Caregivers

Are we any close to a cure for Parkinson’s?

There is an article in Wired about 23AndMe’s quest for Parkinson’s.  23AndMe, as you know is a company that is decoding the human genome in search for patterns to help us understand diseases.

Parkinson'sParkinson’s is an incurable neurodegenerative disease that affects 1 million Americans. The biggest risk factor is age, but certain genetic mutations can increase risk too. 23andMe reports two of them to its customers, which each increase the chance of developing Parkinson’s between about 30 and 75 percent. (Sergey Brin, the Google cofounder and ex-husband of 23andMe founder and CEO Anne Wojcicki, carries one of those mutations, called LRRK2.)

But scientists don’t know how the disease works or even how much genetics play a role in its development and progression. Unlike Huntington’s or hemophilia, there’s no single genetic signal for Parkinson’s. 23andMe is betting that through brute-force pattern matching, it can map the constellation of genetic causes—and potentially inform new treatments.

To read the entire article go here.( https://www.wired.com/story/23andme-is-digging-through-your-data-for-a-parkinsons-cure/)

This is what happened to me when my parents moved in

This is what happened to me when my parents moved inJoy, frustration, irritation, adjustment, finally happiness! Getting your parents to move in with you is a tough proposition. When they finally agree to move in, it requires a change in the mindset of everyone. The initial euphoria on both sides slowly moves through difficult periods of adjustment leading both sides to question the decision. But if you persevere and remain true to the reason as to why you want them to be with you, it is very rewarding in the end.  It is far more difficult for our parents to adjust since it means giving up ostensibly their independence.  Giving the limited space in our homes, it also means giving up prized possessions so as to accommodate everyone. It also meant making the home more secure, safer and comfortable for seniors.

Many conflicts arise during the initial phase – things to keep and throw away, finance, medical, the list goes on. When there are kids involved, the demands that are placed on us as parents often lead to what we perceive as interference from our parents. To them, we are still their kids who need to be spared physical and emotional demands. This often makes them intervene directly in delicate situations which make the grandchildren resent them and us. They miss their independence and their life and substitute that with trying to be a part of what happens at home. They constantly tell us when to be home, what to cook, how to buy our groceries and how to save. The conflict arises in how we raise our kids because of very different schools of thought about food, schooling and discipline.

Three generations of mood swings happen at the same time – old age, menopause and teenage. And you have to deal with the aftershocks. You navigate your way through treacherous waters filled with obstacles.

After you successfully navigate your way through these treacherous waters and lead your family successfully, it is richly rewarding to see your parents by your side through the joys and sorrows of everyday life. At the end, I am happy they are with me.

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

criteria for finding good in-home care servicesWhat 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.

Bottom Line

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.

-Sometimes 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.

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.

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!

Transitioning from the saree to the nightgown

Transitioning from the saree to the nightgownMost elderly ladies, especially in South India, have worn nothing but sarees all their lives.  While the saree is an elegant dress, it is quite a handful to drape, even for a normal person.  But to have to drape it on another person, that too someone who is confined to their bed is not only tedious but also difficult to manage for multiple reasons.  Just imagine having to change the saree every time there is a diaper ‘accident’ and you will understand some of the problems faced in such situations.

One such story involves an 89-year-old lady. This lady had been very active until she fell and fractured her hip a few months ago.  One thing led to another and now she is confined to her bed, and dependent on her daughter for everything.  A feisty lady, the perceived loss of control of the household and having to depend on others made her very difficult to deal with.

One of the things she refused to compromise on, in the beginning, was the saree.  She insisted that she had to be in a saree all the time.  And not just any kind of saree but one of the starched and iron cotton ones that she was used to all her life.  The daughter tried gamely for a few days but was unable to take on the additional burden of changing her mother’s saree two or three times a day.

She then bought nightgowns from us, but her mother refused to even consider them, even after she was given a wide choice of designs to choose from.  Finally, the mother and daughter had a big showdown at which time, the daughter reduced the choices to grey hospital gowns and our special design Cocoon nightgowns.  The mother finally relented and decided to go with the nightgowns, for she abhorred the dowdy hospital gowns, which she felt made her look and feel even sicker than she actually was.  Needless to say, the mood in the house subsequently went downhill.

We came to hear about this story when the daughter, the primary caregiver came to buy some more of our specially designed back-open nightgowns for her mother.

With dark circles around her eyes, hunched shoulders and a resigned look, she appeared to be at the end of her tether.  On gentle probing, she confided that she felt that she had let her mother down as she could not even meet the simplest of her wishes.

Once she narrated her story, we took a leaf out of another customer’ story (similar beginning, but a different ending), and suggested the following:

1. Have specific visiting hours for her mother during which time her friends and relatives can come and visit her.

2. Get the mother dressed in a saree for the those visiting hours, so she can receive her visitors the way that she liked – prim and proper in a starched cotton saree.

