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Living alongside dementia - one service user's experience

22nd September 2024

“My contact with someone with Alzheimer’s started way back in the early 80’s, my dear mother… It was slow and insidious to start with – sudden, occasional, lapses of memory and long periods of solitude; her GP put it down to depression because of my elder brother, his wife and 4 children, suddenly leaving the family home and moving away.

Mum almost single handedly brought up those children for about 20 years. However, as time went on she forgot she’d had her meals and used to demand food because ‘you didn’t feed me my meals’. From time to time, we’d hear from friends who’d visited the house or from the domestic help that we’d employed to take care of her, that they should give her soap/shampoo because we didn’t give her a bath for long periods of time. With time she lost bowel and bladder control, and her speech was slow and measured. After that within a few months she began to go downhill and passed on. In all, she was bedridden for approximately 3 years. Prior to falling prey to Alzheimer’s she was a bubbly woman, known for her friendliness, cooking skills and social interaction.

On the second occasion, I became a full-time carer to my wife. She had started to receive chemotherapy, and we noticed that at the end of that period her memory began to suffer hugely – so much so that I had to take over the various tasks related to banking and giving her medication on time and assisting her in the kitchen whilst she was cooking. She’d forgotten how to reach the GP’s surgery etc. She was unable to tolerate the medication that was prescribed for her diagnosis of Dementia. However, she was in the very capable hands of a neurosurgeon who stopped her chemotherapy and devised a healthy meal plan for her plus recommended she immerse herself in games called Brain Training; these are available for FREE as part of ‘Messenger’ in Facebook. She also resumed knitting, sewing and crocheting with gusto. She is stable and, according to the neurosurgeon, that’s the best we can achieve, and she will be stable contingent on her following the strict regimen devised for her.

The third person with Alzheimer’s was rather a sad one for me. I didn’t have to care for him. He was a retired lawyer but had to stop practicing once he developed renal failure and had to have dialysis three times a week. We met every week, once a week, for communal prayers; he was a highly intelligent and well-read man, and I ended up learning a great deal from him. We also visited many places of interest when time permitted. One fine day he received a call from a hospital telling him that a kidney match had been found and a renal transplant operation was scheduled for him. Postoperatively, I visited him in hospital and at home, but I immediately noticed a decline in his cognitive functions at every subsequent visit and I am positive that at my last visit he had failed to recognise me. Within a few months he had left us. Sadly, his family would not give out much information as to his rapid decline. One can only speculate [what] may have caused his Alzheimer’s.”