Conversation with a Caregiver
Similarities and Differences
“Nathan” lives in the U.S. while he gets a Ph.D., but he was born and raised in Saudi Arabia and wants to return.
He is the oldest child of a well-to-do Saudi family and was his mother’s caregiver for many years. She had various illnesses and eventually died of Alzheimer’s at age 85.
Our Conversation
I asked Nathan several questions about his experience as he cared for her - particularly in the last years of her life.
What help did you have?
In some ways, Nathan was fortunate. A team of people helped him care for his mother: in-home help, nurses, and his sister. They fed her, helped her walk, and cared for her personal needs.
He said that finding nurses was challenging. Typically, people seeking qualified nursing help had to bring them to Saudi Arabia from other countries.
For the last six months of life, his mother was in the hospital, and a private nurse, Nathan, or his sister, stayed with her. He was her primary care provider and guardian - always advocating for her well-being.
There are few long-term care facilities in the country. After the last hospitalization, Nathan’s mother stabilized, and the staff wanted to send her home, but he refused. Instead, he gave the hospital a check every two weeks for her to remain there.
Before the final hospital stay, his mother hadn’t signed a DRN (do not resuscitate) form. Nathan insisted they accept his signature - as her guardian - because she had dementia and couldn’t sign for herself. Hospital administrators refused, but with the support of her doctor and his insistence, they finally agreed.
What did caregiving entail?
Nathan fed his mother, walked her to the bathroom, and put her to bed at night. It was as if she was a young child and he was the parent.
He also read to her, looked through picture albums, and shared memories - activities that entertained and soothed her.
Much of his caregiving entailed advocacy - fighting for her to receive the highest quality care and ensuring she was not alone.
What was the most challenging part?
Nathan said the most challenging part was losing the person.
What would have been helpful?
He would have liked someone to sit down with him and explain everything - what to expect, what would happen, and what to do.
What would he do differently?
He would be more prepared and educated about the disease.
What did he find helpful?
Nathan thought patience and forgiveness sustained him. He felt he would not have cared for his mother with patience had he not forgiven his parents for some earlier decisions.
He believes that you care for another out of love or duty. By forgiving his parents, he could care for his mom out of love, which gave him more patience and willingness.
How did he take care of himself?
Nathan felt his part-time job gave him a break from the situation. He lived at his house rather than at his mother’s - which gave him space.
The caretaking took place over several years. So, Nathan took a month’s break twice a year. His sister stayed with their mother while he traveled. She did not discuss their mother’s condition with him, so he could wholly refresh.
What did I learn?
Nathan’s situation was different than mine in many ways. He had a team to help with his mother’s care in the home. I was Dan’s sole provider, but services were available. He cared for his mother’s personal needs, fed her, and put her to bed. I never reached that point, although we were close before he moved to the memory care facility.
The emotional toll that caring for a loved one was similar - even though it was his mother and my husband - losing that precious person in bits and pieces was crushing. We both would like to have been better prepared and knowledgeable about the disease.
Like Nathan, I think we care for a loved one out of love or a sense of duty. For me, it was a combination of the two. Dan was my love and my partner. How could I not be there for him?
In the United States, we have a wealth of support facilities from which to choose. There were only two gerontologists at the time where he lived. And as Nathan mentioned, there were - and still are - few long-term care facilities.
In Saudi Arabia, women do most of the caregiving in the home. Generally speaking, caregivers think it is an honor and a duty to care for their parents, and they would not place their loved ones in an assisted living facility, even if it were an option.
After talking with Nathan, I am very thankful for the facilities and services we have in the United States.
If you want to contribute to my work, consider donating to the Alzheimer’s Association. This link takes you to their website. The choice is yours.
There are two things that strike me. One is the need to tell your family before Alzheimer's what you want and to put it in a living will. The other is you lose the person before death and that is where the living will is so important. I am putting up a post about Alzheimer's prevention tomorrow.
It's very powerful that Nathan talked about forgiveness and how it changed his ability to care for his Mom. I am going to meditate on this, dig deep to see what work I need to do on forgiveness. Thank you Janice for sharing this and thank you Nathan for your help by sharing your story.