What are the criteria for finding good in-home care services?

What is home health care?

Home health care is the process of providing health care to people in their homes. This could include post-trauma care, post-operative care and elder care, and may range from supporting daily living activities to complete at-home ICU setup.  In this article we will restrict ourselves to home healthcare for elders.

The need for home health care

Of late, India has woken up to the need for home health care.

Firstly, a burgeoning population is putting a lot of pressure on hospitals to treat and discharge patients as soon as possible.  This is extending the post-hospitalization and recovery period where people who have come back home continue to require a fair amount of health care in order to fully recover.

Secondly, the elder population in India is growing steadily and small families are finding it hard to look after the elders at home without professional help.  India today is home to over 120 Million people above the age of 60 and a good 10% require some health care and support at home.

These two together are creating a new market for professional home healthcare services.

Introduction to professional home healthcare services in India

“Home healthcare services” is still a nascent industry in India.  It is also a very challenging space because the requirements and conditions in India are very different from those in developed nations. Which means that we do not have a successful model to emulate or follow.

Currently, there is no regulatory body or umbrella organization for the home healthcare sector that could regulate and set up the rules of engagement.  So, we are pretty much bordering on what can be called an unorganized, unregulated sector.

Also, most home healthcare services organizations are independent organizations not affiliated to any hospital.  This means that, more often than not, the hospital is not aware of what specific services the home healthcare agency is providing for their discharged patient and whether it is in line with what they – the hospital –  has recommended. In fact, most often, the home healthcare services are provided without any supervision or monitoring by a doctor.  This means all the due diligence in the selection process and the supervision of their work with the patient rest solely on the shoulders of family members of the patient.

This is why it is essential to learn how to select the right service partner for you.

  1.  Collect the list of service providers operating in your area.  These could be individuals (freelancers), general manpower agencies, local hospitals’ outreach business arm, or dedicated home healthcare providers.
  2. Select a service partner who meets your current requirements and be prepared to switch to a different partner if the needs become more complicated (or less complicated) as the case may be.  This will give you some flexibility in managing costs.
  3. If you are selecting a freelancer or individual, there are both advantages and disadvantages. The advantages and disadvantages are
  4. (A) The cost will be low.
  5. (A) If you have the space, you can find someone who is a live-in service agent.  This will prevent sudden “no-shows” and unexpected disappearances.
  6. (D) You will have to do all the due diligence starting from the security aspect onwards.  Is this person reliable?  Where do they live?  Do we need to get them to get a police clearance?  Should I get copies of their important documents?   These are all some of the questions you will need to grapple with.
  7. You will be responsible for their personal needs in terms of food, security and shelter (in the case of a live-in).
  8. When they leave for whatever reason, either permanently or for a short/long leave of absence, finding a replacement can be challenging.
  9. If you are selecting a general manpower agency, it should be only for a companion or a nursing assistant (untrained helper).   You should not rely on a general manpower agency for professionally qualified personnel such as nurses, physiotherapists, occupational therapists or doctors.  The advantages of going to a manpower agency over an individual is that you can expect the manpower agency to do some of the due diligence (though we would strongly recommend that you do your own due diligence).  Additionally, finding a replacement for a truant caretaker may be easier.  On the down side, expect “no-shows” and everyone involved, from the agency to the actual personnel, to be “unreachable” at such times.
  10. If your local hospital provides home healthcare services also, that is ideal.  Since all the services are provided by the same organization, one can hope that they all work in unison and provide you with the right level of support whatever your needs are.
  11. Finally, there are a number of independent professional home healthcare agencies that have come up in India recently.  They are expensive, but they provide a wide range of services from house calls by doctors to 24×7 intensive care.

The bottom line in all this is that the quality of service received is, at the end of the day, dependent on the quality of the individual deputed to provide that service.  As a fledgling industry, training of personnel for home health care is still not very advanced and you can expect a lot of rough edges.  Be prepared to spend time on training the deputed personnel on matters such as hygiene, empathy, kindness, caring and pleasant bedside manners.  You will also have a tough time taking them away from their phones!

All the best!

How to handle a parent who has become, bitter, rude and even more stubborn as they have aged?

