 64 percent likelihood of developing dementia. As caregivers spend more time caring for their care recipient, social isolation creeps in along with depression, resentment, and anger. A loss of socialization cannot be understated.

Autonomy is crucial to our personal well-being. Even with the constant demands of caregiving, there needs to be room for autonomy. Here are some ideas to nourish your autonomy.

Recognize small choices:

• Choosing to have a cup a coffee

• Choosing to have a conversation with your care recipient or with a friend

• Choosing your clothing for the day

Recognize what you do have within your control:

• Your attitude

• Your perception

• Your presence

Change in Relationships

You take on this noble task of caring for your loved one, but no one talks about the relational changes that occur. A role where no relationship remains intact.

Parental

Instead of a mother-daughter relationship - someone I relied on for guidance and support - the relationship shifted. Now I was the one giving the care, guidance, and support.

Spousal

The spousal relationship changes, too. Communication, intimacy, and bonding wane, shifting over the course of the disease progression.

Siblings

Perceptions, birth order, and attachment/non-attachment meld together. Sometimes the result yields cooperation with supportive insight. Other times the mixture yields friction, resentment, and discord.

Here are some measures to take when relational changes occur:

Express appreciation

Overall siblings mean well. Learn the delicate art of gratefulness while also maintaining boundaries.

Respect and accept

Each sibling has a unique perspective. Accept these perspectives as part of the whole picture. Show appreciation and understanding.

Communicate effectively

Situations are often emotionally driven, tense, and escalate easily. Be mindful of tone, volume, and non-verbal signals. When a consensus is reached, celebrate that; otherwise, generally one sibling (POA) makes the final decision with respect and consideration.

In all the uncertainty of caregiving, change is the only certainty. Informal caregivers benefit from the experiences of one another. How do you ride the wave of change? Leave a comment.

Wishing you wellness!