Dr. Val FarmerDr.Val
Rural Mental Health & Family Relationships

What We Are Learning About Family Caregiving

May 17, 2004

Caring for an aging parent can be an overwhelming responsibility. We know. My wife’s father Nick, age 92, has been in our home for more than a year. We are still learning about the challenges of caregiving. Some days can settle into a fairly boring routine. Other days have their share of more stressful challenges. The picture changes, usually not for the better.

Here are some things we’ve learned so far about family caregiving.

1. Meeting the physical and medical needs of an aging parent. There is a reality here that needs to be accepted. This is not pleasant - at least a lot of it isn’t. It is a bumpy ride. Facing that reality head on is important. Knowledge dispels fear and makes the unknown known.

We needed to learn as much as we can about Nick’s medical conditions and work in close collaboration with his physicians, physical therapist and dentist. Medications can make a big difference. Some of them have caused problems. Others have been a Godsend. An occupational therapist evaluated our home for safety in daily living.

2. Getting help. There are programs and services out there that can be a huge assistance. We have appreciated the ideas and help from our state agency personnel about resources available to us. Home health aides have given us respite care so we can attend to other family duties. Church friends have supplemented our care at times where we couldn’t cover it.

Adult daycare has met Nick’s emotional needs. Participation keeps Nick busy and involved. It has been his best antidepressant. It has relieved him of time he was using to obsess about finances, worries and losses. Darlene needs to get out and take care of errands without molasses-slow Nick at her side. Our high school son’s activities are also a priority.

Darlene has become an educated caregiver. She has had to learn hands-on techniques, such as transferring safely, proper skin care, and lifting properly. There is a lot to learn about caregiving. The staff at the local adult daycare offer caregiving tips as problems arise.

Darlene’s brother and his wife provide care during the summer. A daughter came to be with Nick while we attended our son’s college graduation. Grandchildren have invited Nick into their homes at other times of the year so we could have needed breaks. Having family members show an interest in Nick by sending e-mails and letters, making phone calls, and caring about our situation is helpful.

3. Taking time for self. Caregiving is stressful. Darlene has to keep busy and productive. That is who she is. She practices piano in the home. Music soothes her. She has done some major family history scrapbooks, studies Russian at home and has a Russian friend visit for conversational Russian. Gardening is something she and Nick share in common.

Despite all that, days can still can be boring and lonely. There is a huge sacrifice of lifestyle. Darlene is pinned down. Getaway trips and evenings out help hold on to normalcy. All caregivers need time away--it's good for the caregiver and the care recipient.

4. Getting emotional support. Support groups are a wonderful place to learn and vent. Other people have harder situations and they cope. They have wisdom to share.

My willingness to listen and take over at times helps lighten the burden. I need to take care of the caregiver. Darlene’s friends and regular contact with our adult children adds a layer of care and support to her life.

Sharing the responsibility within the family is important. Expectations need to be spelled out. Belatedly the primary caregiver finds out that everyone isn’t on the same page. Problems need to be worked out through family communication.

5. Having a good attitude. Each day can have its pleasures and special moments. There are pleasures and satisfactions connected with eldercare. Exercising, religious faith, a sense of humor, family duty for a loved one, and an eye for positive uplifts gives a greater perspective on why this is important.

Veteran caregivers talk a lot about learning and needing patience to get through this. Learning to adapt to Nick’s losses of personality, judgment and expressive ability, plus coping with his emotional distress, self-absorbed preoccupations, and physical needs has been hard.

One of Darlene’s hardest adjustments to make has been to shift from being a daughter with expectations for her father to be reasonable to that of a caregiver where she accepts his limitations. There is a balancing act to walk between showing respect for Nick’s choices and independence and the need to be firm and directive when he acts irrationally or "childish". The roles have been reversed - with emotional loss and added responsibility.

6. Planning ahead. There are limits to care in the home. Each family needs to decide at what point they can no longer give care or when their aging parent will be unsafe in their home. Bringing in home health aides may postpone the day when 24 hour care may be necessary.

We will cross that bridge when we come to it. A stroke or a fall could change everything. We don’t know how long this will last. It is a "one day at a time" proposition. How quickly one day has turned into a year.

This has been our experience so far. We will keep you updated.