Sunil Vishwanath and wife Sangeetha EG first registered something amiss with his mother Lakshmi Vishwanath five years ago. She constantly fought with her husband. Their loyal domestic worker noticed contradictory behaviour. But the family wasn’t ready to listen.
“We didn’t believe her, thinking she was making it all up. Before leaving, she insisted we get her checked by a doctor,” recalls Sunil. “It wasn’t easy for us to accept. Ma was an individual, amazing cook and homemaker. How could this happen to her?” says his wife. Sunil even relied on her for his own memory. “She knew half my phonebook, lead a healthy lifestyle, was social and well-connected.”
Finally, a risky medication incident with their son prompted a visit to the neurosurgeon. He confirmed early stages of Dementia; her cells were dying rapidly. “It was a hard truth to digest. There was no cure, all they could do was slow down the process,” recalls Sunil.
They shifted home to be close to Sangeetha’s parents. Her father, a doctor, and mother helped with Lakshmi’s care. “The situation was ok until my father passed away two years ago. He couldn’t accept her illness till the very end,” says Sunil.
With hired extra help, Sunil quit his job and ran a business unsuccessfully from home before returning to full-time work again. Sangeetha had a busy job even as she cared for Lakshmi in her spare hours. Over time, it was difficult to cope and the stress was telling on the entire family. But Sunil was still emotional and not ready to give up. They approached an organization working with dementia patients for help.
“The family first approached us for help with her behavioural issues, to manage it better at home,” says Ramani Sundaram, Nightingale’s researcher, and head of ETCM – Nightingales Dementia Care Centre in Kolar, Karnataka.
Dr Sowmya Hegde, associate director of Nightingale’s ageing and Alzheimer’s care, Bangalore, was a huge support during this phase. “She was very patient. We were always on phone, trying different medicines and coping patterns… but nothing worked,” says Sangeetha. The decision to move her into assisted living came after nothing worked. “In India, we are not used to the concept of institutionalising a parent or leaving them in a senior citizen care facility. There is stigma, confusion and guilt. He approached us when he was finally ready to admit her,” says Ramani.“Managing a dementia patient at home is very difficult. One is unable to fulfil their demands, there is frustration, irritation. You may feel guilty about not being able to tackle the situation or take care of your parent but it is the best decision for them. They are in safe hands with trained people who know how to tackle behavioural issues. Nobody will be irritated or shout at them, they will be taken care of well.”
Thankfully, the transition for Lakshmi was quite smooth. Sunil says, “I visited her the next day, she had slept well and looked fresh and happy. We were relieved.”
Sunil’s story would show how moving a loved one with Dementia to an assisted living facility is never an easy decision. Here is how you can make the transition comfortable for you and your ailing relative:
Prepping the Patient
The first thing to bear in mind is that a Dementia patient won’t remember anything you say. Eventually they’ll forget everything as that’s the nature of the illness. There are some who won’t understand and it will be relatively easier to readjust them to the new setting. Lakshmi didn’t understand and Sunil just drove her in. Luckily the facility proved well-suited for her. Sometimes it can prove difficult as the patient knows and is not willing to check in. “In such cases, we tell the children or spouse to use strategies like bringing them in for a doctor’s check-up. The family drops them and slowly moves out. We do have a difficult time when a patient demands to go home but they eventually settle,” says Ramani.
“The family does find it difficult – they cannot promise anything or tell them the truth. They have to say it’s a hospital or a senior citizen centre or social visit. Depending on the patient and their history, we decide what to tell them. We engage the patient and eventually they accept it.”
How you can be prepared
Sunil’s suggestion is, “It’s best left to the experts if an individual can’t decide. Why experiment or confine them to four walls or decide on their behalf?”Having been through the journey, he feels there’s no point stretching the decision. “Experiment, follow your value system for a month or so but not more. A Dementia patient has a pre-determined path. Accept it. Which obviously I didn’t do. I tried interfering and solving it myself. I was wrong in experimenting with my mom and discomforting my family and everybody around me for a year and a half,” he says.“If you can handle the situation comfortably at home, do it. If you are unable to, ask for professional help. Don’t put yourself through the pressure.”
