February 7, 2014

By:  Elaine K Sanchez

My dad was as healthy and robust as any 75-year-old man on the planet until the morning he suffered a debilitating stroke.  The following day he was diagnosed with prostate cancer.

My mother had two choices.  She could sell homesteaded farm ground to pay for his care in a nursing home, or she could care for him at home.  She soon discovered that caring for a stroke victim at home came with a lot of challenges.  The physical aspect of caring for Dad was dreary, demanding and sometimes downright disgusting.  But as difficult as that was, it was easier than coping with the emotional stress she experienced as a result of the changes in his personality and behavior.

There were times when she would catch a glimpse of the man he had been before the stroke, but quite often she felt like she had already lost him.  In one letter she wrote to me she said, “I think when a person has a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick. I have said many times that my husband died on October 30, 1993. We just haven’t gotten around to burying him yet.”

I believe when Mom wrote that letter, she was experiencing Preparatory Grief, which is the process we go through when we are losing someone gradually over an extended period of time. Preparatory Grief is different from the grief we experience when a loved one dies, in that it requires constant adjustments to ongoing changes and losses. Mom didn’t have a name for what she was feeling, but she was fully aware that she desperately missed the man my father had been before his stroke. She was grieving the relationship they once had and would never have again. She was grieving the life she had expected to be sharing with him at that point in their marriage, and she was grieving the losses she knew were still ahead.

There is nothing that will make taking care of a stroke patient at home easy, but there are things you can do to help reduce the stress.

1.      Separate the person from the behavior:  It’s not unusual for stroke survivors to experience changes in personality and behavior.  Someone who’s been active and self-reliant his entire life may become needy and lazy.  Someone who was always cheerful and optimistic can become moody, stubborn and even combative. If you are witnessing untypical and upsetting personality changes, talk to the doctor. Your loved one could be experiencing depression or pain. Medication could help.  If the damage is untreatable or irreversible, try placing the blame on the stroke rather than on your loved one.  It may help avoid conflicts and save a lot of emotional energy.

2.      Meet your loved one where he or she is right now. Dorothy Tucker, a nurse who worked in nursing homes and on Alzheimer’s units for 30 years told me she thought the main difference between family caregivers and professional caregivers is that professional caregivers don’t grieve the loss of who their patients used to be. She said, “I never felt sad about how a resident had changed. I never mourned who they had been 10 or 15 years earlier. I just loved them for who they were when I was with them.”  Accepting a “new normal” is hard, but stepping into the moment may be easier than trying to hang on to the past.    

3.      Focus on a happy memory. Think about a special event or moment you shared with your care receiver before the stroke.  Try to recapture the positive feelings you experienced in that moment. And then when you are feeling exceptionally angry, upset, or sad, pull that memory out and focus on replacing your current negative mental energy with the positive feelings you recall from that particular event.

4.      Join a support group. People who have never cared for a stroke patient cannot possibly understand the physical demands or the emotional stress involved. Joining a caregiver support group can provide you with information and education as well as a safe place to express all your emotions. You will benefit from hearing other people’s stories and you will help others when you share your experiences.  You will also learn that having negative and angry feelings doesn’t make you a bad person. Giving yourself permission to be human can relieve a lot of pressure.

5.      Choose the appropriate level of care.  Stroke survivors experience a wide range of physical, mental and emotional changes. It’s important for the caregiver to assess the extent of the damage and then choose an appropriate level of care.

•     Nursing home care may be the best option for stroke patients who are not able to contribute to their own care. 

•     Home Health care after a stroke can be a viable option if a person needs regular medical attention but still has reasonable level of mobility and cognitive abilities.

•     Physical and Occupational Therapy can make a huge difference in a stroke patient’s recovery.  My dad wouldn’t do exercises when my mother asked him to, but he was willing to try anything his attractive red-headed therapist asked him to do. (And he actually improved as a result.)

•     In-home care seems to be the best option for stroke patients who have mild to moderate impairments, in that familiar surroundings provide a person with a stronger sense of normalcy. As an added benefit of this sort of post stroke home care, being in a safe, non-threatening environment could help your loved one maintain a positive attitude and recover some skills more quickly.

•     Respite care can be a welcome relief for the caregiver as well as the stroke patient. Even a few hours a couple times a week can make a huge difference for both of you. Enroll your loved one in an adult day care program.  Hire a home care worker to stay in your residence and provide stroke care at home so you can go to lunch with a friend or take a mini-vacation to recharge your batteries. Socialization is critical, and the cost of respite care is minuscule when measured against the benefits. 

When someone we love suffers a stroke, we grieve the loss of their physical and cognitive abilities. We grieve the loss of the life we shared before the stroke.  Our hearts break a thousand different ways, and it can be a long, long journey.  That’s why it’s so important to accept the fact that self-care is NOT selfish. By taking care of your body and paying attention to your own mental, emotional and spiritual needs you will be in a better position to help your loved one now, and eventually create a new life for yourself after caregiving.

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Elaine K Sanchez is an author, caregiver speaker and co-founder of CaregiverHelp.com, a video-based caregiver support program.  She write the Caregiver Help Word of the Day, and is a regular contributor to Griswold Home Care’s CaringTimes Blog.