Over the past several years, Riley has insisted he would outlive everyone around him. “I’ll live til I’m 103 and be shot by a jealous husband!” That was his mantra. I actually thought he believed this fantasy. It would certainly explain his resistance to accepting anything offered that would truly expand his life. Yesterday the realization hit him that he may not make his goal.
Friday was spent getting the guest room converted into a safe place for Riley to spend the rest of his days. I put up a better, more accessible bed. Provided him with a TV and everything else, including a mini bar, right where he could get to it without shuffling through the entire house. He seemed happy with the new situation.
Very early Saturday morning, (about 2 a.m.), Riley called to me. I thought to myself “Boy, will I ever get a good night’s sleep?” I went to his bed and his breathing was extremely labored. He said he wanted me to hand him the phone so he could call the rescue squad. He wanted to go to the hospital. I hesitated – mentally weighing the options – and then went to get the phone.
I had always said I would not call 911 unless he asked me to do so. The hospice had been cancelled due to a half-point on his lab results. I looked at his body which had swollen since I told him good night at 10 p.m. His color was turning more green than yellow. I punched in the numbers.
At the emergency room, it was determined that he was having a “coronary event.” He was helicoptered to the heart hospital in Greenville. Once there, a heart catherization procedure was performed during which he had to be shocked twice. The results showed no blockage.
It was explained to me that Riley would most likely not return home, even if he survived. Without help there would be no way for me to provide him with the care he was going to need. Also, considering the shrinkage of his brain that was clearly shown in the CAT scan, he would never be able to function without assistance again.
A DNR was established. The doctor then gave me an order. He told me it was my job to go home and get some rest. There was nothing more for me to do at the hospital. If Riley survives the weekend, I was to come back on Monday to meet with the social workers and doctors. We would establish a plan of action at that time.
I had not slept for more than a few hours over the 24. I was worried about driving the 2 ½ hours back home, but decided I would rest best in my own bed. Last night, I slept from about 7 p.m. until 6 a.m. this morning. I still feel like I need a nap. But, it was good sleep. I remember waking up at one point when I heard a thump. My auto-brain told me Riley had fallen. Then I realized that he was not here and I immediately went back to sleep. What a relief it was to know I didn’t have to jump up and see if he was unconscious or bleeding.
It is also a relief to hear that he will not be coming home. On the other hand, I’ve heard that before and I truly, honestly do NOT trust those words. I’ve been right here in exactly this same place before and I am apprehensive about believing what I’ve been told.
Riley’s immortality is being tested. I feel like I’m standing on an egg that is yet to be broken. It must be an Ostrich egg – big and tough. This egg is large enough to provide me a firm place to stand, yet fragile enough to break without warning. The egg is holding me hostage and I am not able to step off without assistance. I’m not trying to hatch the egg. However, there is an inherent sense of being protective of the egg’s contents. Inside the egg is Riley’s mortality.
I feel that I may be getting the assistance I need to step down from this precarious position. But, I don’t know if that assistance will hold me firmly as I take that step. I don’t trust that predictions will become reality. Will Riley’s mortality stay protected inside the shell? Or will the shell break and spill out? If it stays inside the shell, I will certainly need assistance. If it spills out… I can just walk away.
21 comments:
Tough going, tough going. All I can say is hang on to your life as his goes.
Linda,
You are so strong. I am sending you and Riley prayers. God bless you and I hope you find peace soon.
As always, lots of hugs and support from here. x
prayers and hugs....we will see what time brings. i do think all of us are scarred deeply from things and wont know how much until they are gone. even tho we do believe they will not ever die. logically, of course they will. we all will.
thoughts are with you. and riley.
Jo, your comment caught my breath! You are so right, it takes a very long time to realize the damage done to our own selves, and yes they will die sooner or later, but those scars on our own psyche last a much longer time.
Linda, my prayers and love go out to you. Stay strong and take care.
Praying that you feel God's mighty love and peace only He can give during these days. You touch more lives than you will ever realize by sharing this journey..thank you.
While you are reaching the end of your journey, I am just beginning mine. Your words have enlightened me, frightened me, encouraged me, and educated me. Your unselfish act of allowing us to peek inside your most private relationship is greatly appreciated. You deserve peace beyond your wildest imagination.
This is making me cry. Oh, dear Linda. - you don't have to be strong anymore. God bless Riley in all his sad pain and God bless you on this egg of life!
I am right where you are. My husband is dying in a motel right now, but he'll probably survive--again! Twice this week in emergency rooms, more pills (seems he has quit alcohol, and chosen valiume as a substitute). I love him, but I can't help him. I no longer hate him. I hate the darkness that overtakes him. I have compassion on him and others like him.