DementiaThough this may sound pithy, it is true that old people are like children. And sometimes, the older they get, the more child-like and/or childish they become. While this can be endearing at times, it can also be very frustrating and annoying. Not to mention, difficult to manage.

If you feel that your elder loved one is behaving badly, ask yourself this question.
Is this completely new, surprising behaviour or is this their usual inherent traits getting magnified a bit (or a lot)?

If you feel that there is a sudden and drastic change in the personality of the person, then this could be a symptom of dementia. Seek professional help. Take the loved one to a neurologist and have a proper assessment done.

Dementia is a generic term for decline in mental ability of a person. It is not a specific disease. Alzheimer’s is one of the common forms of dementia among elders. Dementia results in a loss of ability to perform even routine tasks properly and the person suffering from this may become frustrated and angry at their own inability which can then manifest itself in the form of bad behaviour.

If on the other hand, the traits exhibited have always been inherent in the person, except that it is coming to the fore more often and more forcefully, then it could be due to other factors.

In both cases, a lot of patience, tolerance, love and care are needed. Here are few tips for handling such situations:

1. Try and identify the cause(s) for their frustration.

2. Help them in tasks they are having difficulty with.

3. Where possible assist them in finding ways by which they can remain independent, rather than taking up those tasks yourself. For example,

  • If they are constantly forgetting things, get them a board on which they can write things they need to remember and allow them to use it to supplement their memory.
  • If they are forgetting dates and seasons, get them a big calendar that they can refer to regularly.
  • If they are misplacing things, help declutter their living environment and designate places for the things they misplace. For example, a decorative and distinct keyholder can ensure that they hang all the keys there. A spectacle stand kept within ready reach can help them remember to leave their specs in the same place most of the time.
  • If they are getting lost, buy them a wearable GPS tracker. This may not help them but will help you ensure that they don’t wander away and get lost.

4. If they are abusive or physically threatening, then get them to sit down and explain why such behaviour is disturbing to you and ask them how you can make them happier. If that does not work, you can switch to expressing your displeasure at being abused and take certain actions to ensure that they get the message that you will not tolerate bad behaviour. For example, you can move out of the room saying “I am not going to come back till you calm down and behave properly”. If they get physically violent, get support.

5. If they are suspicious of you, don’t take it personally. Many times, you are the only person they are interacting with and so you become the easiest target to vent out all their frustration, anger and suspicion. If they are worried about monetary issues, keep their bank passbooks and other asset related papers somewhere close to them, so they can go through them whenever they want and reassure themselves.

Each case is unique. The main thing to remember is that you don’t have to face it all alone. Get help. Talk to your friends and family. Enlist their support. Talk to fellow caregivers. Join a self-help group. Approach NGOs that are working with elders.

Above all, tell yourself that their behaviour is not a reflection of their opinion of you. Don’t let your self-esteem suffer. All the best!

Understanding men and women in their old age

depression-in-the-elderly-290x217A recent article in the Times of India talks about how men tend to get depressed in their old age while women tend to get more adventurous.

This is something we have also noticed on our trips to old age homes and retirement communities. In all of these places, women appear happier and more participative while the men appear subdued and sombre. While the women band together and enjoy group activities, the men seem to shy away from the company of others.

There could be many reasons for this difference in behaviour, especially in an largely male dominated Indian environment.

Let’s look at why women may be happier at old age homes.

1. They have other women of the same age group to share their days with. There are a fair number of studies that show that women thrive in the company of their girl friends.

2. They don’t have to cook, at least unless they actually want to.

3. They are no longer expected to be at the beck and call of their husband / children.

4. They no longer have to take care of all the house work.

5. For the first time in their lives, they have the time to pursue things that interest them.

As for the men:

1. They feel they are no longer the centre of their families. They are no longer the bread-winner in the family and this can take some getting used to. Retirement deprives them of work, company of peers, and the self-esteem that comes from earning.

2. Without work, there is no vacation. Many men make elaborate plans for after their retirement with rest, relaxation and recuperation forming a large part of it, only to find themselves looking for work again, not for the money but to feel part of a society in which they are a contributing member. So the free time they should be enjoying no longer feels like an extended vacation, but makes them feel they are wasting time.

