20 Tips For Caregivers - Making Hospital Stays Easier

22 July 2016: Anna at Neptune Hospital

Anna, who has Parkinson's Disease, Dementia, and Diplopia has been in the hospital since 20th Jul 2016. He needed emergency hospital care when he stopped eating while battling viral fever. Within a few hours he was diagnosed with aspiration pneumonia. He was on 24-hour oxygen support for 5 days. The IV fluids continue as he is eating enough to keep a sparrow alive, barely!

Here are lessons learnt from this and other medical emergency experiences. I hope these will help you if you are a caregiver too. Remember, some of these learnings may be valid only for India and/or only for caregivers of patients with degenerative diseases.

Photo Courtesy:
www.bbc.com/news/health-19989167

1. Have THE conversation on end-of-life preferences and care. It is hard to ask a parent what kind of interventions / care they would like at end-of-life. However hard it may be, have the conversation. A deep detailed conversation. Anna is clear he wants no cardio-pulmonary resuscitation, and no tubes to drain his lungs or feed him. We have talked about how this would lead to more suffering, but he says he does not want to die hooked up to a machine, nor does he want life to be prolonged by drastic interventions. He wants a dignified exit.

2. Tell the people who need to know. About the patient's end-of-life choices. I have had detailed conversations on the possible progression of his disease and what it can result in.  I have let his doctors know what he would like done and not done, with Anna in the room. I have tried to be as detailed as I can, so that his doctors know exactly what is and is not acceptable. I have also communicated Anna's wishes to the immediate family. In India, this can mean in-laws, uncles, aunts, cousins, etc. I don't want to hear criticism and second guessing decisions that are my onerous task to make and not theirs. 

3.  Abide by the patient's wishes. It is a sacred covenant. In an emergency, you will be asked time and again to take medical decisions. I just stuck by what Anna wants even tho' I die a little inside, knowing that this could be an end-of-life situation. Everyone, from medical staff to the attendants and the neighbours have a point of view. Some repeat themselves ad nauseam - I stick to my guns and tell them I am abiding by Anna's wishes / instructions. Once I have been forced to tell someone to just "stop it!".

The Ramp into Neptune Hospital
 Navjivan Vihar, New Delhi

4.  Identify the hospital for emergency care. We prefer to take Anna to a small nursing home because we like the doctors and it is nearby. The doctors are nurturers and healers. They may not have all the specialists that one sees in big places, but we don't want all that.  We want a place where Anna and we are comfortable, where we are listened to. 

   

5. Keep a hospital bag ready. A bag with all the essentials - clothes, towels, diapers, toiletries etc. In an emergency, it's easy to pick up a bag. Even if the hospital you choose provides all these things, I would still recommend a bag as it will have the things that the patient is comfortable / familiar with - from the taste of the toothpaste to the feel of the body lotion.

6.  Keep medical papers organized (and in another bag). File papers (prescriptions, results of tests and investigations, etc) chronologically. Sometimes this is an issue when you see more than one specialist as they don't like to flip thru "other doctor's papers".  I don't bother about this. I just think of Anna and me as the customer and do what makes me happy.  I have 2 major categories - one is Anna's neurologist and then the others.

Red Cross Medicine Box

7. Make a cheat-sheet of medications. Specially if the patient takes medications from more than one doctor. I created a cheat sheet to help me fill Anna's pill boxes. Every time we have taken Anna to an hospital emergency room, the intake / resident doctor have used the cheat sheet to fill in his chart or change medication / dosage fast.

8. Keep strips of medication available. When a patient is brought into emergency, after understanding the medical history and current medication, some medication will be stopped in an attempt to stabilise the patient. Then medicines will be re-introduced into the system. At this point the nursing staff may need only 3 of the 15 tablets a patient takes. I keep at least one strip of each medicine available so that I can pull out and give the nurse what is needed at short notice.

9. Ask questions of medical staff. You need to know what is happening, and why. Ask the doctor questions, and as many as you want. Don't feel guilty about keeping a doctor from other patients, your patient is also important. Ask questions of the resident doctors and nurses. When I get similar answers from all of them, it gives me confidence. Also, it helps me answer questions from well-wishers.

10. Bribe the patient shamelessly. I tried all I could to get Anna to eat. All his medication has to be taken orally, and hence we had to crush pills and mix it with a teaspoon of soft food / liquid for him to ingest. Getting him to eat was difficult till I bribed him with custard, mashed banana, blitzed mango,  upma, halwa, sprite, green coconut water, etc. and voila! he started to eat.

