On Sunday, my dh passed out twice during our church service. PTL, we had a medic and a doctor in the congregation tending to him immediately and firemen 2 minutes away. Needless to say, he was whisked off to the hospital, STAT. Tests showed him to be alarmingly anemic and that his kidney functions were shutting down and he needed 2 units of blood. We stayed at the hospital 3 days and nights. I'll spare you all that happened in between, but it turns out that his bladder was not emptying due to seriously enlarged prostate, trapping all the urine in his bladder that kept getting bigger and bigger. And, the urine backed up into his kidneys, beginning to shut them down. He started to improve with the addition of the 2 units of blood, a catheter and elimination of gallons of urine. As soon as his bladder returns to normal and his other health emergencies calm down, the urologist will do a TURP procedure, clearing a path in the prostate for the urine to flow again. This is all very good news.
When they checked us in, they asked for any Advanced Health Directives, which we have. Our Directives state emphatically that we do not want to be kept alive unnaturally. With his renal failure looking imminent, a Nephrologist was called in (kidney doc) and they immediately started talking dialysis. I referred them to the Directives, which I could see right away they would ignore. I sent a email to our attorney who said that those Directives were "iron clad" and that I should put my foot down and call him if they refused to listen. As it turned out, we didn't have to travel down that path. But, I wonder how many of you have encountered the reluctance of the medical community to follow your Directives?
Rosemary, you're sure taking good care of your husband to be so quick-thinking. I did have similar problems, but I never thought of getting in touch with the attorney. Well done!
During the two weeks between my father's last doctor visit, hospital stay, and final NH stay, I never left the house without the paperwork. My POA; my Health Care POA; his living will (stating no heroic measures); and his DNR. Actually, I know someone who keeps copies of those papers in the glove box in the car - a very good idea. The doctor at the hospital and at the NH asked me about a feeding tube. Probably because my father was 94, and had lost his swallowing ability, they never questioned my orders of no feeding tube, but I had the paperwork with me just in case.
Now that I am trying to get Sid placed in a NH, I am once again carrying around all of the paperwork. Maybe a little flash drive with all of the paperwork on it might be a little less cumbersome, but since I can't find my flash drive at the moment, it's a folder full of papers. And men wonder why we women carry such large handbags.
Dialysis is a difficult procedure even in cognizant patients. It is not recommended for Alzheimer's or advanced age patients. My dh has last stage kidney function and his pc dr wanted him to go to a specialist. When I asked for what reason, he said for possible dialysis. I simply said no, it is not an option and the dr. did not push it although it did make me feel guilty until I shared it with the wonderful beings here on Alzheimer's spouse who helped me feel ok. Maybe you can find the other post. If you search the web you'll find a kidney site that totally explains who is not a d candidate. Hope this helps. Just put you foot down and say no.
On his last day home my H fell over and over again. Finally I had to call the paramedics. Over the previous weeks H had fallen many times. He would kick and hit me when I tried to get him up. My bruises were obvious.
That day H's anger and delusions were escalating fast. The paramedics arrived to a chaotic scene. I gave them a copy of the dpoa and they asked about orders. I told them DNR and DNI were at the front of his chart.
He was transported and I was required to wait for a specialist to interview me about abuse.
After H's death the bills started coming in and I saw the charge for "extubation". My lawyer said that emergency responders are not required to follow "hearsay" directives.
Regardless of the circumstances I should have had a hard copy of the directives; both DNR and DNI to give to the paramedics.
If I had it to do over again I would have prepared something for the paramedics to sign verifying they had received copies.
Thank you for this good advice and reminding me to get these papers in order. I had read it earlier while going through the threads, but sort of made a mental note to do sometime. Getting copies of these documents is my 'to do' for the weekend. It was very helpful, Joan, to recap what you carry in your purse.
In Florida there is a special DNR form signed by the physician. It is on canary yellow paper (very specific) and kept on the refrigerator door. ENTs know to look for it. It's been so long that I don't remember if I had to sign it and have it notarized.
This is called the POLST Agreement. It has clearly stated the patient's wishes regarding resuscitation.
I'm going to look for the thread on kidneys. I don't usually have luck finding these things, so any of you who are more skillful at finding threads here, please jump in. I'm sure the kidney issue will again raise it's ugly head. DH PCP is in the process of finding us a Nephrologist. I'd like to be able to tell her to not do that for this reason.... Although, she is in the same camp as we are about saving us from one disease to live longer and suffer more for AD to take it's course.
