“Childhood is what you spend the rest of your life trying to overcome. That’s what momma always says. She says that beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up. And it will, too…” ~Hope Floats
New beginnings. And I am just trying to let hope float up. That is where I am this morning.
After Ma passed away, when I was standing back in my office in NYC, I had my first true regret in life – that I was not more present at the end of my Ma’s life. The week before she went into the coma, she called me and said, “I miss you. I wish you could come home right now.” If there is anything I would change in my life it is that I did not get up from that desk, catch the LIRR to East Rock, pack my bag and rush home immediately. We never know how long we have with people. And there is no job, no career, no hobby in life that (in retrospect) will be worth losing precious moments with people who matter the most to us.
In August of last year, I was at a “new beginning”. I had moved in with my (then) boyfriend (now husband). We were living two hours away from my old house, from my Dad. I received a call from Dad saying that he didn’t feel well. I encouraged him to go to the VA to get checked out. He had pneumonia. Next he had double pneumonia. Then, two weeks later, in the middle of the night, Alex called and told me Daddy was sitting at the kitchen table, unable to breathe. I drove to the house, picked him up and was immediately blown away by how sick he was. That was our first stint in the ICU. From there we went through A-Fib, Amiodorone, Digoxin, congestive heart failure, onset of kidney failure, Dabutamine, heart cath, nuclear heart scan, three ICU stays totaling over 50 days, COPD, blocked LAD, open heart surgery, coma, cardiac arrest, hypoxia, 23 days in Hunter McGuire, 75 days at Huntington Health and Rehab (never, ever, ever go there or take someone you love there), introduction to Ritalin and finally (as of today) 197 days at Overbrook Rehab Center – that brings us to this morning, the day I pick my Dad up to drive him back to Fayette County, to his house and his pup Max.
Yep, you read that right. I am excited and happy for him that he is able to return home but filled with extreme trepidation. So, I am trying to let hope float up. It has been a very long year. And Daddy has come a very long way.
What have I learned during this craziness?
1. Patience: Whether you are good with it or bad with it, you have to have it. The human body will not hurry up and get better just because you are antsy. It will also not do what you expect it to – healing in some places that makes no sense while getting worse in other places that should not be effected. I still have not perfected the art of self-patience. Most of mine was forced upon me.
2. Question Everything: When dealing with the health of a loved one, leave no questions hanging. If you don’t understand a procedure, ask for it to be explained. If you don’t understand why they are giving multiple medicines that all seem to do the same thing, ask about interactions and why “cocktails” of meds are given. They have to have a reason for everything they do, you cannot ensure the best treatment for your loved one unless you understand those reasons.
3. Doctors Are Not God: My parents grew up in a generation in which you did not question your doctor. You just did what they said. If you feel that your doctor, nurse, facility (etc) is not giving your loved one the best care possible – change the circumstances! Change the doctor, move your loved one, confront the nurse who has not cleaned the piss out of the floor after three hours. Situations in the medical field are generally not set in stone unless you chose for them to be.
4. Research, Research, Research: If you have internet access (like 99.8% people in the greater U.S. – you can go to the library to use theirs if you are the .2% who do not) – look up the meds your loved one has been prescribed; read about the diagnosis; read up on the various treatment plans, diets and meds associated with their ailment; read reviews on the facility where they are being treated or the doctor doing the treatment; and most importantly – make sure you are referencing legitimate websites. How can you do that? Almost every ailment has an association that pulls together resources for those affected by it. For me, I used the American Diabetes Association’s website. There was a ton of information there. If you do not know specifics, use sites like WebMD, Mayo Clinic, Health Central, Wrong Diagnosis – they will reference other sites, definitions of ailments, treatment ideas, etc – from there you can usually access more specific websites. Just because a website is Google-able does not make it legitimate. Ask your doctor if he has pamphlets. Most all pamphlets on ailments have reference sites. The more you know, the better you can make decisions.
5. It is ok to take a minute for yourself: While in Richmond, at Hunter McGuire, we were not allowed to see Dad until 11AM (per CICU rules). So, my sister and I explored the city. It allowed us a moment to breathe before diving back into the serious issues at hand. It is perfectly fine if you need a moment to breathe. In some situations, if you are the primary caregiver, the one making the big decisions, it is better that you are able to organize your thoughts. Sometimes that involves stepping away from the situation for just a few minutes (go get a cup of tea in the cafeteria, take a walk around the courtyard, go upstairs to the peds unit and look at the babies through the glass).
6. It’s ok to be pissed: Believe me, I have had my fair share of days being pissed. First at Dad, himself, for allowing himself to decline in such a way (not managing his sugar, smoking for 50 years, eating only microwavable foods or dinners at grease pits). Then I was pissed at doctors (especially ones that dismissed me and told me “Jesus wept” in response to asking about my Dad’s continual weeping). I was pissed a lot at “family” (people who I reached out to for help and who told me no to my face and when I discounted them from those points on, got their panties in a wad). It is ok to be pissed – it is natural. Just do not let it overwhelm you. Unfortunately, on a handful of occasions (mainly with family who were partially present but told the world they were wholly there), I was unable to reign that in.
7. Keep a journal: If it is a big, life changing event – keep a journal. You will thank your lucky stars for it too. Go out and buy a cheap $1 single subject spiral notebook. Write down things you think are important (even if other people do not see the same importance). Write down meds (and research them later). Write down diagnosis (ask the doctor to spell them for you). Keep track of dates (print out a calendar that you can paste on the inside cover). Chart out tests (write results for everything, learn the names of regular tests). When you have a major ailment, I found that you will have to talk to various people along the way. It is so much easier to pull out a binder (in my case) and flip to a certain page and then discuss what it was (with accuracy). With all of the commotion that goes on, our brains are only capable of so much recall when overloaded like that. It is easier to read back through your notes than it is to try to recall specifics. Especially when certain medicines are spelled closely or sound alike when pronounced wrong.
8. Paperwork: If you don’t have it already, make sure that you put together your wishes on paper. Write up a will (even if you do not formalize it with a lawyer). Do you want a DNR or do you trust the people who will care for you? Do you have a living will (what you want done in the event of certain circumstances)? Make sure you document your wishes in the event of bad things happening while you are in good shape/condition. And I am not saying the legalities of it. I am saying that your loved one will be wandering around in a daze wondering what in the hell you would want. If you are unconscious, you will have zero input unless you have previously lined it out for them.
9. If you have the capability, blog about it: If you are having difficulties with something during the care of a loved one, blog about it. You will be amazed to find that you are not alone. That there are resources outside of the your circle who may be able to offer advice to you through this difficult time. AND, your experience may be the one that helps another person who goes through a similar circumstance after you.
10. Never give up on yourself: Dad’s moto once they gave him Ritalin. It was a miracle drug for him. He never gave up on himself when others did. Always keep forward motion (even when you feel like things are slipping backwards). Stay positive.
Today Daddy is going home, to his home, to his pup Max. I am a nervous wreck and scared to death. People keep telling me that it is like sending a kid off to college. You hope you did everything possible to prepare them, you hope they have learned from their experiences up until now, you hope that they will be ok.
Here’s to letting hope float.