I know of a few couples with an autistic or down syndrome kid. Someone told me that a young couple was having a very hard time with their second son who is autistic. The son misbehaves and is very difficult to manage at times.
What I told him was regardless of whether we are caring for an autistic or down syndrome child, or an elderly person with Alzheimher’s…it is very similar. Even though their brain function is not the same as a normal adult, I find that they are extremely sensitive to the moods, stresses and feelings of their caregivers.
It is important to keep this in mind when we are caring for these individuals with special needs. If we are feeling stressed, overwhelmed, resentful or angry, they can pick up on your vibe.
Therefore, it is of paramount importance that as a caregiver, we take care of our emotional well-being and stress levels. If not, our vibes and non verbal cues gets picked up by the child or senior. It may cause their behavior to be hostile, rebellious, uncooperative and even aggressive.
My personal experience in being a caregiver for my mother
I know it firsthand when I become a caregiver for my mom. As I dive into this role head on without any prior experience and straight from corporate office, in the beginning I was feeling stressed and overwhelmed.
My mom would tend to move slowly and sometimes to get her ready for meals would require about 30 minutes of coaxing. Initially this made me impatient. I was rushing my mom for things and somehow the energy is transmitted to my mom. As the result, my mom, who have Alzheimer’s become more cranky and rebellious. She started to go against what I said and ignored me when she did not feel like speaking to me.
When she behaved like that, it added to my stress levels and then it showed in my speech and body language. And she reacted even more negatively. It became a vicious cycle.
After a while, I came to a new understanding about the situation after getting some valuable advice. I should never assume my mom was the same person as last time. I learned to fully accept that my mom is now a child and require love, nurturing and gentleness in caring for her. During this stage of her life, there is also an opportunity to give her the love and affection that she had been deprived all her life (my mom was sold by her mom to a servant’s family few months when she was born and grew up in poverty and physical abuse). When she could not fight back the abuse as a child, she would react very defensively as unpleasant encounter may stir up suppressed memories of her physical abuse.
I decided to accept it as an opportunity for me to strengthen my internal traits such as patience, endurance, compassion and gratitude. Eventually, caregiving no longer become a burden but a joy at times.
Hence, when we are involved in caregiving, either for a child or an elderly, we need to understand that if we feel burdened or resentment, they would sense our moods. In turn, it would make our caregiving task much more unpleasant and difficult that it has to be.
Through these 3.5 years caring for my mother, I find that personally I have changed for the better. Something that I strongly doubt any paid personal development or life coach could ever do. And my mom too, is now better mood overall due to picking up on more positive and nurturing vibes from me.
Caregiving is exhausting and is a thankless job. There is nothing glamorous about it. On most nights I am up a few times to clean up the room and bathroom of urine as she would have difficulty holding her urine. I would need to clean her up and wash her soiled pants (by hand).
Friends have advised why not let her be on adult pampers. My mom is diabetic and she has very thin skin due to her age. Wearing adult pampers would make her susceptible to sores despite the best care. And she tend to urine a lot at night where one diaper would not be enough. So it means that I would still need to be up anyway.
Also I wish for her to use her brain cells more and to be independent to be able to go to the toilet on her own for as long as possible. The only thing is I have to be willing to clean up after her which is now something I have gotten used. After I cleaned her up and guided her to her bed where she would then sit down to wear her pants. Sometimes she wears it wrongly, in which I would guide her to wear correctly. In the end, the peaceful look on her face as she quickly fell asleep and slept like a baby made everything totally worthwhile.
Perhaps it was what she felt too when she told me (before she had Alzheimer’s) that as a young mother, she struggled from exhaustion from insufficient sleep and having to work in shifts as a nurse when I was still a toddler. She had to take 2 buses to reach her workplace and often would stop by the wet market on the way back, hence carrying bundles of groceries and foodstuff. However, the moment she arrived home, no matter how tired she felt, one look at my toothless grin….she would feel her tiredness just melt away.