3. Many of the retirement homes do not allow liquor. Some of the men who had enjoyed some social drinking during their working days may be missing such activities.
If your parents are living in an old age home or retirement community, please do observe them and see if they are showing any signs of depression. Especially the men, they may not tell you themselves that they are feeling depressed. But with your care, some counselling and where required, proper treatment, you can help them live their senior years in a happy frame of mind.

Understanding and dealing with faecal incontinence

Any form of incontinence, though may not be fatal, can surely rob the life of the affected.

faecalIncFaecal Incontinence (FI) is basically lack of control over defecation leading to involuntary loss of some or all of the bowel contents. This is a symptom and not a diagnosis. There can be several underlying reasons for FI including recent anorectal surgery, damage during childbirth, weakened sphincter, Irritable Bowel Syndrome (IBS), Chrohn’s disease,  just diarrhea or neurological conditions such as Alzheimer’s and dementia. Luckily not too many people suffer from this. It is estimated that just over 2% of the adults suffer from faecal incontinence at some point in time and only 0.5 – 1% of adults experience regular FI.

While potential embarrassment is a major worry, there are more serious health concerns associated with FI over and above the underlying causes of the FI in the first place. As the skin around the anal region has prolonged contact with faecal matter, this can lead to maceration, which is the softening and whitening of the skin due to continues exposure to moisture. Additionally, because of the bacteria that flourish in the faecal matter, Urinary Tract Infections(UTI) become more common. Finally, especially in the case of bedridden people, bed sores (also called pressure ulcers) start forming rather frequently.

Use of adult diapers and their regular change can help mitigate some of the problems. Also regular cleansing and strict maintenance of hygiene can go a long way in reducing the chances of bed sore and related issues.

If you or your loved ones suffer from FI, do approach a Doctor at the earliest.

A note for those family members living with their elder parents or relatives: Many people suffering from FI are too embarrassed to discuss this problem and may be trying to quietly deal with the problems themselves. If you notice frequent and hurried visits to the toilet, reluctance to leave home, frequent washing of clothes, especially undergarments, stains on clothes and bed linen and smells associated with fecal matter, broach the subject with sensitivity and gently get them to allow you to take them to the Doctor.

Workshop on Incontinence

The management of Old is Gold Store; Prithvi, Jaya and Sanjay felt the need to address the long neglected topic of understanding and managing incontinence (bladder weakness) among the senior citizens of our community. This led to the idea of organizing a workshop on incontinence for the benefit of elders and medical professionals. In January 2016, they organized a free workshop for senior citizens called “Bladder weakness (incontinence) – coping with ageing issues”.

“I believe a lot of elders are embarrassed to talk about incontinence, leave alone actively  try and find a solution. By avoiding and neglecting this issue, the caregivers’ burden grows and their loved one suffers,” Prithvi said.

“We want to help elders understand and cope with incontinence with some of our products designed to provide comfort and relief,” Sanjay said.

This workshop addressed incontinence issues and solutions and was sponsored by M/s. Bella Premier Happy Hygienecare Pvt. Ltd, the makers of Seni Brand of Adult Diapers. The workshop was held on Thursday, Jan. 07 from 2:30 p.m. to 6:30 p.m. at Natesan Institute of Co-operative Management (NICM), Anna Nagar.

The key speakers were Dr. Kalaivani Ramalingam MBBS,DGO, MRCOG, CCT(UK), Consultant Urogynaecologist, Chennai Urology Clinic, Apollo Hospitals who spoke about “Incontinence – understanding the change” and Mr. Jerzy Jusiega (Seni, Poland) who spoke about “Incontinence – management: the easy hygienic way”.

Jayashree - Director, Old is Gold Store

Ms.Jayashree – Director, Old is Gold Store, welcoming the guests.

Ms.Jayashree, Director, Old is Gold Store welcomed the packed audience and introduced both the speakers. She also outlined the vision behind Old is Gold Store and the need to address issues involved with Geriatric Care.