A few weeks later, the daughter came back for a few more of our nightgowns.  She seemed to be in a much better mood and was happy to share with us that our suggestion had worked very well and both mother and daughter were very pleased with the arrangement.

“Now that my mother has got used to wearing nightgowns, she finds them very comfortable and elegant.  She has sent me here to get some more, with clear instructions to get pastel shades because that is what complements her complexion”, she said with a throaty laugh.

On our part, we are very happy to have contributed in making the life of another care recipient and that of the care giver just a little bit better.

What qualifies someone for hospice?

hospice

Definitions:

Hospice

A home that provides care for the terminally ill.  Cancer patients in their last stages and others who have six months or less to live, benefit from moving into a hospice as the hospice is geared to take care of their needs and ensure comfort and care.

Palliative care:

Palliative care refers to treatment given not towards curing an illness, but towards keeping the patient comfortable and pain free.

Looking after a loved one who is terminally ill is one of the toughest assignments one can have.  Firstly, unless one is a nurse or a doctor, one is not fully qualified for the task at hand.  Secondly, if the loved one is suffering, watching them from close quarters can be really traumatic and both emotionally and physically draining.

Under such circumstances, opting for hospice care may be the best thing one can do, for oneself and for the patient.  A hospice is geared to look after the terminally ill and will be able to keep your loved one as comfortable as possible.  In addition, many times, they will have licenses to procure and prescribe pain killers such as morphine, that are not available to others.  On top of that, this will give you the opportunity to spend quality time with the loved one rather than constantly worrying whether one is doing enough for the loved one.

In India, there are quite a few charitable organizations that run palliative centres.  Most of these however cater to the poor and destitute. They do the best that they can but given that they are charity run and are invariably filled beyond capacity, they may not be suitable for those that are willing to pay for better quality services.

Searching on google for “hospice”, “palliative care”, “terminally ill care” and similar words along with the name of one’s city will give one a quick overview of the available options.

It is important to remember that considering the option of hospice care for a loved one is not an act of abandonment, a sign that one is relinquishing one’s responsibilities or dereliction of duty.

Under such circumstances, it may be the right thing to do for one’s loved one.

Wheelchairs and air travel

Wheelchairs and air travelI recently took my mother-in-law to Mumbai for a family wedding. While she can walk a bit, she finds standing for extended periods and walking long distances very painful, so I ordered wheelchair support for her at the time of check-in.

The Indigo airlines people (MAA-BOM) were very kind and helpful. They came and found us even before we reached the check-in counter and got her comfortably seated in a wheelchair. They then took her through security and ensured that she reached the gate well before flight time. They then came back at the time of boarding and made sure she got on to the plane before anyone else and was seated comfortably before the rest boarded.

Similarly at the Mumbai airport, after everyone had disembarked, they brought a wheelchair through the aerobridge and remained with us till we got into a pre-paid taxi. The person manning the wheelchair even took her to a disabled toilet before we got into the cab. He remained patient, courteous and kind throughout.

Our return was by Jet airways. The embarking process went smoothly with the wheelchair available to my mother-in-law from the airport entrance itself all the way to the aircraft. I was extremely happy with the service and it made my mother-in-law’s travel much less of an ordeal than it could have been without the wheelchair support provided by the two airlines.

At the Chennai airport, after the flight landed, we waited for everyone to disembark and then started to move forward towards the aerobridge when a flight attendant announced that wheelchair users should use the rear exit. We turned around and went there only to find a flight of steps down (no aero bridge). When we protested, they said please get down the steps and we will get you a wheelchair. So we helped her get down the steep stairs which she managed with a lot of difficulty. At the bottom, they said, please get into the bus and we will get you a wheelchair at the terminal. It was just another 20 meters and she was game, so we did not think too much about it. However, getting into the bus was something else! The first step of the bus is a good foot above the ground and she really found it difficult to climb in. Finally, my wife and I literally lifted her on to the bus while the ground crew stood around watching.

Not surprisingly, at the terminal end, there was no wheelchair waiting for us. We got her down from the bus and started making our way towards the baggage carousel. Just as we were almost at the carousel, the wheelchair finally arrived. As a saving grace, the attender stayed with us all the way to the pickup location a good 200 meters from the arrival hall.

When it comes to accessibility services, we are almost there, but not quite yet. The strength of a chain is that of the weakest link. Similarly, the final quality of the service depends not so much on the parts that you do well, but on the places where you drop the ball. In this case, the disembarkation process at the Chennai airport was a disaster in terms of service. Jet airways needs to take note and improve on their service.

I will be writing to them about this so they can really consistently do their job well. If you have a similar experience, please make sure you write to the concerned authorities so that they can improve upon their services. If we don’t tell them, how will they know they need to improve?

Towards a strength-based approach to elderly care

strength-based approach to elderly careA strength-based approach rather than a deficit-based approach towards ageing could well have an empowered senior citizen stepping into a journey of a “well-being” experience.