Says Ramani, “People come to us only when they’ve tried everything at home, like hiring help, leaving their jobs. Once they are tired and unable to function, they look at an assisted living facility.
“I always say: That is a very good decision. No need to feel guilty. You have found a specialised Dementia care facility and are extending your love and support in a different manner. We understand their disability and give them relevant activities, track their deterioration, medicate when needed. Our staff looks after them as well or better than you. Your parent is living a good quality of life with a trained caregiver, a good doctor – all of which you can’t provide at home. For a Dementia patient, the luxury of a home or a shared environment makes no difference, it is only for your satisfaction. They are better off with other people, it keeps their social skills intact.
As a family, you also pay for the facility. So cost wise, care wise, it’s a good choice.”
What to look for in an assisted living facility
* Look for a facility that is open, ventilated and has all residents in one place. “In Kolar, cute cartoons of each person are put up next to their bed. It looks green, the air is fresh, you feel calm, composed,” says Sangeetha.
* The caretakers should be open to questions and willing to show you around.
* Be comfortable with the facility and find out its policies regarding family visits, interactions and staff. “Kolar has an open door policy, we can connect through video conferencing, phone calls or visit anytime of day or night. If I feel like talking to her right now, they will connect me. Most importantly, the staff is not feeding her unnecessary medicine, stressed or tired as they work in shifts,” Sunil adds.
* According to Ramani, the most important requirement for a good facility is trained and competent staff. “This assures you that even in their worst behaviour, your parent is taken care of. Sedating patients is not the answer, the goal should be to manage without pharmacological intervention. They try other things than go to the drugs straightaway. To do that, the staff has to be great.”
* Look for a psychiatrist and psychologist on board who will ensure there is no sedation or over dosage of drugs. Typically, they would make a behavioural chart and create a care plan.
* Visit the facility and check for senior citizen friendly features like proper ventilation, lighting and space, raised commode and grab bars. Look for security features which ensure Dementia patients don’t wander away or get lost.
* Examine the facility’s capability to handle medical emergency. See if its attached to a hospital or has a doctor on call 24X7.
How assisted living caregivers make the transition smooth
Recording a patient’s history with the family’s help is vital for a smooth transition. This is done to equip caregivers with relevant information about the new entrant to help them adjust. “We record details on memory status and behaviour: all that they remember, their aggression, hallucinations, delusions and anxiety levels. Plus their daily living, self-care and independence status. This gives us an idea about what kind of care plan is required. Depending on the deficit, we put management strategies in place,” says Ramani. “We capture the minutest specifics of a person: how he or she likes to be called, what makes them happy or sad, what they enjoy or hate doing, their daily routine, eating habits or what they did for work before. That way when they arrive, we already know them and can give them an instant sense of familiarity. They don’t feel like people don’t know them or don’t care.”
The assigned caregiver would not only know the patient’s name but also their spoken language, problems, specific help needed and strategies to deal with the individual. The transition period in most cases is not more than a week.
Ramani mentions, “Recently we had someone who loves gardening. The first day we gave him a water jet so he could water plants. He felt good. That helped start the conversation and connect him instantly to the place.Of course, the process is not smooth all the time but mostly this is how it goes. Sometimes a patient with no behavioural issues may have a difficult transition. Or a difficult patient settles in instantly. It changes from patient to patient and situation to situation. The caregivers are trained to handle that.”
If you are going through a similar situation with a loved one with dementia and have decided on an assisted living facility, remember that no two situations are alike. But do remember that if it’s a well established facility, the caregiver is trained to tackle things during a crisis and it may be the best way to help your relative with dementia.
Story Link: https://silvertalkies.com/assisted-living/