Linda, what a strong and amazingly compassionate woman. Remember to give yourself time and space and accept all the help you can whilst you travel this sad road. I made the decision to leave my alcoholic after a 5 year cycle of detox, hospitals, rehabs and the inevitable return to uncontrolled drinking, emotional and verbal abuse that went with it. I miss him dreadfully but know I must now rebuild my soul and feelings of self - worth. I wish you God speed and strength and to eveyone else supporting loved ones with this dreadful disease.
I agree, you are a strong, compassionate woman. I'm so glad God put you on this earth. Thinking of you during this awful time.
Linda,
I stumbled upon your blog and your story. My alcoholic mother died at 53 with six kids. I carefully chose a wife who didn't seem like an alcoholic and she became an alcoholic. One day when she was passed out on the floor I said "dear God help me" and the next day she went to a doc. and sobered up and this was fifteen years ago.
Your life will change soon, for the better. God will reward you for your patience, just like he rewarded me. You will find that your defenses will lead to strengths, and make you a strong person.
You both have come so far, continue to be strong Linda.
God bless you, Linda. Thanks for verbalizing everything I feel and think. It is so hard not to lose self in the dark chaos, confusion and insanity of alcoholism. Thinking of you and praying for God's will to be done.
What a difficult time for you and Riley. I too glad that you are getting rest and he is getting medical attention. It sounds like the best decision for all concerned. Hope that both of you will be okay.
Alcoholism is such a terrible thing. It slowly destroys everyone who are dealing with the disease. When your dear husband finally looses his battle, you will then have the time to heal and go forward with your much deserved future for happiness. You seem to have hobbies and things of interest that have helped you get through this long journey. If I may, I would like to suggest that you take your Blog and start writing a book of your experiences. Write of all the good and bad. You already have some writing style and humor in your writing. The possibility of a novel might be just the thing for you to work on. Best to you in your future and so sorry that so many of us have to deal with alcoholism within our families. Jackie D
Ann,,thanks. i realize more each day how scarred i am from all this. lindas blogs help me realize since i see things from her view. they did a DNR and yet the dr careflighted riley elsewhere!that is totally illegal to disregard a DNR! for us who must pay for this stuff, that is a few thousand cash right there! where will we stop? are we able to stop and let them die? what will i face? will i have sense with it or will my scars take over and i will end up the co dependent saving him yet again person? God will have to help me get thru it. i know this. but my view on reality is skewed badly..and i see it clearer with this blog.
careflight? hospice would allow him to die at home, sedated, usually. even hosps will allow this with a DNR (altho it can be a fight). there is no need to treat his heart. or anything else. i did it with my grandmother and im still ok with it.(nothing but demerol prn as she wished) we gotta watch most of the medical people, who want to treat, send bills we cant pay, and all that. i might kneejerk into agreeing to it..and trying in vain as always to save him from himself.
God bless.
Let me see if I can try again to clarify the events over the past week.
Friday evening I was informed that all hospice related activities were cancelled because Riley's albunim level was one-half point too high and therefore did not conform to medicare standards. That would include the DNR on file at the hospice agency. So as of Friday evening there was no DNR.
At 2 a.m. the following morning, Saturday, Riley requested an ambulance because he was having difficult breathing. Since there was no longer any hospice to be called, I complied with his request and called 911.
He was transported to our LITTLE, teeny, tiny emergency room which is really just a "band-aid station" or just one step up from a triage center. They do not have the facilities to manage anything more than the ability to stablize someone in Riley's situation so they can be transported to a larger facility.
Riley consented to a TEMPORARY DNR for the air flight to the heart center. It only covered the flight and nothing more.
Once at the hospital, Riley had a heart cath done and the flight-only DNR was rescinded. Also, it is perfectaly legal for the DNR to be rescinded in the interest of being able to complet a medical procedure. Because of that a new DNR would have to be established once the procedure was finished. While he was in the middle of the cath procedure he needed to be shocked twice.
Riley knew this would be the case.
Riley was alert enough to make his own decision about the DNR at that time. While I have POA, I do not have guardianship. These decisions were Riley's to make -- not mine.
Also, the cath procedure began long before I arrived at the hospital. It takes more than 2 hrs for me to make the drive. So Riley was at the hospital an hour and 40 minutes before I was. It would have made absolutely NO sense for them to wait for me to get there before doing anything.
There was nothing illegal about any of it. Every letter of the law was observed.
Now that Riley has been stablized and the true extent of his condition is know -- a new DNR exists. If he should have another heart attack while at the hospital, no heroic measures will be taken. This is what Riley wants.
I believe the hospital and doctors acted appropriately and that Riley is exactly where he needs to be. He will most likely never leave that hospital -- but everything is going along exactly as it should.
Linda, I hope it's OK for me to offer some clarification here. A DNR or do not resuscitate order doesn't mean do not treat, it just means legally if the heartbeat or breathing stop, do no CPR or shocking of the heart.
A DNR doesn't mean no ambulance transport, no CareFlight, no ventilator, no coronary cath, no surgery or no life saving medications. All those things would be perfectly legal and appropriate with a DNR in place.
