What I learned in helping my elderly father navigate the transition from totally independent human being to end of life care in 2 months or less:
Being in control of another human’s life choices, all of them, is a responsibility too great for one person to bear, especially if that human is a family member.
Being in the hospital all the time for months on end is not good for anyone’s health, not even a really healthy human.
For an elderly person who is very sick in the hospital, things can deteriorate exponentially fast. Light-years happen in minutes.
While you are in the hospital, being a caregiver in the hospital, especially when you are nearing the “possible end of days” and you sometimes start to feel short of breath, your stomach is in knots, you can’t control the tears streaming down your face and you don’t know how you’re going to make it past the next few minutes- life goes on normally outside of the hospital. Your friends still go out to happy hours and go dancing and have fun. Life continues. Bills are due. Library books are due. Your children have to magically be taken to and from school every day. Your house plants still need water. Your car still needs gas to take you places. You still have to figure out how and what to eat for dinner for you and your family. It’s strange but true. The world keeps spinning outside regardless of what you are experiencing inside.
Having a doctor in the family helps navigate the “backstage” part of the hospital issues. Even if your “doctor in the family” is not of a specialty you might need. It still earns him “med cred” and if you’re lucky, your attending hospitalist might even extend the courtesy of sharing chart information with your family member. Who can then translate the reality of the situation to you instead of the garbled vague things the nurses have been telling you.
Charge nurses, nurse managers, and social services can either make or break your deal.
Insurance dictates what kind of care and what length of care your family member will have. Not medical necessity. So if your family member made a crappy choice of insurance providers, it may be up to you to clean up the mess and pray you have time to reverse some of the damage.
“Skilled Nursing Facility” often is a euphemism for “crappy nursing home” if your family member belongs to said crappy insurance plan.
When things start to get really hairy, suddenly you’ll see lots and lots of white coats coming in and out of the room often throughout the day, many not telling you much but handing you business cards saying “if you need something don’t hesitate to call” without bothering to tell you exactly what it is they do or how they can actually help you.
Most of these white coats are just covering their asses and really don’t give (much of) a shit about your family member. But sometimes if you’re lucky, 1 or 2 will, and will actually show you compassion and give you a glimmer of useful information.
You will learn more medical jargon in this short time than in your entire lifetime. And if a nurse of doctor uses a term and you don’t know what it means, pretend you do so you can get the most information possible, you appear informed, take mental notes, then google it later. Or call your family doctor person.
When you get home at the end of the day, you can never get the hot shower hot enough to shake off the hospital coldness.
It doesn’t matter that you look like shit, your hair hasn’t been washed or brushed in days, or your clothes don’t match. If you’ve managed a (somewhat hot) shower, to breathe, and a few minutes of meditation- you’re golden.
Some I.V. antibiotics smell like fish, and it’s nearly impossible to get that stink off.
Your cellphone battery drains exponentially faster in the hospital room and there is never an outlet that is not colored “DANGER RED” within easy reach for you to plug into.
The people you imagined would be helpful to you sometimes are not, and the people you never would have thought would rally around you or for you will.
5 year-olds are still 5 year-olds and will have melt downs, often, even though you don’t think you can handle another thing.
Your 5 year-old will suddenly get up multiple times a night again, not allowing you a solid night’s rest.
Both you and your 5 year-old may feel energetically linked to your ailing loved one, sometimes literally feeling the same pain they feel in the same places, and at the same time they are experiencing it. Which often happens at night. So again, you can’t sleep.
When you think you can’t handle 1 other thing, 3 other things will pop up at the same time and you will find the strength and resilience to somehow manage it.
Running around being Power of Attorney and taking care of all manner of other non-medical things that are urgent regarding your family member will sometimes bring you a strange sort of peace, because it means you don’t have to sit in the hospital room watching them wither away, at least not for those few hours.
This event can bring you closer to your spouse than you ever thought possible.
Family is family, and when it comes together in times like these, it’s a beautiful thing.
Slowly losing a loved one is damn hard, but slowly losing your own life must be even harder.