Lessons from taking care of a bedridden patient for 12 years …

By William D’Souza

My mother was unfortunately bedridden for the last 12 years of her life – since end-2010 till her death in end-2022. During this time, my family was forced to learn a lot of new things to ensure the best possible care for her. Now, I and my wife, Zarine D’Souza, have been repeatedly told that we should share our experiences to help those who may end up being forced to take care of a bedridden person.

So, my dear friends, here goes… And if this is too long, it’s the very last point – no. 20 – that you should read because, believe me, it’s the most vital:

1) Get help: Of course, it’s not cheap. We started with a maid for some 10 hours for Rs 275/- a day in 2011 and by end-2022 this had shot up to Rs 500/- for only 8 hours daily. And these are just those ‘Mowshis’ you get in hospitals to bathe, clean beds and feed patients. You get them from nursing bureaus. But be warned they are not supposed to do anything apart from taking care of the patient. And if they crib about your “distant address”, throw in their transport fare and some extra fees – they may then just come around.

2) Have a nurse/medic on call: Bedridden patients may need catheters. These – and their urine bags – need regular changing. But inserting/changing takes a proper medic. So, have a nurse on call. In fact, have two, as nurses tend to be very busy and may not be free to help when you find that your patient’s bed is wet because the catheter has shifted, or got blocked or whatever. And in 2011, we were spending Rs 500/- per visit. So, my wife, Zarine, just started observing closely what nurses did and she trained herself to change catheters on her own! Now you should not do this if you aren’t sure. But be prepared for this ‘kharcha’.

3) Look for cheaper equipment: Identify wholesalers for under sheets, cotton, gloves, masks, medicines like powders/anti-septic stuff/etc and even catheters, urine bags and the distilled water to flush them. The first time we learnt this was in 2010 when an under sheet cost Rs 75/- each at the hospital. A quick check with the supplier’s address and we managed to get 100 such sheets for Rs 1,500/- total. That was a FIFTH of the MRP! And since my mum was petite, we could cut a sheet into two with each half sufficient. Even today, you may be able to buy these for at least a third from wholesalers.

4) Lease model: Don’t buy outright if you want to save funds. Whether it’s a hospital bed, wheelchair or other medical support paraphernalia, the lease model requires you to give the supplier a lumpsum amount that in most cases reduces over time. Depending on when you return the stuff, you are returned the proportionate balance. If you keep the medical equipment for long, you forfeit the amount. But it’s cheaper than purchasing it at one go. Lease model helps when you do not know how long you need the equipment for. Of course, these price models keep changing in the real market.

5) Bed/mattress options: If you can afford it, an automatic hospital bed’s fine. But a mechanical one with the hand crank served us superbly. Do not use your existing bed/sofa cause it’s tough to raise the patient for meals and then lower them again. Always go for the hospital beds. And if you are using an old mattress, ensure you get them cut to align with the section of the bed that is raised/lowered (see picture below).

Whatever you do, AVOID THE WATER MATTRESS! A litre of water weighs about 1kg. These water mattresses require about 400 litres. Who will shift them around? And God help you if it springs a leak. You will need a boat in your own home! Best is an air mattress. These cost a couple of thousands and the air cells alternately inflate/deflate to shift the patient’s body gently. But while the accompanying air pump has hooks to hang on the bed, don’t do that. Instead, put it on a stool near the bed, else the pump’s hum & vibrations may disturb the patient.

6) Exercise is vital: Lack of movement causes massive muscle loss. Legs wither away, overall limbs take on a skeletal look. So, get going on those exercise routines. Get a physio, at least initially to learn all important exercises. Of course, they also don’t come cheap. But do not ignore this requirement, at least just till you and the maid employed can learn and implement all the exercises regularly later.

7) Curse of bed sores: You can only take steps to minimise these. No. 1 requirement is turning the patient EVERY TWO HOURS, no kidding! I mean, bed sores are known to form in just one night of not moving a patient but take over a year to heal! By which time other bed sores appear if you are not careful. So simply do not take a risk – I know it’s torturous, but you just have to put an alarm to turn patients who are bedridden and ensure they are never lying in one position for more than a couple of hours.

8) Take them out! Now this is in case the patient is medically certified to be seated. Then, along with a hospital bed, definitely get a wheelchair too. If the patient can be lifted and moved, at least once a week put them in the wheelchair and take them out in the garden, or get them to be your accountant in your society’s bake sales or fairs, to get the winter sun, for those eye doctor and other medical appointments. Which reminds me – get contact details of dentists/eye-docs/etc who are nearby. Then roll towards them whenever needed with the patient in the wheelchair. It’s a nice outing too.

9) Get PoAs / Will made: Let’s face it: Becoming bedridden means just that, becoming immobile, and next of kin will have to step up to take the place of the patient in all family and legal matters. So, you should aim to have a unanimous call taken within the family as to who gets a power of attorney (PoA) and for what purpose, as soon as possible (being the only child, I ended up with some half a dozen PoAs). If the patient is of sound mind, that’s even better, because registry officials ask them if they are aware of what they are signing. By the way, get a will made too. Just ensure that all these external appointments are in buildings with wheelchair ramp / access. Else you will have to look for help to lift the patient up any stairs in case there’s no ramp / elevator.

