As I sit in my family room, looking out at the smokey, orange skies of the San Francisco Bay Area, I can’t help but think about my child with special needs.
It has been 8 months since we have been stuck at home due to COVID. This morning, September 9, 2020, at 11 am, when I woke up, it looked like dawn. When I drew open my bedroom curtains, I saw the sky in bright orange color. I had never seen anything like it before.
I quickly looked at the weather on Google it said that the clouds covered the smoke which traveled during the night and will eventually open up the skies around 5 pm. I then looked up the weather in Cloverdale, CA. It was 81 degrees with clear blue skies! I was comforted that my daughter, Siri would be moving there soon, in early 2021.
As a parent of an Autistic child, I worry about her future. 180,000 adults live at home with their parents. Siri, a 27-year-old young lady lives with us, her parents, and her two younger brothers at home.
About 90 miles away from San Francisco is Cloverdale, in a small town in the beautiful Sonoma County, rests Clearwater Ranch. Their mission is to provide life-long housing and community that empowers developmentally disabled adults to live their lives to the fullest potential with dignity, purpose, and joy. What a comforting feeling.
Our family along with a few other like-minded families are working actively, partnering with a non-profit, Living Unlimited, to design, develop and implement a life-long housing solution for our loved ones with intellectual and developmental disabilities.
So as the skies burn, I think about the future. The future of my daughter, of disabled people, of seniors, and of myself. I have committed my time and my life to securing my children’s future. Have you?
Swathi Chettipally is a devoted mother and an Autism advocate. Find more about her work with Siri on Pinterest, Instagram, and Youtube.
Are you caring for someone – perhaps an elder – who is seriously ill? Do you look after a disabled son or daughter? Perhaps you’re in the ‘sandwich generation,’ raising children while you worry about and care for a parent? If you answered yes, you’re already in the Caregiver Club. If you said no, consider changing your answer to no, not yet. To quote Rosalynn Carter, President of the Rosalynn Carter Institute for Caregiving, and former First Lady of the US:
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
The Caregiver Crisis in the United States is rapidly getting worse. Each day another child, spouse, relative, or friend is faced with providing care for someone who can no longer look after themselves because of increased frailty, illness, or trauma. They become responsible for that individual’s physical, psychological, and social needs. Experts warn of the increasing strain this trend will place on society in the coming decades. About 43 million friends or family members in the US are primary caregivers today for adults and children with disabilities, or someone recovering from surgeries and illnesses, or coping with Alzheimer’s and other chronic diseases. Many are themselves aging. Caregivers – primarily women – provide 37 billion hours of unpaid care annually – $500 billion in economic value, according to one estimate. 10,000 baby boomers turn 65 each day. The growing population of people who will need 24-hour personal care has been likened to an approaching “slow-moving tsunami that has no end.”
Caring for a loved one can be enriching and rewarding; the experience creates opportunities for personal growth. Caregiving brings out the best in us; we approach it with love and compassion and are devoted and determined to do our best. However, long-term care demands sustained attention and is physically exhausting and emotionally draining for both the giver and receiver of care. Relationships are affected. Significant changes need to be made in daily lives to adapt to new realities. Caregivers are frequently unable to pursue normal relationships or lead normal lives. Life can become stifling with increased stress and anxiety. Caregivers themselves need support, without which they face burnout or become ill. Caregivers in the South Asian community additionally deal with unique social and cultural issues that need to be addressed in a targeted and sensitive way, making the problem more challenging.
As we grow older, we all want to “age in place;” live safely, comfortably and independently in our own homes and community, in our comfortable environments. The reality is that we will lose this ability at some point. Many of us also worry if another: an aging parent, relative, or friend can continue to age in place. We worry about the day when their ability to manage their own lives independently begins to diminish, and about what would happen then. The question is not if this will happen, but when. These concerns are often triggered by changes we observe in their behavior.
Gerontologists, geriatricians and other aging experts offer excellent advice on how to prepare for such an eventuality – advice we should heed. The first consideration is the elder’s ability to independently care for him- or herself – to carry out what are known as the Activities of Daily Living (ADLs). Can they feed themselves? Move about on their own, get in and out of a bed or chair? Bathe or shower? Use the toilet? Dress and groom themselves? Next, evaluate other activities necessary for independent functioning, known as Instrumental Activities of Daily Living (IADLs). These include remembering things, cooking and preparing meals, cleaning and maintaining the home, shopping and buying necessities, running errands, managing money and paying bills, speaking or communicating on the phone, and correctly taking prescribed medications. If any of these present challenges for your loved one, then he or she needs some kind of support and/or care.
When a concern is identified, experts recommend a family meeting with everyone involved, including the elder, to have open and honest discussions with the goal of getting the best possible care for the elder. Discuss his or her requirements and anticipate future needs. Consider all the available options and constraining factors to meet those needs. These discussions should include financial and estate plans, care planning, and Advance Directives. The costs of keeping the elder at home together with professional assistance if required, have to be weighed against the financial and emotional cost of moving him or her into an assisted-living facility. Perhaps a phased approach could be implemented. If dementia or serious illness are considerations, medical professionals should be consulted and their advice factored into the decision making. The more prepared we are, the more advance planning we do, the less stressful and more rewarding caregiving will be.
If you answered “yes” to my questions above, you’ve already experienced the challenges of caregiving, and I have an important message for you. It’s critical to start with self-care and self-compassion, otherwise, you will burn out. Linda Abbit provides excellent advice in her recent book The Conscious Caregiver. As you take on these roles and responsibilities, she says, it is important that you understand, recognize, and address your emotions. At various times you will feel guilt, resentment, fear, grief, depression, anger, or embarrassment. It is okay if you do. Address your feelings consciously, and discuss them. Be kind to yourself. Make time daily for self-care. Abbit recommends making a happiness list. Put down all the things you like, and make time to enjoy them. Meditate. Adopt breathing practices. Listen to music. Eat healthy and sleep well. Stay active and get exercise. Commune with nature. Practice gratitude. Pamper and reward yourself occasionally. It’s okay to vent; bottling up your emotions will affect your health. It is essential that you accept help – even seek it – from others. You cannot do it all. Delegate to others what and when you can. Be an advocate for both yourself and your loved one. Learn to let go of what you cannot control. By first taking care of yourself, you will be a better caregiver.
The tsunami is coming! Will you be ready?
Sukham Blog – This is a monthly columnfocused on health and wellbeing.
Mukund Acharya is a co-founder ofSukham,an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community.