 Dr. Kalaivani Ramalingam MBBS,DGO, MRCOG, CCT(UK), Consultant Urogynaecologist, Chennai Urology Clinic, Apollo Hospitals who spoke about “Incontinence – understanding the change”

Dr. Kalaivani Ramalingam , spoke about “Incontinence – understanding the change”

Dr.Kalaivani’s presentation highlighted the problems faced by elders, both male and female. The presentation with accompanying slides was explained in layman’s terms in both English and Tamil for the benefit of the audience. The presentation lasted about 30 minutes and was followed by a Q&A session. Dr. Kalaivani Ramalingam answered all the questions put to her by the audience with patience and clarity. This was well received by the audience who were happy to have their questions clarified.

Participants at the workshop

Participants at the workshop

View Dr.Kalaivani’s presentation on YouTube

 

Mr. Jerzy Jusiega SENI, Poland demonstrates the use of incontinence support products.

Mr. Jerzy Jusiega SENI, Poland demonstrates the use of incontinence support products.

The next presentation was by Mr. Jerzy Jusiega (SENI Adult Diapers, Poland) who spoke about “Incontinence – management: the easy hygienic way”. Mr. Jerzy Jusiega highlighted various incontinence products developed by SENI, Poland. He stressed the need to choose the right diaper and demonstrated how to take measurements. He also gave information on the latest technology used by SENI to manufacture the best incontinence support products.

Anitha Paramasivam

‘Andha Naal’ a retro quiz conducted by Dr Anitha Paramasivam

There was a 15 minute snack and coffee break followed by the much awaited ‘Andha Naal’ a retro quiz conducted by Dr Anitha Paramasivam. This quiz was open to senior citizens and medical professionals. Dr. Anitha was a charming and a witty hostess and was easily able to carry the audience with her. The participants enjoyed themselves and answered eagerly to all the questions. Those who gave the correct answers were rewarded with a discount voucher from Old is Gold Store.

Mr.Prithviraj - Director, Old is Gold store giving a discount voucher during the retro quiz show

Mr.Prithviraj – Director, Old is Gold store giving a discount voucher during the retro quiz show

Mr. Sanjay Dattatri, Director - Old is Gold Store.

Mr. Sanjay Dattatri, Director – Old is Gold Store, giving the vote of thanks.

The workshop ended with a vote of thanks by Mr. Sanjay Dattatri, Director – Old is Gold Store.

What is caregiving?

0314_SeniorCaregiving_LeadShotCaregiving is the process in which one individual (caregiver) looks after another individual (care recipient) who is in need of special support to go through their day. In the context of this book, the care recipient is a 60+ years old individual with some form of disability.

Caregivers can be professional caregivers – nurses and nursing assistants or family caregivers, meaning a member of the immediate family, such as a spouse, child, son- or daughter-in-law, a grandchild or a close friend of the elder individual who needs the support.

In earlier times in India, professional caregiving was restricted to hospital stays only.  All other caregiving was done at home by members of the extended family all living together in a joint family system.  In such large families, people of all age groups lived together and between them managed to look after each other without too much of stress accumulating on any one individual.  Additionally, the fact that very few people lingered on for very long after any significant affliction meant that there were not that many long-term bedridden people around.

However, things have changed quite dramatically over the last couple of decades. On the one hand, the joint family system has all but disintegrated, especially in the urban areas, and on the other, the improving health care available to everyone has increased longevity.  Together, these two changes have increased the number of elders requiring home health care while simultaneously making caregiving a more difficult activity for the one or two family members around.

 

The Non Resident Care Giver

caregiver-picture-300x221Every family has one and if you’re not so lucky, several.  Who is a non resident care giver? Usually a blood relative, a sibling, a cousin, an aunt, an uncle living elsewhere could be Mylapore, Mumbai or Minnesota. Absence maketh the heart fonder and so after several promises they finally make good the threat of actually landing up to do their bit.