10) Have a foldable bed table: This is multi-purpose. Not only for food but for patient’s writing, or keeping mobile/tablet for personal entertainment, etc.

11) Keep them busy / entertained: My mother was paralysed from the chest-down due to her D4-D6 vertebrae getting damaged. But she was ok till about her chest. So she fed herself and even took up my children’s studies. That was an immense help in keeping her occupied. But she was also an avid reader and fairly active on her mobile. She also loved Sudoku and puzzle books. So we got her those too. So should you for your patient.

12) Bathing: The maid would give my bedridden mother a sponge-bath daily. Then every Saturday (my offs), we would lift her from bed to wheelchair, wheel her to the bathroom, then lift from wheelchair to plastic chair, where the maid would bathe her. This was followed by the return to bed by shifting her back exactly in reverse. But the bathroom door is narrow in most apartments, and even though we widened our bathroom doorway, it was still just enough for only one person to lift mum up from the wheelchair to the plastic chair inside. That was me! Soon I got a backache, sometimes so bad that it would lay me low for two days. So, watch out!

13) Haircut / nails / teeth: Best is to do all hair-cutting and nail-cutting yourself. If the patient can brush own teeth, ensure it’s done twice daily. Else you do not want a dentist visit – either to his clinic or, if you find a nice guy by some miracle, at home – because bad oral care is just best avoided in case of a bedridden patient. We would provide my mum a tub, a glass of warm water, toothpaste and brush on the folding table. Before and after meals too she would get the tub, hot water and soap for proper rinsing instead of just a mug of water.

14) Have lots of table space near pillow / head as well as near feet: You never know when the patient requires a BiPAP machine for better breathing or a nebuliser. The pipelines are not too long. So, these need to be set near the patient only on a stool or some platform. That’s why it’s important there is lot of space, shelf or otherwise, near the patient.

15) Voice-activated /smart / remote-controlled switches: You would do well to have multiple plugs or an extension cord fitted near the patient’s bed, because you will pretty soon need lots of powered equipment like air mattress, mobile charging, breathing machines, etc. A great help nowadays is to have some smart speaker or WiFi / remote-controlled switches around for the patient to become independent in terms of not only wanting a fan on / off, but at that preferred speed.

16) Maintenance / Backups: All equipment fail. Especially since they will be working 24/7 for the patient: The coil of that air pump that came with the air mattress burns out but can be repaired. The winding of the fan on top of the patient will go, because it’s on all the time, especially if you are in a hot and humid city like Mumbai. So, keep temporary backups ready, like another air mattress or a table fan. And have your electrician’s number on speed dial just like the doctor’s, dentist’s and the nursing bureau’s. Also, take pictures of “settings” windows of all equipment and WiFi IP addresses – the BiPAP or any other hi-tech machine, the WiFI switches’ names / IP addresses to re-enter in Alexa app, etc. All hardware’s software have a nasty habit of just going kaput, especially after updates – note the important stuff to restore them yourself.

17) Power of prayer: Never ever underestimate this, especially when it comes to senior citizens, who unfortunately make up most bedridden patients. I am not talking about healing, but the faith this builds in patients and helps them in their daily activities. So, ensure that the patient knows what online sites to visit for pujas / darshans / masses / etc.

18) Get disability certificate and look at Sec 80D: It took me three years to learn about “permanent disability certificate”. And, by the time I got it for mum in 2014, it was a real painful process. The patient had to be taken to a government or district hospital, and there a head of department would examine and issue the certificate. My mum’s certificate came at a very crowded and uncomfortable (for a totally bedridden patient) Thane district hospital, but at least the doctors cooperated. She was certified 90% permanently disabled. How does this help? Well, under current tax laws, over 40% disability gets the caregiver a Rs 75,000/- tax sop per annum, and over 80% it’s Rs 1.25 lakh/-. Below 40% does not count. If the certification is not “permanent”, you will need to renew it every five years following the entire process. Some years ago, I heard the NDA government had made the process a bit simpler. You should look at this because you will be spending a lot on your patient!

19) Keep morale high: The patient WILL lose morale some day, week or month – it’s a given. When they see they are not healing or recovering, they tend to lose hope. You have to then move in and boost their morale quickly. No problem is worse than a patient losing all hope. You have to get them refocused on the big fight and motivated. Trouble is, you have to do this while motivating yourself to take care of them.

20) Take care of yourself: It’s no joke to get a call at 2-3am for a glass of milk with biscuits, especially if the patient is diabetic and tends to feel hungry at odd hours. And it’s extremely tiring not being able to go anywhere for a break if you have a patient who needs care 24/7. One way out of this is to see if you can learn to trust the maid after a few weeks of employment, and hope the patient is comfortable too, and then get the maid somehow to stay 24/7 for a week so that you can rush out for that well-deserved holiday. Of course, add the maid’s 24/7 services bill to your budget, bearing in mind that her night duty is 2X day charges! And remember how I had nearly broken my back lifting mum up every week for her bath? Please learn to find alternatives or just to simply accept it should not be done anymore, or you will be lying with the patient too in the same bed!

(This article was first published on LinkedIn and is being reproduced here with the writer’s permission.)

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(The writer is Head, Internal Communications, Content & Research, Bajaj Group. He has earlier worked as a journalist for The Times of India, Business Standard, Mumbai Mirror, The Hitavada and Siti Cable.)

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