Choosing Long-Term Care: Advice From a Social Gerontology Expert

Choosing Long-Term Care: Advice From a Social Gerontology Expert                                      SOUMYA NAIR

A paradigm shift in the outlook of elders and their families is the new order as more elderly Indians are willing to live in care facilities. For a large majority, nothing is more perplexing or consequential than choosing between the many available permutations of long-term care, selecting the most appropriate for our families and figuring out how to pay for it. SOUMYA NAIR unfolds the nuances of institutionalization of your parent. It’s hard – and it’s complicated. Being a social gerontology practitioner, she share her experiences. Here’s what to consider when evaluating a long-term care facility.

Ranganath Ray, a former professor at the Department of English Literature of Jadhavpur University, chose to spend his twilight years in a nursing home after retirement. Ever since he lost his wife to cancer, he made up his mind that he wants to be in a care home rather a burden to his children, who live elsewhere. Though some people questioned the intelligence of the decision by Ranganath, a famous essayist, thinks it is better to be in the company of others rather than be isolated with increasing disabilities. An increasing number of India's senior citizens now choose to live in retirement or care   homes rather than spend their remaining years with their children at home. Fortunately for them, modern telecommunications technologies, particularly social networking, has made them feel closer to their children.

Jayalakshmi, 75, an arthritic patient, though bed bound for several years lives her life in full without the feeling of loneliness and fear, although her daughters live abroad. One year ago, she moved to a Senior Citizens Care Center, a private nursing home in Bangalore. Her single room was filled with books, mostly religious and daily necessities. Jayalakshmi has many things to do. As she said, "being an arthritic patient, it pains a lot but I have no time thinking about the pain because all the careworkers  in the facility treat me like a queen and pamper me with love and care." She received a knee surgery last year. But after that, she did not hire a nurse to look after her at home. "I cannot bear facing just one person all day long. Also, I am unable to manage my big house. I need a hassle-free life." she said. Thus she moved to the care center, where she found the company of many others. It was she who convinced her daughters who live in US about this decision.

Janardhan Pai used to worry about the impatience and lack of professionalism of the staff at the nursing home. Initially he was skeptical of the negative portraying of such care facilities but everything changed as he get used to.   "The nursing home provides me a quiet and reliable place to do what I like and to meet more peers," Pai said. He believes that hobbies and friends are extremely important for old people, especially in their remaining years. Pai's optimism and engagement in life are not commonly seen among elderly Indians.

"Like the kid’s first day in the play school, most of them usually feel panic and loneliness when they are first taken here by their sons or daughters," said Swetha Janardhanan, Care Manager of a well run Senior Citizens Care Center. Some of them can adjust to the new environment quickly, while others take along time and few cannot.

India’s older population will increase phenomenally over the next four decades. According to the United Nations Population Division (UN 2011), the share of India’s population ages 60 and older is projected to climb from 8 percent in 2010 to 19 percent in 2050. By mid-century, India’s 60 and older population is expected to encompass a monumental 323 million people, a number greater than the total U.S. population in 2012.

The more worrisome is not again the numbers alone but certain other underlying social factors. This profound shift in the share of older Indians—taking place in the context of changing family relationships and severely limited old-age income support—brings with it a variety of social, economic, and health care policy challenges. More and more old people would have to live alone, without the companionship of their children. "At that stage, the nursing home will be a greater necessity, compared with previous years," Swetha said.

‘In our experience, very few come on their own, as they fear the social stigma. Many of them get institutionalized after much persuasion and cajoling by the immediate family. Few of them come after they mess-up the condition and the quality of health worsens.  When condition turns out to be absolutely irreparable, this is when one frantically look for a care facility,’ Swetha continues to share her experience.

Last minute search and planning will end up in a mess. In the Last minute approach, one will be under tremendous pressure to find a care facility and our vision gets hazy in such situations to differentiate between a good and a bad care facility. So always be prepared to do a bit research of a good facility if you have infirm elderly parents. It is better to broach this subject beforehand with the siblings, as there should not be any conflict later and thus the parent suffers. Having reaching consensus is important as the decision involves emotional, physical and economical aspects. 

There are facilities that operate more like resorts; a fancy lobby doesn’t necessarily mean that care is high-quality! It’s important to evaluate your loved one’s needs and then look for the best match, with a view towards future needs as well.

Now, let’s talk about the parameters of a ‘Good Care Facility”. In simple terms how to choose the right one. No matter what type of long-term care facility you're looking for, there are few basic steps that apply. Use these few steps as your guide as you narrow down your options.

1. Shrug off that guilt

Many children hesitantly admit their parent into a care home. Feel guilty because they feel bad as if they are doing a crime. Firstly, you must understand that you no longer capable of providing care, as he/she needs more professional care and team approach. What if your parent’s condition warrants advanced care needs. You may be dealing with chronic or progressive conditions such as Alzheimer’s or Parkinson’s disease, diabetes or congestive heart failure, or a sudden crisis like a stroke. Care may be needed 24/7, and it might not be feasible for you to provide all the required care at home. It is always better to have a pragmatic approach. Instead of giving inferior care or neglecting, why not overcome stigma and guilt and think that your decision to institutionalize is the best option for your parent. Remember it is in the best interest of your parent’s care and emotions are secondary. Next step is to search and find an appropriate facility.

