He looks confused. He can’t remember what I just told him a few minutes ago.
“Where are you going?” my father asks for the third time.
“I am taking the kids to their piano lesson,” I say, keeping my tone the same as if I am answering the question for the first time.
I know when I leave the house, he will wonder where we went. His needs are simple. I have to make sure he is safe, fed, has taken his meds, has access to his routine TV programs, gets to interact socially, and gets rest when he is tired. Most of those are familiar tasks for me. After all, I am a mom.
But, there is one big difference – caring for him draws out different emotions than those that I feel caring for my children. With raising a child, each day is a new one. The child grows, becomes more aware, says and does new things, and is a source of hope and optimism. It is easy to throw oneself into parenting and come up with creative ways to nurture and grow this precious individual.
“You are so blessed,” they say, “You are getting to take care of your dad.”
But, taking care of someone with dementia has few palpable rewards. My dad can not remember what I do for him. He does not see when I’m overwhelmed with fatigue or despair. The conversations we have are cyclical due to his short-term memory and can easily lead to frustration. He does not possess the mental faculties to handle complex topics. I have to be his memory bank and keep life simple for him.
Dementia describes a group of symptoms associated with a decline in memory, reasoning, or other thinking skills. As memory issues get worse, the patient is unable to manage daily chores that require memory of facts and reasoning based on facts.
I am at a juncture of life where I see the two contrasting ends of life alongside my own and both need me. One reminds me of human potential and other human frailty. Most of us sign up for the former role but the latter role is not for the faint-hearted. That role has compelled me to truly grow up. Putting the past aside, and being aware of the future that will, sooner rather than later, lead to decline – I am pushed to access qualities I’m not sure I possess but I must feign. They say life is a school of hard knocks. I have to add that life requires us to learn immense patience. I suppose one could choose to walk away from the less pleasurable duties that present themselves. But, then, one loses the chance to truly become an adult.
I have learned a few things in my journey in being a caregiver. Here are some practical tips for others in my situation.
Educate yourself – A rise in life expectancy has led to a prevalence of dementia/Alzheimers. According to the World Health Organization, worldwide, around 55 million people have dementia. According to Alzheimer’s Association, Alzheimer’s disease is the most common cause of dementia (dementia is an overall term for a particular group of symptoms such as difficulties with memory, language, problem-solving, and other thinking skills that affect a person’s ability to perform everyday activities). Look for reliable sources of information and educate yourself about how the condition manifests and how it is likely to progress.
Think about caregiving for your loved one as an exercise in building patience – One common symptom is repetitious questions and conversations. It took me time to get here, but I realize that there is no point in telling loved ones that they are repeating themselves. They are not aware of it. Being told that they are repeating themselves is likely going to hurt their feelings and is not going to prevent them from doing it in the future. Find a way to patiently listen and tactfully change the topic at an appropriate juncture.
Teach others how to treat your loved one – Through your words and actions, teach your immediate family, your extended family as well as strangers how to treat your loved one. For planned social occasions, try to let hosts/guests know ahead of time that your loved one has memory issues. Here is an excellent tip from a dementia counselor. She advised me to carry a small wallet-sized card with me that read, “The person with me has memory issues. Please be patient.” This comes in very handy in any place I have to deal with strangers – such as doctor’s offices and stores. I have found that invariably most people take heed and calibrate their interaction accordingly.
Tools – Try to find ways in which you can use tools to help. Here is an example of how a simple tool helped provide some relief in my situation. One issue that I dealt with for a long time was being asked numerous times about the day/date/month/year. I realized that my father was losing track of time and was feeling disoriented as a result. When I did a search on Amazon for a clock that displayed the day and date besides time with a large display screen, I was pleasantly surprised to find products specifically made for seniors that met the specifications I had in mind.
Take care of yourself – It is really important to find ways in which you stay healthy – both mentally and physically. Take time out to exercise. Find a confidant who is willing to listen to you vent about the situation. Try to retain a sense of humor. For instance, when my father misplaced his stool sample, my first reaction was that of horror. Over time, I learned to take such occurrences in my stride and even looked for humor. It helped me stay sane.
Look at the big picture – Today, it is our turn to give care. At some point, if we live long enough, we may need care. Hopefully, our children will be patient with us one day when we are dependent on them.
Shailaja Venkatsubramanyan has taught information systems at San Jose State. She volunteers with the Plant-Based Advocates of Los Gatos