11. Expect the unexpected. When a person has Parkinson's / Dementia they regress to behaviours that you may not have experienced before, or have not experienced for ages. Anna did not recognise me or Sanjiv (my husband) or Vikram (my brother) for days. He repeated whatever was said by the attendant. He spoke to me in Tamil. Even tho' I have bribed Anna with his favourite foods, he has now stopped eating.

12. If the patient has attendant care, bring them to the hospital too! This does two things for the patient and you.  For the patient, when they are conscious, they see familiar faces. Attendants also understand facial cues, and can meet unsaid needs of the patient. They can also turn the patient hourly, and massage them to prevent bed sores. As a caregiver, I am not chained to the hospital 24x7. I can go home for a hot meal or a shower or a nap or to see a friend. I need a break from care-giving even when the patient is in critical care!  

From the series Stone Footprints
by Scottish photographer Iain Blake

13. Define your concentric circles of information. I can't tell everyone every thing.  Also, I don't want to tell everyone as soon as hospitalization starts for there are too many such incidents. I have defined who needs to be in the know immediately, and updated consistently, like spouse, siblings, etc. 

14. Identify hubs for update dissemination. Making or receiving calls from each aunt or cousin to update them is a pain.  Not all of them are on WhatsApp groups. So I talk to a few people and ask them if they are ready to be hubs of information dissemination. They normally agree readily. I then don't have to pickup or return a call from someone who is in someone else's circle of communication.

15. Create the "one email thread update" list.  This is for people who are in the immediate circle who need to be informed in detail and consistently. Sending one email is so much easier than calling and repeating myself again and again.  It is also less depressing and expends less energy.

16. Let immediate family choose whether they want to see the patient at end-of-life or not.  Let people know the situation and let them decide. Telling them they have to come, means I have come to the decision that it is definitely end-of-life and this stage is hard to determine.  Also, people may want to remember the patient as a healthier, more independent person, than the weak, debilitated individual in a hospital bed - I'd rather let them choose to have the memories that they want.

17. Share the burden: I suffer from not being able to do this.  There is the feeling of loss of control when I share the burden. But I am learning to do more sharing. Siblings, spouse, friends can help add to free time. I have to learn to call on them and use them shamelessly. They have offered selflessly. I haven't accepted their offers.

18. Beware of comfort eating. Worry makes me wanna eat. Eat, when hospital stays can be very sedentary for the caregiver. And eat unhealthy "canteen" or "dhaba" food. I carry a little container of nuts in my bag. They help keep hunger at bay till I can get something healthier to eat. Healthier, not necessarily healthy. I'm also going to try carrying saunf.  

Photo Courtesy
www.unl.edu

19. Stick to your regular exercise routine. I went for my thrice-weekly yoga class. Having an attendant with my father helped. But more importantly, the exercise class gives me the feeling of normalcy. Actually, I'd say, stick to your routine, whether exercise, or eating, or sleeping, or TV watching. When a person is in hospital, under expert care, there is not much you can do hanging around.

20. Create a bill file. You will need it to file claims. It is better to be organized from day one than later. I love plastic folders.  You can just dump in bills or put them in a sorted manner. And they stay together. I also keep a small notepad and pen in this file.  I then have something to write on when a thought or question crosses my mind.

Anna is still in hospital and not getting any better.

Feel free to add points to this in the comments section.  I'll keep this list updated on the Caregiver Tips page of this blog.

That Sound of Bubbles Escaping to Freedom

Photo Courtesy: www.ivillage.ca

If you like water, then you will understand when I say that one of my favourite sounds is that of bubbles. Bubbles forming and escaping to freedom through water.

As a child I remember sticking my head under water, releasing air from my mouth and feeling the bubbles with my hands as they rose to freedom from my lungs.

Photo Courtesy: www.youtube.com

The first time I realised that bubbles can be caused by other parts of the body was when one of my many swim-mates teased me about bubbles from my bum! You got it! Bubbles formed by farting underwater. And even tho' I denied it vociferously, I was teased by one and all. Now that I am older (much older!) and wiser, I realise that these swimming mates must have farted themselves in the water to know that bubbles can be created that way too!

I also remember how natural it felt to put an empty bottle, mouth first, into a bucket of water, and tilt it slightly to release the air trapped in the bottle, to form bubbles. I was the saviour, releasing them to rise to freedom. That plop-gurgle sound is the sound of fun.

Photo Courtesy: www.chicagonow.com

The sound that you get when you blow air thru a straw into a glass full of juice or milk. Blub-plop-gurgle. Blub-plop-gurgle. The dance of the bubble tribe!

What does this have to do with Anna?
A lot.

As I shared with you, Anna has been losing weight over the last 10 months even tho' he is eating OK. His energy levels are low. His breathing laboured after the most minimal of movements. Then the poor man gets viral fever and cold.

