Tabula Rasa – A caregiver’s plight!

Have you mashed the fruit?”

“Have you put put on the diaper?”

“I hope the milk is not warm.”

“Look! Today she is laughing.”

“She drank juice on her own today.”

“Do wash her doll. It’s rather dirty.”

This is our daily conversation but my husband and I are not discussing our little child but his mother. She is 85, helpless, bedridden and self-absorbed in her own world, cuddling a soft-doll all day. Although we take care of her from morning till night, she does not even know our name. She is suffering from Alzheimer, a progressive neurological disease.

As care givers it has been a learning experience for me and my husband mostly through trial and error. There are not many facilities available for this incurable disease, both for diagnosis and treatment, the world over but coming from a small town, Allahabad, in northern part of India, we have been deprived of any kind of geriatric care for doctors feel old people do not need so much of concern.

In a country overflowing with people,such apathy towards the elderly is shocking.India is among 57 countries of the world,hit by shortage of trained health professionals.As against the requirement of 700,000 doctors we have just 17,000 doctors according to a survey conduct.The percentage of 80 plus population is 19.1 percent. With increasing patients afflicted with Dementia ,the figure of doctors is skewed indeed !

As both of us work , we need someone to assist us but professional help is not available. Home care attendants are still not easily available as the industry is in a nascent stage.The nurse we keep most often does not maintain a professional attitude and may not turn up when needed. She may not take care of the patient’s hygiene when we are not around. Though our means are modest yet we try to splurge more on the person assisting mother. Often times too much indulgence on our part becomes a tool of blackmail for them. They threaten to leave, ask to double the wage or tend to become complacent while looking after the patient. We often come home to see the nurse drowsy or rapt in a soap opera rather than tending to our mother, who has wet her bed. These two years have been spent in endless entry and exit of nurses. Ultimately, we have decided to end this dependence on external help and have taken matters in our own hands.

As caregivers we have spent hours surfing the net, to find any remedies that might help in stabilizing the disease or delaying its progression. The tragic part of this disease is that memory lapses are often taken as a normal ageing process, even by doctors. We could not fathom why mother was not able to remember terms, faces, sequence of events while she could remember her childhood with clarity. By the time we could figure out her incoherence in speech, she had graduated to incontinence, having trouble with dressing up, bathing and eating. If there has been a crumb of food on her person, the ants attack her bed. If she is wearing a diaper too long, she develops rash or worse bed-sores.Reclining on one side for too long ,she develops pressure sores.

Cooking, cleaning, looking after patient’s hygiene, doing rounds of hospital, running errands and keeping oneself buoyant has not been easy. One of us is there for her all the time. We have no social life. We are always rushing home, afflicted with this Cinderella -syndrome, thinking something might happen to her. Sometimes being in our sterile and clinical smelling home for too long, we fear of our old age. If I forget a name, face or can’t find an item I misplaced, I fear for my future. We are fighting this disease along with mother. The only thing to counter this disease is to look after our diet and our mental wellness. Reading, learning languages, Sudoku, cross-word and regular vigorous exercises are a few ways to prevent dementia from striking early. In the end, all we can do is to give a life of dignity to our loved ones, in our nurture and care. Alas! There is nobody to care for the caregivers.

A devoted son continuously played music for his mother in the hope that it might trigger a memory and she might know him once again!

A devoted son continuously played music for his mother in the hope that it might trigger a memory and she might know him once again!

Note to the reader: This post, a first person account, was written by my dear friend Mamta Joshi, who along with her husband, looked after her mother in law for days which turned into months which turned into years. Her mother in law passed away two years ago but it is only now that Mamta could get herself to write about what they, as care givers, went through. The article shook me up and I could not even begin to imagine what their lives must have become. Will they now, “free” from responsibility, but having lost in time due to lack of help, be able to live their lives fully again?

This entry was posted in Alzheimer, geriatric care, Illness, India, life, medical, research, time and tagged , , , , , , , . Bookmark the permalink.

8 Responses to Tabula Rasa – A caregiver’s plight!

  1. Lata Sunil says:

    My grandmother is in the same stage and many in the family feels, it would be better if she passes on. As you said, lack of awareness and care-givers, depending on someone for help, is what is affecting them the most. And ultimately, no help for the care-givers. This post is just too close to home.

    • zaynti says:

      Dear Lata Sunil, thank you for stopping by to read the post and for your comment. I am sorry to read that you are facing a similar situation at home. It’s quite a bit of a Catch 22 isn’t it? I do hope your grandmother lives a life of dignity even if at the end stages of her life. That is the least we, as children, owe to our parents and elders. Wish you the very best and thanks once again for reading the post.

  2. Touches the heart.. The caregiver’s predicament sparks a thought..we need a support system that would make life a tad more easier & dignified for both patient and family.

    • zaynti says:

      Thank you Vandana for stopping to read the post and for your kind thoughts. Yes, thought has to be given to both the patient as also the caregiver. the latter needs help/respite and the former needs to live a life of dignity. In our country unfortunately, insensitivity rules!

  3. Lincy Francis says:

    It is very difficult to handle a bedridden person. Cleanliness becomes the biggest issue. But human nature and God given love makes us help throughout. My grandmother was also bedridden. Though not so long. She also passed away.

    • zaynti says:

      Thank you Lincy for stopping by. Yes, it is love for our family which makes us carry through. I pray for your grandmother’s soul to rest in peace.

  4. Deepa says:

    Nice article. My mother was in India and dealt with a lot with Alzheimer’s. Doctors aren’t even sure most of the time what it is. They were treating her for psychosis and seizures(which she has never had) and had her on tranqulizer’s all day and night. I brought her back with me to U.S and she is doing wonderful! Once she got the correct diagnoses and medications ,it made a HUGE difference !! I take care of her myself along with my three young children.It is definitely an experience and not meant for everyone,but I wouldn’t trade it for the world!

    • zaynti says:

      Hi Deepa, Thank you so much for stopping by and for sharing your personal experience. You are so lucky to have managed to take your mother to the US and given her the correct care. We have many instances in India where the doctors treat for what is not even symptomatic and end up heavily medicating the patient. I wish her a long and happy, healthy life.

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