“Lets just do it real fast and get it over with”
“I want it to be what you want though mom, that’s why we have to do this”
“I know, okay”
That was three years ago.
Due to the progression of moms dementia, it had been suggested to us that we should make sure to have a few ” things in order”. In other words prep for death. There is no pleasant way to talk about or prepare for this without causing some emotional strain, for all involved. For the person that is filling it out as well as for the family.
‘We have done a lot of things, this can’t be the worst thing mom”
“well it’s not your life we are talking about”
uggh, I thought… just stay positive
“okay, I guess, you’re right”
There really isn’t an easy way to do this, I mean, have you read the form, it sounds so final. Okay so I know that is the point, but when the discussion revolves around someone you love, it takes on a completely different feel.
We did it, we filled it out, and we talked about the different situations that might occur or that could occur and really there is no way of knowing how one will die, or what will occur to lead up to that persons death.
MEDICAL ORDERS FOR LIFE SUSTAINING TREATMENT
DNR – DO NOT RESUSCITATE
DNI – DO NOT INTUBATE
DNH – DO NOT TRANSFER TO HOSPITAL (unless needed for comfort) (WHAT?!!)
It gets complicated and the DN’s can overlap
I heard mom from my room, she was up and moving around and it was very early, I jumped up out of bed, I always do, I have to check on her.
“mom, are you ok?”
“something is wrong, I can’t breathe”
“okay, let me call an ambulance, sit down for a minute”
I got her seated and picked up the house phone , which I rarely use and for some stupid reason I fumbled with dialing (pushing buttons, actually) 911.
I dialed 911
“no thats not right, I need to push the green button”
I did and dialed agai’n
“hello what is your emergency”
” I need an ambulance, my 89 year old mom can’t breathe”
“did you just call and hang up?”
“oh God, I’m sorry, yes that was me”
Mom also has the medical alert bracelet and the option to push that button for the ambulance never crossed through our brains. It is a little scary how your brain functions, or doesn’t function under momentary mental chaos..
Long story short, (10 minutes, tops) the ambulance arrived.
Thinking about the MEDICAL ALERT FOR LIFE SUSTAINING TREATMENT paper hanging on the fridge….
‘under what circumstances should I point out the paper? I know it says something about hospital transfer. Just don’t look at it. She has to go to the hospital, she can’t breathe. So what if she stops breathing, would they resuscitate her? don’t get the paper.”
“I want to go with you”
“ok, no problem”
So I rode in the ambulance. I didn’t mention the paper on the fridge and for some reason I started to feel guilty about it, but I don’t know how to handle this.
You know how it works, things happen fast and information get transferred quickly these days. Suddenly it seemed that the hospital ER. had all of moms medical records straight from her Dr’s office and included was a copy of the MEDICAL ALERT FOR LIFE SUSTAINING TREATMENT and they asked me if I knew what it said and Of course I said yes.
The doctors office has their copy of course!
I’m scared now. I need to stay with her.
Everyone puts on a mask before coming into her “booth”. They have her on oxygen, of course, but her heart rate is very high, and she has a fever, they keep saying “frail” and suggesting pneumonia. Not only did they had her medical records but they even had the x-ray she had had 4 days earlier and said it was clear.
Mom can’t hear and she has dementia, so she needs someone with her who understands all of this. That is usually me and I’m good at it, as we have evolved to this.
They took her for another x-ray, and did the nasal swab for flu. I didn’t want her out of my sight, I need to translate, not really translate but sometimes I need to be her ears, her mind and her voice.
There are so many people that come in and out to do a variety of things to and for mom and I have explained the hearing and dementia numerous times, I just wanted to scream For Christ sake write this stuff at the top of the damn chart, and highlight it, it’s important stuff!!!
All of a sudden the head nurse came over to the sliding glass door of the”booth” and taped a couple different papers to the outside of the glass and she walked away. I went to see what the papers were…….
caution, contagious, droplets and contact; wear proper coverage
….. what does this mean?
Tying to get up out of bed in ER
“I’m going to need to go to the bathroom”
“okay, well we need to call the nurse, hold on a minute”
I pressed the call button
After dressing in what looked like a hazmat suit the nurse came in and looking at mom , the nurse spoke too softly
“how can I help you?”
so I answered for mom
“she need to use the bathroom, and I have a question about the signs on the door”
“well she can’t get up, your going to need to use the bedpan”
mom groaned (who wouldn’t)
After being summoned for the third visit to help mom to use the bedpan and the noticeable (body language) impatience of the nurse, I just started to help mom with the bedpan myself.
She requires patience, she isn’t stupid, she has dementia, so be kind to her, that face you are looking at has a history and a life story too and she’s my mom, so be patient with her.
Finally one of those bedpan visits the nurse did inform me that mom tested positive for the flu and the x-ray did show a little pneumonia, that is why the sign had to go on the door.
I found myself getting frustrated, and I’m scared. I can’t leave her for a second either, she keeps forgetting that she has to stay in bed, she doesn’t understand why we are here.
“can’t we just go home?”
“we can’t yet mom and actually you are going to stay overnight”
groaning again and a sincere childlike sadness on her face
My heart breaks for her.
“Its okay, mom, I will stay with you”
Three demanding weeks have passed, after the week in the hospital and the two weeks in rehab mom will be coming home on Friday.
Things have changed for mom since we drove away that morning in the ambulance. Although mom has come a long way since then, I am realistic enough to understand that this is likely a permanent step back.
She no longer has her cane, she needs to use her walker.
She now will need oxygen at home and I will need to monitor her oxygen levels to be sure they stay above 90.
She can not get up without assistance and she can never be alone. I may need to get a bed alarm.
We have new furniture too; a commode, it makes sitting and getting up from the toilet so much easier for her.
I do feel a lot better about the Form on the Fridge;
DNR does not mean that the patient will not be cared for. I have included the link below to prevent the stress of knowing what the right thing is to do. I have done a lot of reading over the past few weeks. I have learned a lot and I honestly feel we all need to understand this emotional process so as not to panic that your loved one won’t get a simple thing like oxygen.
click here to understand the medical orders for life sustaining treatment order
DNR – DO NOT RESUSITATE
DNI – DO NOT INTUBATE
DNH – DO NOT TRANSFER TO HOSPITAL (unless needed for comfort)
So although we may have made a step backwards, we still are making memories.