2. Search begins

In today’s world search means, internet. Most of the facilities are listed there and many have their websites. There are several online guides to assisted living facilities to help find a unit in your geographic area, but the guides are not necessarily comprehensive. A closer look at the web sites provides information about many aspects. Additionally, little investigative work, along with personal recommendations, can help to find a facility that fits your family’s needs. From here we shortlist few and make contact. Recommendations from friends and relatives are the best.

3.  Ask questions about the facility and the care extended.

By asking questions, you are finding out the details of life within the facility. Don’t be afraid to ask detailed questions – in person, over the phone, or via email. You’ll want to know what kinds of care are available and common. How often will your parents see a nurse, or a doctor? Can they continue to see their family doctors? What other staff work in the facility and what are their qualifications? How are meals handled? How does the daily routine work – how much choice will your loved one have about when to get up, snack, and so on. What activities are available? How are personal possessions handled? What about extras such as hairdressing or trips to local stores? You may ask more questions about care standards, hygiene, the background of the people who runs and their passion, staff ratio, their training etc,.

4. Visit the Long-term Care Facility in Person.

Personal visit to the facility is important to satisfy yourself. Taking a tour of the facility will give you a great deal of information. Take stock of all your impressions, first and otherwise. Does the facility seem safe, friendly, and clean? Do there seem to be adequate staff, and is their attitude and demeanor professional? How does it smell and sound? Is it too hot or too cold? Do the residents seem generally happy and, where they seem able, engaged with their surroundings?  Is the facility in a good location? Is the neighborhood safe? Is it in a location that is convenient for family members and loved ones to visit? Are there any unpleasant odors lingering? Is the layout conducive to getting around if mobility is an issue? Trust your instincts.

5. Talk to Current Residents and Their Family Members.

Most of the inmates have adjustment issues and old age is synonymous with irritability and peevishness. Few of them have impaired mental faculties where answers can be distorted. So many answers must be taken with considerable degree of wariness.  No one knows what it's like to live at a long-term care facility better than current residents and their family members. Ask them if they're happy there. Is there anything they would change? Do they have any complaints or problems that have not been resolved, or any problems with staff members? If you can, try to ask these questions away from staff members so that the residents and their families feel free to give candid answers. But sometimes the answers can be quite tricky depending the inmates mood.

6. Meet with Staff Members.

Do staff members seem to get along with one another? Do they seem to have a good camaraderie with the current residents? Is it evident that they enjoy working there? Or do they seem stressed, rushed, unfriendly or ignorant? If any of the latter is true, try to determine why this is. Communicate any concerns to the long-term care facility administrator so he or she can address them. If the facility is chronically understaffed or has a high rate of turnover, then your loved one's care could suffer as a result. It's worth having a conversation before taking the plunge and moving in or writing the facility off your list.

7. What are the religious affiliations?

Religions factions run many care facilities and you need to find out whether you subscribe to it. Many a time your parent will not fit into a different religion and may find it difficult to gel. Practices differ and it can be matter of concern later. If you’re looking around, you should certainly ask how much the faith affiliation influences the activities of the facility, but I think most people will find that the faith-based orientation is restricted to the chapel (X’ians) and may be bhajans when it comes to Hindus. Basic tenets of caring remains the same. One important thing for people to find out is the number of other residents who share the same faith and whether or not there are services and pastoral support to help you stay connected with your faith tradition.

8. The costing factor

Regardless of what happens to long-term care financing in the future in this country, there are more and more families stuck in the middle of this right now, beset by huge expenses with no idea of how long they will last and thus no way to budget for them. How can families make wise decisions given the available options and the unpredictable trajectory at the end of life? Primarily, countries like India where no long-term care insurance, out of pocket spending is the norm.  The middle class in India has the affordability but not willing to spend for a smooth sailing of the twilight zone. Basically, it’s the mental make-up.

Whatever the case, the most important thing people can do is to acknowledge when they are in their 50’s and healthy that they are likely to need care at some point in their lives. In fact, if a person lives to be 65, there is a 69 percent chance he or she will need some kind of long-term care. Elder care is no longer cheap and it is going to be same or escalate in the years to come. So, be prepared to spend. So, if you admit you or your parent might need care, you can think clearly about what’s most important to you and research the best options that are available in your community. A good care home, with an average cost 7.5 Lakhs per year, are often the most expensive but best desirable setting to receive care, and are essential for those with the most complicated health needs. But if the health declines beyond the basic package of services, you might be looking at a different option or extensive out-of-pocket costs to fill in the service gaps.

9. Your involvement makes a difference

As the primary caregiver, you’ll still have a fundamental role if your parent moves into residential care. While you’ll no longer be responsible for the hands-on tasks, you’ll serve as frequent visitor, liaison, and, especially, monitor. You’ll likely be involved with paying bills, arranging medical appointments, talking to health care practitioners, and ensuring appropriate follow-up care. You’ll get to know the staff, check that proper diet and medications are provided, that your parent is participating in social activities as much as possible, and that he or she gets attention when needed. And, because your parent may not be able to, you’ll be his or her voice to express gratitude or request changes in care. It’s an important — even indispensable — role to play. Your involvement makes lots of difference.