Guest Blog: The Special Needs of Family Caregivers of Stroke Survivors

By Kristen L. Mauk, PhD, DNP, RN, GNP-BC

Caring for a family member who has survived a stroke can be intimidating. Stroke can cause a myriad of problems from difficulties with walking and talking to bowel and bladder incontinence. Being a caregiver for someone who needs help with activities of daily living can cause a high level of stress over time. 

Rosemarie King, an expert in family caregiving of stroke survivors, found that there were specific areas  reported by caregivers as causing stress. These included interpersonal relationship issues, sustaining one’s self and family, and how well the stroke survivor is functioning. Stress can come from others not understanding your situation or from lack of support from family members and friends. 

Caregivers of stroke survivors are often married daughters who are balancing their own family responsibilities with the new role of caregiver. If there is a great deal of uncertainty about the survivor’s future progress and outcomes, this can add additional stress to the caregiver. Depression is reported in a majority of caregivers of stroke survivors. All of these factors lead to most family caregivers of stroke survivors experiencing what is known as caregiver burden or caregiver role strain (CRS).

You are more likely to have CRS if you have had issues coping with stress in the past, are caring for a person with more serious and complicated needs, and/or you haven’t had the opportunity to learn about stroke and its aftermath. This type of stress can lead to problems such as ineffective coping, relationship issues, and even your own health problems.

Some key signs that you are experiencing CRS include:

• Lack of time to meet your own personal needs.
• Increased emotional ups and downs.
• Withdrawing from your previous social life.
• Changes in leisure activities.
• Increased illnesses or health problems.

What can you do if you are experiencing caregiver role strain? First, recognize that it is normal to feel stress as you learn the role of caregiver. Feelings of stress and being overwhelmed may fluctuate and continue over the entire first year in this new role. You are not alone in these feelings. It takes time to adapt and adjust. You will develop unique ways to be more successful as a caregiver. 

Here are some additional areas to consider, with tips for avoiding CRS.

Education

• Learn as much as you can about stroke so you can understand what the stroke survivor is going through. The American Stroke Association is an especially helpful resource.

Support

• Find a stroke support group in your area.
• Recruit family members to help with the care or financial responsibilities.
• Let people in your faith community know about your particular needs and let them help.
• Hire professional caregivers to help ease the care burden.

Have Realistic Expectations

• While your loved one may not fully recover from stroke, and your life has changed, be willing to accept this.
• Set reasonable boundaries for what you can and can’t do as a caregiver.
• Realize that adjustment will take time for everyone.
• Remember that even small gains can be meaningful to the person who has survived a stroke.
• Consider yourself an essential part of your loved one’s recovery and adjustment to a new life after stroke.

Self-Care

• Allow yourself time alone, time to rest, time to be refreshed.
• Don’t neglect your own health, and let your primary care provider know about your caregiving situation.
• Consider hiring a reliable person to provide care while you run errands, go shopping, or take a vacation.
• If you feel you need help coping, seek professional guidance or counseling early in the process.

You can visit Dr. Mauk’s Boomer Blog at www.drmauksboomerblog.com for more educational resources.