Carol D’Souza, a consulting psychologist, recounts her mother’s advancing dementia and how she and her family made peace with the agonizing decision to put her in a care home.
Putting my mother in a Home was one of the most difficult decisions made by my family and me. Onset of dementia seemed so sudden for her; it started with bizarre behavior of her staying awake all night – worrying about all sorts of things she absolutely did not need to. Her life had turned into a nightmare and so had mine.
A little earlier (August ’13) her thyroid test indicated low TSH (thyroid stimulating hormone) levels and the doctor recommended an MRI with the injectable dye. This truly scared her. After much persuasion she took one. But I wonder if the stress of the test exacerbated her condition. My mother refused all tests thereafter. She did not even want to take her blood pressure medicines which she was taking on her own for years. At times, she spoke and behaved coherently which made it all the more confusing – was it dementia or was it something else?
Through the internet we found that thyroid problems and low sodium could be the cause, so the first thing we wanted to do was start her on medication. Mom became adept at making us believe she had swallowed her medicines, but we would often find them on the floor.
By February 2014 she agreed to have the Mini Mental State Exam which showed mild cognitive decline, and the Wechsler’s Memory Scale which revealed a below average range of mental functioning for her age. Psychologist’s tentative diagnosis said ‘dementia in Alzheimer’. In July 2014 she had the thyroid antibodies test, which was normal as were her homocysteine and Vitamin B12. Even her TSH levels returned to normal after treating with homeopathy. Her hallucinations had stopped but her behavior was still delusional and accusatory. She refused a brain MRI. During her good days I did not want to push her as I was afraid that might put her over the edge again.
Problems ranged from mom locking herself, refusal to eat as she was suspicious we were putting drugs in her food, to running away from the home due to fear that we would do something to her. She lived in constant fear. She followed me around the house and would keep questioning why we were doing this to her. It was difficult for me and for my family. Physically mom was fine. Most often she could handle her own self-care – but from being one who was always impeccably well groomed and well dressed– she turned into someone who couldn’t care less.
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Before dementia she was interested in reading the newspaper, doing the crossword, and watching news and sports on TV, especially tennis and cricket. All this stopped, however she still wanted to go for an evening walk. So daily after my evening swim (which I needed to cope with the stress) I would go with her for a walk, during which time she enjoyed the breeze and remained very quiet. I tried having a caregiver especially for her but she just did not get along with her.
The question before me and my sisters who all live abroad, was what was best for our mother and for me and my family as well. My sisters often came to live with me to help out during this period and we decided to look for a Dementia Care Home.
It has been a year since we put mom in a Home. She is more peaceful now; has a better relationship with me and trusts me. But her paranoia has to some extent transferred to her current caregivers. It is distressing each time I visit her as she asks to be taken back home. But what she actually means is that she wants her life as it used to be, which unfortunately cannot be so anymore.