10 Jul 2016
Before the Viral Fever
At Saket Select Citywalk
Photo: Mamta Murthi

My sister who is here for 10 days, to give me some respite from my father's care-giving responsibilities, monitors his viral fever like a hawk. Hourly temperature is taken and recorded. Cold compress on his forehead, hands and feet is used in-between Crocin doses. Steam inhalations are done three times a day, to the tune of Anna's whimpers of "Aiyoo-Amma"!

When I talk with the doctor, he tells me to bring Anna to the hospital if he stops eating, and that the viral will have to take its course.

Anna's food intake becomes smaller and smaller.  A man who normally eats 4 idlis for lunch, eats only 1 and a bite. He refuses to eat roti or the peas in his upma.  On 20th, he manages to drink 2 half-glasses of lassi, barely enough to keep a small pet alive. So, on the day my sister leaves, I take him to hospital.

He is breathing heavily. There is no to little response to questions we ask. His BP is OK and he has a low grade fever. His lungs are congested. We admit him and he is put on an IV. After settling him down, we return home.

I just have time to have a shower and eat something, when I get the dreaded late night call from the attendant. "Please come. Anna is not doing well."

Sanjiv and I rush to the hospital. On our way we get a call from the resident doctor telling us that Anna is critical and to get to the hospital fast. Even at this time of night, the traffic prevents us from reaching there quickly. Fear and frustration are intertwined.

22 July 2016: Anna at Neptune Hospital

I run up the stairs to Anna's room. There are so many people there! Doctor, ER Nurse, Floor Nurse, and Attendant.  The doctor tells us that pulmonary aspiration caused his breathing to become laboured, heart rate to skyrocket and oxygen levels to fall to dangerous levels.

Anna is on the bed, his nose and mouth covered by an oxygen mask, a monitor beeping his heart beat. Out of Anna's mouth comes the sound of bubbles. Bubbles struggling to escape. Every heave of his weak shrunken chest is accompanied by a dull gurgle, and ever exhalation  is the sound of bubbles pushing past thick viscous fluid. It is a horrible sound.

Not a sound, but a horrible long lament of lungs desperately trying to take in and hold air. To just breath.

Now the sound of bubbles do not bring me fond memories of childhood or of teasing farting mates in a swimming pool. They are no longer fun, or comforting.

Anna's O2 fell below 60% and his BP shot through the roof.

He is on IV fluids and oxygen. 

He is unable to swallow more than 2 half teaspoons of water.

We have been unable to wean him off external oxygen support.

Anna's Legendary Tolerance Of Pain

It seems that genes play a role in pain perception. If that is true, then I inherited my high pain tolerance from my mother. It isn't a good thing to inherit, for pain is often a warning signal.  I completely miss these signals, till they become strident and unbearable.  Doctors ask me how I didn't realise I needed medical attention. What can I say other than, "I didn't feel any pain"?

Anna, on the other hand, comes from a family where pain tolerance is not that high. 

My earliest recollection of Anna's tolerance of pain was sometime in the late '60s. We were in Port-of-Spain, and before our first home-country trip we had to have shots, immunizing us against Cholera, Typhoid, and anything else the World Health Organization insisted on.  

School uniforms at Dunross Preparatory School 
look nearly the same after over 40 years

Amma prepared us by telling us that we had permission to leave school early as we had an appointment at the medical center to get shots that would feel like a "small ant bite". My brother was made to wear a new vest under his shirt and my elder sister was told to carry a without-sleeves blouse. My younger sister and I were in school uniforms that anyway had no sleeves.

We reach the Caribbean Medical Center at the appointed time. Six of us sit on a wooden bench, my father at the head and mother at the tail. Anna turns to us and asks us who wants to get the injection first! Before Anna can choose the last slot, Amma says she will be the last to get a shot, so that she could help us when we have ours. None of us kids wants to be first and we looked significantly at our father, expecting him to be the big brave man and go first.  Anna suggests that we get our shots in order of our ages, youngest to eldest, successfully sidestepping our pleading looks, and Amma's choice, deftly.

And so we did.  Anna drove us home, in the middle of a school day. We played frisbee in the garden and Amma made us treats. Anna retired to bed, saying he was going to get a fever!!

Getting our shots in reverse order of our age became the norm in our family.

Vaccines for life

There were many instances throughout our childhood and youth where we would laugh at Anna's resistance to pain, and tease him about it.  It just wasn't his own pain that he couldn't stand, it was also ours! I remember falling down the stairs on two occasions and needing stitches.  Anna drove me to the hospital, but refused to be in the room while I was being stitched up. Anna even refused to be in the same room when my niece's ears were being pierced!

