Family Dynamics of Caregiving When a Spouse is Primary Caregiver

Family caregivers have much too do in a little time to accomplish what is needed.

They work hard to juggle all the balls involved when caregiving day in and day out.

There may be medications to administer, meals to prepare, clothes to wash, doctor’s appointments to keep, a senior loved one to entertain, and more – –  just in the morning!

The rest of the day holds many more tasks that can be simple, complex, enjoyable, frustrating, and require nursing skill you didn’t know you had!

Caregivers can use extra hands to get all these small and large jobs done each day. Don’t you wish you were an octopus sometimes so that you could do more than one thing at a time?

Some family caregivers are fortunate to have a wealth of nearby helpers, whether family members or paid, while others are alone to accomplish it all!

Spouses as Caregivers

Many family caregivers are spouses caring for their partners. They are both aging and doing their best to care for each other’s needs.

Neither one is enjoying their golden years, which may be getting tarnished. Gone is the dream that they will enjoy aging in health and happiness, walking hand in hand down the beach or on the front porch swing.

For many, they are stressed to care for the needs of their loved one and finding a diminished quality of life for themselves.

New research from the University of Arizona, by co-author Dr. David Sbarra with joint appointments in Family Studies and Human Development and the Evelyn F. McKnight Brain Institute, has highlighted the fact that the quality of life of an older person is largely dependent on the health of their partner. The findings were published in the journal Psychology and Aging.

It’s not too surprising to imagine a senior’s quality of life can be negatively impacted when caring for their spouse. Stress, fatigue, anger, disappointment, resentment and a wide range of emotions can lead to decreasing quality of life.

Traveling as a couple is limited if one person’s mobility is impaired. Certainly socializing with your peers becomes a struggle when dementia enters the picture and your spouse can’t keep up with the crowd.

It doesn’t matter how nice your friends are, they often won’t hang out when there is stress involved and will quietly fade from your circle. Losing friendships and one’s identity is not uncommon when caregiving takes over.

Dr. Sbarra feels that it will be vital to look at both partners who are aging when we develop programs to meet the needs of elders.

Older married couples are interdependent and need to be treated that way especially when attempting to aid cognition and physical health with interventions. They should be treated as a unit.

Effects of Caring for a Spouse

Despite that fact that at the current time more women are providing care for their spouses, that balance is anticipated to swing to a more even distribution in the near future.

When spouses provide care for those over 75, each typically provide equal amounts of care. The median age of spousal caregivers is 64.

According to the National Family Caregivers Association, over 56% of family caregivers are caring for spouses. In addition to caregiving, the typical caregiver is employed and works full time.

Role as Spouse Loses Out in Caregiving

Becoming the caregiver instead of the partner can put a strain on the relationship. Many spouses feel as though they have lost their best friend and face a stranger every day. Learning how to navigate a new role as a spouse can be difficult.

Not only does a spousal caregiver feel strain but also loneliness, even in the presence of their partner. It is not about being alone but losing the closeness that once was there when you were together.

Many caregivers report that their grief is like mourning for a lost way of life.

Spouses who honor the ‘in sickness and in health’ agreement they made find that they begin sacrificing their own identity when caregiving. Many spouses find they have to give up jobs, financial security and support from their personal network when they are caregivers.

Social isolation for both partners is common.

Many spousal caregivers feel a sense of responsibility for caring for their partner. They only want to do what is right and what their partner would do for them if the roles were reversed. There is a great deal of satisfaction knowing that you have done all that you can for your spouse.

Coping as a Caregiving Spouse

Even though you are a caregiver, you still need to care for yourself. Here are a few strategies that might help you cope if you are a spousal caregiver.

1. Enlist the help of family and friends for tasks that need to be done and can be done by anyone, such as lawn cutting or grocery shopping. This will give you time to be a spouse instead of a caregiver, talk with your partner and spend quality time together.
2. Keep a list of chores that need attention at the ready for anytime someone says ‘let me know what I can do to help’. No need to consider, just pull out the list and give them a job. Don’t be afraid to give your spouse tasks around the house for which they are capable of completing. It will give them a sense of purpose, keep them from boredom leading to poor behavior and allow you to attend to other things too.
3. Hire someone to help do more personal chores, such as bathing, if possible so that you can remain in the role of spouse and friend and not care taker.
4. Schedule time in your day for you. Get a medical checkup, get your hair done, have lunch with a friend or read a chapter of your favorite book. It doesn’t have to be more than an hour but everything else that is non-emergent will wait. You need to recharge your caregiving batteries.
5. Seek respite time from organizations that provide this service. Perhaps you need a weekend to visit grandkids or friends once in a while. There are programs which can fill in for you so that you can take a quick break. You could also send your spouse to the senior center for a few hours can give you much needed time to take care of things including yourself.
6. Connect with people in your situation. Join a local support group in person or try an online community. You will be able to vent your feelings, get advice and learn about the disease process so that you can better cope.

Asking for Help is Not Weakness!

One survey reported that, compared to family caregivers who were not spouses, more than half (58%) of spousal caregivers had no outside help from family, friends or paid caregivers.

Yikes!

Unfortunately, spousal caregivers seem to tell others that they are doing fine. It is their duty, after all.

Most find the tasks of caregiving slowly overwhelm them as they seem to add up over time, instead of starting out being too much. The tasks seem to pile up before most even realize that they are doing so much and become burned out.

It is important to your ability to continue providing care for your partner that you care for yourself. We hope that you will accept and even request help. Take time out for yourself. Join a support group or find some way to express your emotions.

You don’t have to be alone on this journey!