On the Journey Home….The Gift

The fall of 2010 brought me a gift and blessing I will never forget, being the primary caregiver for my mom through the final journey of her life. At the time, I did not always view my experience as a gift. The life lessons I learned made me a better person and have given me a perspective on life, grieving and death that have forever changed me. My mother’s gift was that of her total self, allowing me to experience with her the pain, grief, fear and vulnerability that became hers during her final journey as she struggled to maintain her dignity, independence and health. I hope my story will help other caregivers in their journey.

The Journey

In November 2010 mom had to leave her home and move to a care suite in assisted living. Since spring, her body continued to betray her. Loss of mobility, falls and hospitalizations for staph infection, pneumonia and blood clots in her lungs. The move was very traumatic for all of us. I thought assisted living would bring a relief for everyone. I soon realized that was not the case. Mom needed me there to support her emotionally. Initially, I did not see her fear of being alone and her recognition that here is where she would die.

Mom recognized, as did I, her cognitive capacity had also changed. The simplest things she enjoyed like using the TV remote or talking on the phone became a struggle that frustrated her. Bouts of temporary dementia initiated by fear embarrassed her. A month before she died I realized she was dying. Although still active, she had less interest in eating or conversation and would sometimes simply sit and stare off in the distance. Her clothes had a different smell when I washed them. I knew we were close to the end of her journey.

Mom willingly entered hospice two weeks before she died. Our conversation with hospice was amazingly upbeat for mom. She knew exactly what she did and did not want. We had talked about dying and death, but the meeting seemed to give her peace. Death was out in the open. The fears of the dying process seemed diminished with the assurance we were there to assist her through her final journey, peacefully and free of pain. Mom often said she did not fear death, but rather the process. Would it hurt? Would she know dad when she got to heaven? Would he look the same as when he died, how would she recognize him? Mom died while my brother held her and I stroked her face.

The Gift

The experience of caregiver taught me many lessons. I had been a Crisis Counselor and taught a class in Disaster Management for 10 years. I knew about grief and death, more importantly I knew about stress. I also knew it would be difficult, but I did not realize to what extent. If I had not recognized the myriad of emotions and physical implications of my stress, the journey would have been more difficult for both of us. Being a caregiver for someone who is terminally ill is a grieving process for both of you. You are grieving the loss of who they were and what is to come…death.

The emotions of caregivers mirror those of the grieving process; denial, anger, acceptance, complacency/depression, guilt/bargaining. I went through the entire gamut of emotions back and forth from day to day until I recognized she had begun the dying process. I then realized the gift she was giving me, her total self. Accepting her dying enabled me to walk the journey with her. The last month we talked a lot about dying which was a console for both of us.

As a caregiver, the best gift you can give your loved one is to take care of yourself to the best of your ability.

Taking Care of Yourself

Get a “buddy”! (friend, family member or professional). Someone you trust who won’t judge you and who is a good listener. Someone with whom you can be yourself. You are reacting “normally” to an abnormal situation! It’s not normal to have to spend all your energy taking care of a loved one. It is sometimes part of life, but not normal.

Know yourself and your body. Be aware of signs of stress, illness or feeling out of control. Don’t set unrealistic expectations. You are only one person. Be loving, but set boundaries with your loved one regarding their expectations. Giving up your life will not make them well! Be realistic. Recognize and be honest with yourself and your loved one about their situation. Talk honestly and openly with your loved one, it will bring you closer. Most people who are dying want to talk about dying, the process and their fears. (Both of you have a fear of your loved one dying and are grieving.)

Ask for help, for yourself and your loved one. There are many resources to help with caregiving including home health care, hospice, the medical community, social workers, churches and friends.

Keep as normal a schedule. Eat and sleep at normal times. Schedule time EVERYDAY for yourself to be quiet. Meditate, pray, cry or simply be quiet to gather your thoughts and energy.

Find your TRUE friends. Assess your friends and acquaintances, avoid those with negative energy. Your TRUE friends will understand and support you even when you are irritable.

Kris Pearson is a Realtor RSA Senior Advisor with Keller Williams. Ms. Pearson can be reached at 612-709-1304 or by email at [email protected]. She is available to give talks on caregiving and caregiver stress.