Fast forward to 2014.

When I delve into Anna's medication in the US, I realise that he has been prescribed 2 tablets of Acetaminophen 325mg per day.  That's a high dose of pain killer to take on a daily basis. Over a period of time we have worked on reducing it to zero. Anna only takes it as an SOS.

I meet him one evening, after days of not being able to communicate with him properly thru' his disorientation and somnambulance. 

Anna is tired

Me: How are you, Anna?

Anna: I am OK now.

Me (frowning, not understanding what he means): What do you mean now, Anna?

I get no response. So I change tack.

Me: Anna, were you feeling unwell before? Earlier in the day?

There is a long pause. Then.....

Anna: You know; I was in excruciating pain this morning?

Photo Courtesy:
www.alltechmed.com

Me: Really Anna? Why didn't you take a painkiller? You can take up to 2 Acetaminophens if you are in a lot of pain.

Anna (referring to the attendant): He didn't give me medicine.

I ask the attendant if Anna had asked for a painkiller and he tells me that Anna hadn't.

Me: Anna, did you ask Manish for a pain killer?

Anna: No.

Me: Why not? You shouldn't suffer if you are in serious pain. You know you can ask for painkillers whenever you need them.

Anna: Yes.  Pause.  I couldn't remember the words for pain or the medicine. So I just kept quiet and stayed in bed.

I cry a little inside!

A Caregiver's Challenge

Neptune Hospital, Navjivan Vihar, New Delhi

The last 10 weeks have been challenging to say the least. We've been to the hospital innumerable times and spent so much time there that if Neptune Hospital had been a country, we could apply for residency status!

Not just with Anna but with everyone in the family.

My father-in-law (91) was treated for a skin infection. Now his old back injury pain has raised it's ugly head with the humid and moist weather.

My mother-in-law (80) continues her 8-week battle with a urinary tract infection. And 2 days ago, one of her teeth thinks it's had enough and decides to drop off.  So we add a dentist and dentures to the many health-related issues and people we have to visit.

The ramp into Neptune Hospital

Not to be outdone, my husband's intestine and colon assert their importance.  They start with fissures and add hemorrhoids, openly mocking the allopathy and homeopathy drugs he is prescribed.

And just in case things weren't hectic enough, my father's housekeeper is diagnosed with non-contagious TB that needs aggressive treatment. And of course he is allergic to one of the medicines prescribed and we have to treat the allergy too!

And with all this happening simultaneously, I start to notice that Anna is slowing down dramatically. Lethargic, sleeping more, often non-responsive, moving and walking much less. I first think that it is the heat and then dismiss the idea as Anna is in air-conditioned rooms most of the time. Then he starts to collapse, becoming loose-limbed and dead weight without provocation. I take him to his GP. We do all the blood tests needed, and find that everything is OK. So next stop, neurologist.

30 Jun 2016: 2 days after his birthday, Anna is 90%
asleep when I try to get him to cut a cake

Anna's neurologist says his Parkinson's has progressed. So we increase the dosage of Syndopa (Carbidopa-Levidopa) and add medication to make him more alert.

Anna gets worse. Much worse. All his symptoms get worse and he is delirious. We rush him back to his neurologist, who stops all additional medication saying that in all probability Anna may have reached the max dosage of Syndopa his body can take.

Anna pretty much misses his 88th birthday. It takes over 4 days for the effect of the additional / new drugs to wear off.

Anna has coffee and quiche
at Barista, SDA Market

After 3 weeks of not being able to take him out, he is conscious enough for us to go to Barista for coffee on Sunday. The highlight of our outing is a stranger gifting Anna dark chocolate, saying it is good for him.

This morning for the first time in more than 3 weeks, he is awake and eating his own breakfast (vs being fed).

Me: Good Anna! You've had your own breakfast today.  Pause. What did you have?

Anna (his eyes are closed): Upittu (Upma)

I look at his bowl and from the one bite left I can make out that it is not upittu.

Me: Anna, it's not Upittu. It is Vermicelli. Vermicelli in sweet milk.

Anna: Oh.

I then notice that he is drinking the litchi juice I bought. A change from the standard orange / apple / guava juice he normally has.

Me: Anna, do you like your juice?

Anna: It's OK.

Me (not sure if he is really awake and aware): Anna, do you know what juice you are drinking?

Anna: I am still doing research on it.

We share a chuckle. His eyes stay closed throughout. We take him back to bed.

We now have to wait a week to take Anna back to the neurologist to see if we can do anything to improve his quality of life.

I am tired. Just tired!