You are relieved since you have been the care giver working meticulously and now established a method to all the madness that very often comes with the territory of care giving.  It varies, but could include keeping your loved one clean, changing diapers, feeding, balancing the diet, managing a battery of drugs to be given, lifting, visits to the clinic, and the millions of details that you now do with ease. You actually look forward to the visit and then he /she comes, usually she and then after the hugs and shakes comes the emotional outburst which may include how weary you appear to be or better still on how the patient used to be and look at him / her today, holding hands and the warm words does flow  with the reassurance “I am here”, you feel relieved, in fact a little energised , and get carried away asking what he or she would prefer for lunch. An exotic dish that only you can cook up. “Don’t bother”, you have enough on your hands without cooking what I want or like, but then if you insist that “potato porial” that you make is absolutely “divine” always remember it and it makes my mouth water, just describing it”. Enough ammo to get you going to the kitchen and then you remember that you have run out of an ingredient required. You quickly order or ask someone to fetch or why not go across and pick it up.

It’s time to feed your loved one, so you go about the routine with the ease of someone who has been doing it for a while now, but then the visiting care giver has to do her/ his bit and depending on where he or she is from enquires politely if you are supplementing with Glucosamine, Chawanprash or Kashayam depending on where the relative is from Minnesota, Mumbai or Mylapore in that order.

After a lecture on range of miracle food supplements that vary in efficacy from preventing cancer to hair fall, you are left wondering why does anyone get cancer these days, perhaps just a lack of knowledge.

If the non resident care giver is from Mylapore you only need to think of tea time and the snacks needed and if it happens to be Mumbai or Minnesota then you very well need to plan dinner, accommodation, clean sheets,  soap in the bathroom, toilet paper, if need be.

At the end of the day the virtue of Skype starts dawning on you. As a care giver you could do with less advice, a smaller dose of expertise and you seem relieved when you hear the all too familiar “Take care, let me know any time and I will be there” and you are left with the comfort of fending for yourself with the limited expertise that you have gathered. God bless the non resident care giver.

First published in the Care3 caregiver newsletter.

May be it is not as bad as it seems

notbadThe two sisters came in looking for something for their dad. From their conversation with each other, one could make out that their dad was not keeping well, was stubborn and inflexible (like some seniors who have been fiercely independent all their lives are wont to be), but still very much loved.

The sisters, one resident and the other visiting, were carrying on a banter about the dad’s shenangans with a subtext of indulgent smiles, crinkled noses, shrugs and sighs. One could see that despite the obvious love and affection they had for their dad, their nerves were frayed and their patience was wearing thin.

As they were browsing, Mr. S came in. Mr. S is 70+ and an old customer. He had not visited since his mother had passed away a few months back. He looked a little thinner and a bit more harried. I enquired politely about how life was treating him. A casual question, but it must have been the key to the flood gates, for there was such an outpouring for the next few minutes.

Apparently, he had had a mild heart attack and had undergone an angioplasty since he last met us and was just recovering. As though that was not sufficiently taxing, his father-in-law had moved in with him as he had been recently diagnosed with some malignant form of cancer. The F-i-l was apparently largely confined to bed now and needed constant looking after – the usual diaper change and feed and all the other help in taking care of his daily living – not to mention sleepless nights and visits to the doctor involving interminable waiting times. Poor Mr. S, not only did he have to take care of himself, he had an even older man to look after. No wonder he looked harried. I could not do much more than mumble some inane platitudes about keeping up the spirit and how things will work out well in the end and so on. He sighed, bought some diapers for his father-in-law and left.

The two ladies who had fallen silent in Mr. S’s presence seemed to come out of a trance. “Wow! We are in a much better state than that poor man. We have no right to complain”, they said and left the store in a much better frame of mind.

I only hope they remind themselves of this every time things get more difficult. As for Mr. S, I can only wish him good health and the strength to endure and survive this trial too.

Of remote caregivers and happy endings…

caregiverMr. P came to our store yesterday. Since his mother’s passing 6 months ago, he had not had any reasons to come to our store, so it was a bit of a surprise for us.

More surprisingly, instead of the usual glum look, he was grinning from ear to ear. And he had a lady in tow. With a great deal of affection he introduced the lady as his lovely wonderful sister from Delhi. He also announced that his sister had arranged for an all expenses paid 15-day trip to Europe for him and that he was leaving next week and would like to buy some Anti-embolism stockings for himself.