I have had the opposite results with emergency care. The first time Lynn went in for pneumonia I was shocked when the doctor asked me if I really wanted to treat him. It took all I had not to deck him! The attitude of the staff seemed to me to be, well he has Alzheimer's so he is not a vital human being worth treating. I was so outraged by his lack of concern for Lynn's comfort that I filed a formal complaint. It's a simple pill, of course I want him treated.
They must have written something in his chart because every time since then there has been nothing but compassion. I have made it clear if it is something an antibiotic can cure then yes we will treat, if it is more invasive or would cause Lynn pain, then no we will not. On a side note, every time a resident leaves the facility the DNR orders go with them.
Sorry this happened to you T, hoping your DH is feeling better!! ((Hugs))
Hi Nikki, Yes, Herbie is feeling much better being at home and with me. The hospital experience was about to get out of hand when I told the nurses that if they didn't up his meds they would have a real mess on their hands. They ignored me until I left one day to go home for a shower and some clothes and was gone for several hours. Herb was pacing and starting to spiral out of control. By the time I got back they had called the doc to order additional meds to keep him stable. That was all it took and we got through the next 2 days/nights with much less anxiety. Now, he's back on his normal med routine and doesn't need the extra Lorazapam to maintain. His labs today all show he is improving from all conditions caused by the urine backup. He's such a good patient for me and thanks me all the time for being so "good" - his way of telling me he appreciates what I do. Even though I know the outcome of the AD and was thinking that his kidneys were shutting down and I was going to lose him sooner than later, I was having a hard time even thinking about him not being with me. It is a difficult to watch them slipping away and know/think that the end is near.
Home Health Nurse coming tomorrow and will, hopefully show me how to shower him with the catheter, and a few other things. I'm starting to put together a Care Plan for the doctor to sign as I can't leave him for more than 20 minutes at a time now - probably shouldn't even do that, but, we gotta eat. I will talk to his PCP again some time next week and tell her not to bother with the kidney specialist; she will understand as she feels the same as I do - much better to let kidney disease take him home than to watch AD systematically destroy who he is - I almost can't think of an uglier way to die.
I put together a file that has Steve's advance directives, DNR and a copy of his medical records showing his current medications and diagnosis. (I got the latter from the nurse at the ALF.) When he was having medication-induced delirium several months ago, I got a call at 1 a.m. saying they might send him to the ER. It was after that call that I realized I needed to pull all that paperwork together and have it handy so I could grab it in case of an emergency at any point. Thankfully, he never had to go to the ER.
I have heard stories over the years of hospitals and doctors ignoring DNRs. Which is odd since doctors have DNRs for themselves more often than the public.
Keep in mind that Catholic hospitals may not honor DNRs. In particular, they may put in a feeding tube, or refuse to treat someone who refuses a feed tube because rules require provision of food and and water. I'm not say that these hospitals don't wrestle with the ethical issues, but you may find refusal to obey a DNR. Here is an interesting story. I'm no expert on this issue nor on what Catholic actually do vs. their written rules.
An important issue revolving around DNRs is the current overall health of the patient. I have a DNR for myself but if a feed tube or CPR will allow me to have an active life, go ahead and do it. But if it is to only keep me going in a vegetative state, obey the DNR.
paulc Another point of interest is when is a hospital Catholic and when is it not. Some, perhaps many, Catholic hospitals have been sold to megabusiness hospital chains. These huge and powerful businesses run on profits and, in my mind, clash directly with the original nonprofit mission of Catholic hospitals. These hospitals maintain the Catholic image, the name, leave the saint on the front of the hospital, and often have crucifixes in the rooms, BUT they they do not minister to the poor and the sick as was the mission of the order that founded the hospital. They are part of a huge profit-driven complex bent on cutting off nursing staff and doctors at the knees. Really, when you enter some of these new, what I call temples of profit-driven disease, with soaring atria, marble, and glass, do you think of cathedrals of Europe? Hospitals with concierge service, valet service, and surveys galore. These amenities all come at the expense of salaries for adequate nursing and physician staff. If you watch newsreels or old movies from the '40s and '50s, the hospital rooms are sparse and clinical, but the patient is surrounded by lots of staff. Someone on this site I believe, when discussing ALFs, mentioned that the super homey atmosphere that many ALFs put out is for the benefit of the families and that the patient doesn't notice it. Look instead, they urged, for the number of staff and the interaction of the staff with the patients. And so it is with hospitals. How many nurses could a hospital hire just on the advertising budget of one year?
The point being, and I got a little off track there, how can a hospital that might be Catholic in name only, impose Catholic ethics on patients when they themselves live only for profit. OK, I'm down off the soapbox for today.