Being a caregiver to a stroke survivor is an essential role and one that is both challenging and rewarding. While many caregivers take on their responsibilities out of love and duty, you likely found yourself suddenly thrust into this new role with no warning, preparation or training. Thankfully, it is not too late to develop a plan to take care of both your loved one and yourself.
Understanding the Role of a Stroke Caregiver
It is never too early to start preparing for your caregiving role. In the first days and weeks after a stroke, assess the possible needs of the stroke survivor and whether you can reasonably meet those needs.
- Become educated about stroke and your loved one’s condition. Talk with doctors and healthcare team members about stroke, stroke recovery, and stroke rehabilitation. Find out all you can about the prognosis and what the stroke recovery stages will likely look like. Understanding what lies ahead will help you prepare for the needs of the stroke survivor.
- Be a participant. Get involved in the rehabilitation process. Attend therapy sessions and talk with the therapists. Develop a clear understanding of your caregiver role. Offer support as needed but allow the stroke survivor to do things on their own and develop new skills. Stepping in to do too much can be detrimental to the rehabilitation process.
- Talk with the rehabilitation team about the stroke survivor’s abilities and needs. Developing a clear understanding of your role will help you plan for discharge. Will your loved one require help with bathing, medication management and finances? Will they be able to return home and, if so, can you commit to the care they’ll need? Once you have a clear vision of what is needed, you can more easily determine whether you can meet these obligations or require outside help.
- Assess equipment needs. If your loved one plans to return home, find out what equipment will be needed and ask for training to learn to use it properly. Ask before buying equipment. Some items may be provided, and others may not be recommended. It is best to ask for help before making decisions. If additional equipment is needed for a short time, is it available for rental rather than purchase? If you are at a rehabilitation hospital, ask your case manager if they can conduct a home safety assessment to see what is best for your loved one and your home environment.
- Identify resources within your community. Talk with a social worker or case manager. If outside help is needed, they can provide information on what is available and options for covering the cost.
- Practice patience. The journey back from stoke is a long one and there will be many bumps along the way. Celebrate the small victories and try to not be discouraged by setbacks.
Challenges Stroke Caregiver Face
In addition to providing the needed physical care, it is important to evaluate the changes in your life and relationship. Depending on the type and severity of the stroke, your loved one may have movement deficits and communication problems. There may also be personality changes after stroke. These challenges may force you to take on new responsibilities and alter your relationship. Some issues caregivers commonly face:
- Changes in previous roles. Whether you are caring for a parent, spouse or other family member, be prepared for roles to shift. Instead of a partner or child, you may find yourself carrying the burden of care much like a parent. Your loved one may require help with personal needs like toileting and bathing. With this comes feelings of embarrassment and awkwardness. Remember the stroke survivor is also dealing with these changes. Be respectful and try to include them in as many decisions as possible. And remember, it is still the person you know and love.
- Personality changes. You may notice your easy-going spouse now seems angry and demanding or your normally upbeat parent appears sad and withdrawn. These personality changes are due to damage to the brain caused by the stroke. Over time, the changes fade, and the stroke survivors may become more like their old self. Recognize that it’s normal for these changes to make you feel different about your loved one. Talk about your feelings with a trusted friend or member of the healthcare team.
- Finances. This may not be the first thing you think about but, unfortunately, finances are a reality. Maybe your spouse managed the household finances prior to a stroke, or perhaps you find yourself juggling your parents’ financial responsibilities with little to no information about their assets or obligations. If your loved one has the mental capacity to make decisions, they can give you power of attorney. If you don’t have prior measures in place for this type of situation, talk with an attorney about your options.
- Medication management. After a stroke, new medications may be added, and memory or functional problems may make it difficult for your loved one to manage their own medications. One solution is a pill organizer. Filling a daily or weekly organizer is one way to keep track of medications. Available at most pharmacies, some organizers have space for daytime and evening medications. Easy to open options are also available.
- Juggling a fulltime job and caregiving. There are even more challenges if you are both a caregiver and an employee. Talk with your employer or human resources representative about options and benefits available to you. Some companies offer flexible hours, work-from-home options or even caregiver leave. Eligible employees may also qualify for FMLA or Family Medical Leave. To learn more, visit the U.S. Department of Labor’s FMLA guide.
- A need for extra help. Providing care is a big job for anyone, and juggling your own life and responsibilities in addition to caregiving is bound to result in scheduling and time conflicts. Whether you need an hour away for an appointment, a few days of vacation or just relief from a daily chore, it is important to have a back-up plan in place. In addition to help from friends and other family members, in some areas you may have access to community resources such as adult day care, meal programs like Meals on Wheels, and home health care. Respite care provides a break for a few hours to a few days. Some assisted living facilities and hospitals offer respite care programs or it might be possible to contract with an individual to provide short-term, in-home care.
Tips for Caregivers
As a caregiver, it may feel impossible to focus on anything other than those obligations, but neglecting your own mental and physical health isn’t helpful to anyone. Sometimes even small breaks can provide a big boost. Look for ways to be good to yourself, including:
- Accepting help. When someone offers help, take it. Having someone sit with mom or run to the pharmacy might be the boost you need. Most people are happy to lend a hand if they know what to do. Maybe a fellow garden club member would be willing to weed the flower bed or the neighborhood baker wouldn’t mind dropping off a loaf of freshly baked bread. Be gracious and grateful but say yes.
- Ditch the guilt. Caregiver guilt is real, but don’t be afraid to tell your loved one you need a little “me time.” Sometimes stepping away for even a short time can help you recharge. Your loved one may prefer having you there to care for them, but at times that may not be possible. Be honest and move forward with your plans guilt-free.
- Take a few minutes each day to pray or meditate. Studies show numerous benefits of regular prayer or meditation, including lower blood pressure, reduced inflammation and pain, improved sleep and better coping skills.
- Seek support. Ask your healthcare team about stroke caregiver support groups in your area or search for online support groups. Talking with others in a similar situation can help you feel less alone, provide a way to share information, and allow you to talk about your feelings.
- Remember to laugh. Laughter not only relieves tension, but it also increases oxygen intake, releases endorphins (those “feel good” chemicals secreted in response to pleasurable activities), aids in muscle relaxation and reduces stress. Laughter can help you cope, and it can also elevate mood for both you and your loved one. Finding joy in life can make it easier to manage the challenges you face.
The content of this site is for informational purposes only and should not be taken as professional medical advice. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding any medical conditions or treatments.