He chatted with us for a few more minutes, paid for the socks and left with a spring in his step.

We were happy to see this wonderful change in Mr. P for we knew that neither his life nor the relationship with his sister had been so sunny before.

His ailing mother had lived with him for over 10 years till her recent death. A seventy year old retiree himself, it must have been difficult to look after himself and his mother. His sister apparently had offered to look after their mother, but unfortunately the Delhi climate had not suited her so after a short stint she had returned to Chennai to stay with her son.

According to Mr. P, his mother had been a dynamic woman, till a sudden stroke imprisoned her to her bed. A lot of the frustration she must have obviously felt subsequently was regularly taken out on poor Mr. P, as he was the only one around, and that caused him quite a bit of angst. Things got worse when his sister came visiting (which she did diligently every month or so, for a day or two) as their mother showered a whole lot of love on her daughter during those monthly visits.

Mr. P found it difficult to reconcile the fact that he did all the looking after, but was treated so badly, while his sister could just breeze in once in a while, cuddle up with mom, feel happy and go back to her life.

After every such visit, Mr. P would personally visit our store (forsaking the door delivery facility), ostensibly to collect some more diapers for his mother but really to vent his pent up frustrations. Once in a fit of rage, he said “I do all the cleaning and feeding etc., and all I get is cursed roundly”. After fuming for a while his anger subsided, and then he continued “My sister is nice. What can she do if my mother is frustrated with me? I guess it is good that she is here and amma is happy for at least a couple of days”. On our part, we were happy to be his release mechanism. After all, we are no strangers to such situations having seen similar stories play out at many of our clients’s homes.

We have a name for people like Mr. P’s sister – Non-resident family caregivers. As a class, they are usually well-intentioned and try to be as helpful as possible. They are also usually guilt ridden, being unable to participate more in the caregiving process. However, their good intentions do not always translate into supportive action. More often than not, their well-meaning suggestions come out as ill-conceived meddlesome advice.

If you are a non-resident caregiver, understand that the primary caregiver is usually under a lot of stress and hence may be a little short of patience, even though they would very much like to have all the support from you. The best way you can be a remote caregiver is to be supportive of the primary caregiver and shower them with all the love and affection you can give.

Mr.P’s sister is doing just that and we can see how that is having such a positive impact on his life. We wish Mr.P Bon Voyage and wish him many more happy years ahead!

Special parents

CompanionshipServicesI grew up in a time when people were not very politically correct or overly sensitive to the needs and feelings of others. It was very common to address people based on some physical characteristic that was prominent. The short one was usually addressed as “Kulla” (which means short in Tamil), the tall one may be “nattay kokku” (Tall crane) and the fat one “gundu” (No points for guessing right here. “Gundu” means fat in Tamil). Those were the decent nicknames. More often than not, nicknames were worse, but the worst ones were reserved for children who were mentally challeged – people who could not even defend themselves.

So, it is not a great surprise when, many years ago, I did not get the drift when somebody referred to another’s child as a special child. When I asked some other adult what was special about the child, they (quite insensitively, in line with the times) explained to me that special child was just a euphemism for a mentally disabled child.

It was only years later, after growing up and having a child of my own, did I truly understand why they are called special children. I realized that all children are special, of course, and that each one comes with a custom build character and has a unique set of strengths, weaknesses, and idiosyncracies. And that special children are special in ways that are not as common and thus require additional care and loving.

Today, I see parents of special children dealing with them with the sensitivity and patience required and succeeding in highlighting what is truly special about them. The biggest common traits I see among such parents are, one, they have all been able to truly accept their children as they are, and two, are able to calmly manage the behaviour of their special children, whether it is withdrawal on one extreme, or hyper-activity at the other.

Just as special children require our understanding and care, those of us with parents with neurological conditions need to realize that our parents are “special parents” too.
We need to accept that people with Alzheimer’s, Parkinsons, or other forms of dementia are not trying the make life difficult for their children and care givers. They have become more difficult to handle because of neurological changes and conditions that they have no control over.

Here’s hoping we all have the patience, resilience, and strength of mind to look after our special parents and ensure that they have a caring and loving family around them till the end.