My father, 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.
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. They are 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!".
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.
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!
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.
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.