Strength is a capacity – a talent, ability, skills or multiple intelligences; whereas the deficits are the physical hurdles of old age that bring about various disabilities.

Kalpana Goel from School of Psychology, Social Work and Social Policy, Whyalla Campus, Australia, who was in the city for the ‘Healthy Ageing’ conference organised by the Rajagiri School of Social Sciences, said that “well-being” is not just a physical experience, but a “happy” state of mind and body.

The idea was explored by Vanessa Leane of St. John Ambulance Australia and Dr. Goel in a project that focussed on the strength-based approach to the older people.

“The idea was to generate the identity of the senior citizen in his or her strengths… to explore their strengths that they had accumulated by virtue of their lives,” said Dr. Goel. If their strengths are used as a resource to generate well-being, it removes the barriers created by the frailty of old age, environment and other constraints like lack of support or care. Their strengths, which make them happy, get buried because of loss of hearing, loss of spouse or loss of a close friend. The new digital world could be used to help them bring back their strengths, she said.

The governments should work out community programmes to explore the strength-based approach to well-being that would help the elderly give back to society the goodness they had accumulated.

Society should recognise the value of the strengths of the elderly, instead of focussing more on the physical needs of the ageing body, said Dr. Goel.

Society should recognise the value of the strengths of the elderly

Also, society should recognise the value of the strengths of the elderly, says Kalpana Goel from Whyalla Campus.

Click here to read the original article.( https://www.thehindu.com/todays-paper/tp-national/tp-kerala/Towards-a-strength-based-approach-to-elderly-care/article17011199.ece)

Choosing the right wheelchair

Choosing the right wheelchair for an elderly relative is a non-trivial activity. Wheelchairs come in many shapes and sizes, in many different materials, and designed for different uses.

Here are 15 questions for which you need to know answers in order to decide on the right wheelchair.

Is it for indoor use or outdoor use?
If it is for outdoor use, ensure that the back wheels are big. This will ensure that the wheelchair can take the ups and downs of Indian roads and platforms.

Is it foldable?
Most wheelchairs are foldable. Since wheelchairs are stored away for much of the day and through out the night (in the case of seniors), a foldable wheelchair will occupy less space when not in use.

Will it fit into my car boot?
Sometimes, you may want to take the wheelchair with you. In such cases, it is important that the wheelchair folds into a compact size so that it can be easily stowed away in the boot or back seat of the car. 

Are the armrests removable?
Removable armrests help in sliding from bed to the wheelchair and back. This can help if the user of the wheelchair is capable of moving sideways, and the bed and wheelchair are at almost the same height.

Are the footrests removable?
Removable footrests ensure that the wheelchair folds into a smaller place as well as help in making the wheelchairs less unwieldy while transporting.

How heavy is the wheelchair?
Sometimes, the person helping the user of the wheelchair may also be a senior citizen. In such cases, it is very important that the helper is able to lift and maneuver the chair. where possible, buy a lighter wheelchair.

How much weight can the wheelchair bear?
A typical wheelchair is certified for about 100 kilos. In the case that the user is much heavier, go for a bariatric range wheelchair.

What are the dimensions of the wheelchair?
In many homes, the doorways and passages can be very narrow. The bathroom doors, in particular, are usually only 2 – 2.5 feet wide in many Indian homes. Before purchasing the wheelchair, ensure that the wheelchair is able to go to all the places you plan to take it to.

Self-propelled or attendant chair?
A self-propelled manual wheelchair will have large wheels while an attendant wheelchair may have smaller wheels and brakes for the attendant to use. Choose depending on usage. If the person using the wheelchair does not have enough strength to propel themselves, go for a wheelchair designed for attendant use.

Is it for transit purposes?
If you are planning to use the wheelchair only during travel (at airports and railway stations, etc), then go for one of the very light-weight, compact aluminium transit wheelchair models.

Is reclining an option?
Some wheelchairs allow for reclining. These usually are larger and take up much more space. If a person is going to be sitting in a wheelchair for long periods, the reclining option may be useful.

Will it rust?
Wheelchairs come in different materials from mild steel to high-grade aluminium and other alloys. If you are planning to take the wheelchair into bathrooms and toilets or expect it to come in contact with the elements, go for an aluminium one. Chrome plated wheelchairs tend to rust after a while. 

Motorized or manual?
Unless you are living in a high-end gated community with smooth roads and pavements, there is usually very little value in going for a motorized wheelchair in India as most places are not conducive for motorized wheelchair use. Needless to say, Indian roads are not safe for motorized wheelchairs.

Is a commode attached?
A few models of wheelchairs come with commodes attached, so they act as portable commodes as well as wheelchairs. Under most circumstances, it is preferable to keep the wheelchair and the commode separate for various reasons. However, if you need them together, know that such models are available.

What is the cost?
Wheelchairs, like most other things, come in different price brackets. Choose one that fits your budget.

If you have more doubts, write to us at info@oldisgoldstore.com