Alzheimer’s and dementia are cruel conditions. They rob the affected person of his individuality and dignity and leaves him helpless. Not just the patient, the disease is sometimes more devastating for the caregivers who are suddenly thrust with the responsibility and care of a person who they know will not get better but just worse. It is a situation that demands a lot of patience, compassion and strength in the caregivers. Dr. Rahul Padmanabhan, Consultant, Geriatric services, GKNM Hospital, has some suggestions that could ease the burden of the caregiver, as well as make the patient more comfortable.
Caring for a person with dementia is stressful, says Padmanabhan. “There will be occasions you will be overwhelmed with anger and frustration. Give yourself time to adjust. Remember that you are taking care of a person you love, only he has a cruel affliction.”
A family affair
Padmanabhan says involving the family eases the strain on the caregiver, and makes the decision-making process easier. Important decisions have to be made about the financial, medical or end-of-life-care matters. He says, though it is a good idea to hire help to take care of the patient, it is advisable for at least one family member to be with the patient at all times. In early dementia, the patient feels intimidated if he sees unfamiliar faces around him. “You will also have to decide where the person will spend rest of his life as early as possible. Because changing the environment is better in the early stages rather than later on,” says Padmanabhan.
A caregiver speaks
Five years ago, the family of Professor Venkatachalam began to notice that something was not quite right with his gait. He was not walking normally. His legs seemed bent, and he would fall frequently.
A visit to the doctor did not reveal anything alarming. There was talk of osteoporosis, which is not uncommon for an elderly person. Venkatachalam was at that time around 77 years old. “We thought it was a physical symptom and left it at that,” says his daughter Vanitha Ravindran.
“My daddy was a disciplinarian. He was the decision maker in the family. We consulted him about everything. But gradually, we began to notice other changes. He was withdrawn, wanted to be left alone, he would just sleep, wake up, bathe…He was uncharacteristically indifferent to the happenings around him. And, he had a series of falls. And a lack of bladder control. We still thought he had suffered multiple strokes.”
Soon the changes in Venkatachalam could no longer be attributed just to a physical aging process. He was now repeating himself.
He would brush his teeth, and a few minutes later go and brush his teeth again. He would go to the puja room and apply vibhuti and then go again, and then again. He would ask the same questions every few minutes – ‘did you lock the door?’, ‘has my granddaughter slept off?’ Vanitha says her dad’s brain is no longer sending out the right messages. “If he falters, it does not occur to him to grab the wall or some support to prevent himself from falling.”
Five years on, Vanitha says it is still heartbreaking to watch her once active and alert dad in this condition. But now she and her family are trying to make his life as comfortable as possible.
“I still want him to have a life of dignity, where he is peaceful, not irritated or agitated,” she says. Vanitha is gathering all the material she can about dementia in the hope that she can improve the quality of her father’s life.
Professor Venkatachalam is suffering from a condition called Parkinson’s Dementia Complex.
Emotion Quotient
During the course of the disease, there will be behavioural changes
Don’t confront or argue with the patient. It is unproductive. If the situation gets too much to handle, leave the person alone and come back after a while. Never force the patient, only persuade.
Talk to friends and family about your feelings. It will help especially on days the patient may not recognise you at all.
Talk to your doctor. Some behavioural changes can be modified by medicines. Make your physician a part of your team to handle the patient
Dos and don'ts
Stick to a routine. A person with dementia fears changes. When making a schedule consider the person’s interest and previous life routine.
Don’t just confine patients to a room. Let them eat at the dining table; get them to do chores at home such as watering the plants, etc. The practice of confining the patient to a room is recommended only in the later stages of the disease.
Stimulate their brain constantly. They can be encouraged to do the Sudoku, read the newspaper, do puzzles, listen to music, watch TV. Let them smell the coffee brewing; give them a massage once in a while; hang pictures of the family on the walls where they can see them. Have a room which has a good view of the outside so that they know what time of the day it is.
Visitors can help. But ask them to come at a specific time. Brief them about the condition of the patient.
Dementia can cause loss of bowel and bladder control in the patient. Seek help from the physician to evaluate it. Toilet re-training will help. A diaper or urinary catheter can help to some extent.
If the person is confined to his bed, then he can be sponge bathed. If he is mobile, encourage daily bathing. Avoid evening and late night baths.
