Shibani Ganguly, 50 is the sole caregiver for her mother, who has Alzheimer’s as a condition. She shares her experiences of a caregiver and how she has learnt the ropes on the job.
When was he/she diagnosed and what were the early symptoms?
In the year 2008 when she was 70. The early symptoms were forgetfulness, repetitive talking and temper tantrums.
Is there a history of Alzheimer’s in the family?
No, at least it has not been diagnosed.
What is the present condition?
She is rapidly losing her memory and perception. Inspite of staying at her own house with her own family, she is increasingly being guided by a false belief that she stays elsewhere and her daughters having the same name as my sister and me are also there. Her own mother, who has been dead for a while, is also living with her, she feels.
Please describe your experience of managing the patient.
She is very difficult to manage. A lot of patience is required to handle her and often even different techniques need to be applied. Work therapy which can keep her engaged sometimes works. But constant supervision is also required when she is engaged in some work or activity.
Is there a stigma attached to this condition? If so, how did you deal with it?
I have not really come across any stigma. But I have had to face a lot of curious questions from people around us.
What were some of the challenges you faced and what is your advice to caregivers who face similar challenges?
I had to leave my job as my mother was averse to staying with any attendant. As she is now completely dependent on me, I had to curtail many of my personal needs.
Patience, time management, skill and personal health care are very essential for caregivers. One needs to develop all these to be a good and dependable caregiver.
Since you were not a trained person yourself, how did you manage?
I read books and articles on this condition and also took advice from both doctors and organisations like ARDSI.
Have you learnt anything in being a caregiver that you wish you knew before?
It is basically practical knowledge which one learns from being on the job. The situation and the changes in thecondition of the person are the best teachers.
How has this been a learning process and what changes have you had to make to your lifestyle because of this?
I am still experiencing new problems as my mother seems to be developing new symptoms with the passage of time. I am applying new methods for solving the issues, basically by a trial and error formula. There is no standard rule for this kind of caregiving and one has to adjust and learn as the situation unfolds.
I have had to reschedule my routine completely, according to her convenience. Much as I enjoyed travelling, I cannot travel even for a few days by leaving her behind. I have also had to leave my job which also was important for me.
Has it been difficult emotionally to cope with your condition?
Yes, very much. It is painful to see my mother changing from a sound personality to her pitiable present condition.
How much support did you get from your family and friends?
I am sorry to say this, but I did not get any support from others, except from my sister.
What is the hardest part of being a caregiver?
The hardest part is that you know that you have to put in your best effort without expecting any progress and improvement. You know the outcome for a condition like this, but you have to still carry on.
How do you take a break and recharge yourself?
When she is calm for a while, I read books or listen to music. This is how I recharge myself.
Personal narrative courtesy ARDSI Kolkata
