In this guest post, myALZteam member Tiffany Gustafson shares about the emotional and relational changes she faces as the primary caregiver for her father with Alzheimer’s. myALZteam launched in December 2015 and now has more than 12,000 members. It is the online social network and online support group for those caring for a loved one with Alzheimer’s.
I am a caregiver. I am a daughter and only child of a 75-year-old man who is battling Alzheimer’s.
Alzheimer’s is the only cause of death that ranks in the top 10 diseases in the United States which cannot be prevented, cured, or even slowed.
In 2014, family members provided almost 18 billion hours of unpaid care to their loved ones. While there are plenty of resources out there to help you ease the tension when one has to revoke driving privileges from their loved one or how prepare your home to provide a safe environment, there is very little emphasis placed on the relationship shift that happens due to this ugly disease.
All of a sudden the relationship you once had with that loved one is gone forever. You may experience a glimpse of it here or there that leave you hopeful but soon you come back to reality as you realize your relationship with your loved one and this disease cannot be fixed. There is no work that can be done to improve it, you have to learn to develop a new relationship and that takes time. Being a caregiver, you do not have a lot of spare time to work on new things.
Caregivers themselves experience an emotional rollercoaster. There is anger, resentment and loneliness. There is a grief that accompanies the loss of shared stories, experiences and activities. There is also anxiety. Who will care for your needs while you are aiding for someone else? What is tomorrow going to be like?
For me, all of a sudden the man that raised me had no idea who I was. He now refers to me as his brother. One day I brought out a family photo album to bring back old memories and I told him I am his daughter. He became extremely agitated and began calling me a liar and saying I was “F’ing crazy.” And for those with experience with people with Alzheimer’s, once they are fixed on a subject they don’t let it go. I was heartbroken. I had always been daddy’s little girl. We used to fish together, go boating, play catch and take our dog out for walks. We would have game nights and dance to 50’s Dance Party when it was on TV. Eventually I was able to distract him and move on to another subject. And now those memories are moments that I share only with myself.
I won’t discount who my father is. He is still a wonderful man, jovial most of the time, who walks around urging everyone to keep smiling. But on bad days, when things are out of routine, when he tries to do something himself or remember something, he gets frustrated. Those are bad days. It breaks my heart. And I am the one who is there day in and day out to experience it.
This new limit in our ability to communicate deeply is the greatest loss in our father-daughter relationship. Simple conversations are now unnecessarily complex.
Almost everything I read advises caregivers not to get upset. But every day, dealing with loss after loss whether they misplaced your toothbrush, grabbed your car keys or took apart a project you are working on, we are encouraged to keep our cool so we don’t upset them. This can make a caregiver unravel.
Until recently I felt disruption with in me. After caring for my mom who lost her battle with cancer and going right into caring for my father, I felt a huge void in my life. I had difficulty remembering things, I didn’t know if I was coming or going, I was stressed, I had trouble concentrating, and I averaged less than two hours of sleep at night. My work suffered. My relationships suffered. I felt alone and misunderstood.
I do realize I am more fortunate than most. I have been able to write for two different ALZ support organizations. I can share my experiences, lessons learned and emotions with others so they can also not feel so alone. I developed a friendship and working relationship with the author of Learning to Speak Alzheimer’s. I began to attract clients who have been through a similar situation. We have formed a safe community to openly talk about issues.
All of this has given me the strength, tools, and resources to make sure that my dad is getting the best care. I now feel empowered to care for my father even though it is not easy nor fair.
This disease is ugly. I thought cancer was bad, and believe me I still hate cancer, but watching someone be physically alive and healthy with no recollection of the life they lived for the past forty years is dreadful. I will continue to share my story and experiences to bring more awareness to the disease, to help caretakers get through this process.
Stay tuned…WE GOT THIS!
Watch for Tiffany’s next post about self-care tips for Alzheimer’s caregivers.
This guest post was written by myALZteam member Tiffany Gustafson. Tiffany is a caregiver for the second time in her life. She cared for her mother with breast cancer before she became the primary caregiver to her father who has Alzheimer’s. She lives in the San Francisco Bay Area and runs her own business, Motivated Fitness. She writes to encourage fellow adults caring for a parent with Alzheimer’s.