Those other "do nots" would have to be spelled out in a document which like the DNR must be signed by the attending MD and made a part of his record. However sometimes the order is put in "comfort care only" or "allow a natural death" in which case like Jo's grandmother there were no heroic interventions of any kind.
There are a lot of misconceptions about DNRs. For example I hope the hospice didn't say that because they were withdrawing the DNR was nullified. That's not their DNR, it's Riley's, and they should have given you a copy. The value to any family member of an end stage alcoholic of having a DNR in the home is that if the alcoholic arrests or is found dead, you can show them the DNR and the EMTs don't have to do CPR or defib.
But it only works if you show them the DNR, they don't know it's in place unless you show it to them, and in fact you often need to get pretty assertive about backing them down. Lifesaving is what they do and they want to be very sure they are legally and morally allowed to stop their efforts. The additional value of the temporary DNR to CareFlight was that if he arrested in flight they can't be sued if they can't get him going again.
Given the situation, you would have been perfectly within your rights to call 911 even if there was a copy of the DNR in the house, as I said earlier DNR doesn't mean do not treat, it just means no jumpstart once the battery is dead!
With that said, if he has another heart attack in the hospital it's a huge gray are as to what they will do. With just a DNR in place depending on the doc there at the time, while not given CPR or shocked he may end up intubated, back in surgery, back in the ICU, etc. Although if he's moved to the palliative care unit the emphasis will be much more on comfort. Still, you might ask his doctor to talk with Riley and develop a set of orders so they know how far to go.
Thank you, Kathryn!! That should clear up any misunderstanding. I want to say -- I never received a paper DNR from hospice.
Thanks to all of your for your hugs and prayers. I have certainly needed them and I think it helps me to stay strong.
Linda
you need copies of his DNR,,,many copies. they lose them...on purpose. its called money. every shift you begin again with what they should do or not. it wont get passed on too often. been there.
our DNR was no heroic measures. no water (after i caught a nurse with a syringe shoving water down her throat) nothing but pain meds. no oxygen. no iv. same with my dad when he was passing on. im still good with the decisions. this was after they were unconcious, tho. concious they could refuse on their own.
and of course its her--lindas-- right and choice,,,i dont knock anyone for that. not at all. but its gonna take a meeting on what to do NOW...and what you want done, since you rescinded it temp already. people have issues sometimes when push comes to shove. i been in that place twice. so im not just speaking off the top of my head. i have been there. even riley having a heart cath ,,,it doesnt spell out details...i think..on his wishes. it may only be a no cpr one...in which case it needs to be detailed a lot more.
but for all of us...watch it when it comes your time to make these choices. nullifying a DNR in a life flight is....well,,,imho..it would leave a huge gray area in the medical minds. either its dnr, or it isnt. it cant be both. my moving him, they signaled they would treat him..and we must know exactly what is allowed or not.
and watch what you will be responsible for paying for. lifeflights here are about 12,000$. one way. our insurance will not cover it, thats cash! mine doesnt even have that much life insurance, much less anything to pay for stuff that like..ICU..can hit over a million real quick. oh, it sounds nice to want to do it, but reality says who is gonna pay for this?
we each have to make our own choices. all this info will help others to do this. including me. thats what im saying. my grandmother passed in the rest home..her choice,,mine to fight over to make sure it happened. they sent her to the ER, only to have the dr see the DNR and send her back. smart dr there. my dad passed in the hosp but it was a fight to get his demerol prn for days and days.
hosp will resus ....its money for them. if it happens, be sure you can handle it. eventually DNR must mean do not resus. no tubes, no codes, nothing but pain meds. and this must be spelled out for the legal crap...and the people handling him. and many will fight you on it. been there, got the shirt. this is why hospice is SO important as a legal back up. they will not do anything like that. the decision is out of our hands. but...riley didnt qualify, altho i think that was his drs fault. in texas we can change drs legally when they wont adhere to last wishes. to have him go from hospice (admtting he is terminal) to this...well,,,its a mess. i feel bad for linda. we know mentally riley is not competent, yet the drs are treating him as if he is. what a huge mess.
i must have misunderstood what was meant by his DNR. hospice simply lets them go in no pain. nothing more at all. rileys must be diff,,,or not detailed,,,or something for this all to happen. or he changed his mind once he got a idea what it all meant and he recinded it, which he can do legally. . i dunno. just a warning for us all,,,make sure its detailed. once they say they want treatment ,,,the DNR is void. and there you begin again with how far to go...how much can you afford...etc.
had riley been unconcious and they didnt adhere to the DNR, then that is illegal for them to do. i didnt mean for linda...she has poa. i mean the drs and nurses. not HER.
good luck to us all and to you, linda. and to riley. life is not black and white. not even close. and death takes a long time sometimes. weeks. not minutes.
hope this is clearer!
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