Last year Bob developed a life threatening blood clot in his leg and had a terrible episode where he had two seizures, and coded twice in one night. They sent him off to the hospital before I could get there and intervene, and before I could bring them my papers at the hospital, they had revived him. He was in a coma for days, in the ICU and then the hospital for 11 days.(The nursing home is clear about the DNR order now). The Dr. thought it was either the Depakote or the Seroquel that they had him on that caused the blood clot. He regained consciousness and breathing on his own, but bones he broke left him disabled as he couldn't relearn how to walk or use an arm as his shoulder broke. (Prior he was drawing and drumming, so this all really changed his quality of life, and it was sad to see something other than the dementia cause more disablity). They charted he could never have Depakote or Seroquel again. (Both of which I had told them were causing more problems than they were solving - but had been a condition of the home keeping him, due to him being ejected from another nursing home due to behavior, which got bad when they insisted on these drugs). He was given no more anti-psychotics, but was given anti-seizure medication for a while. But they have kept him on coumadin to prevent blood clots. He hates the blood tests for the coumadin levels. Since they thought it was one of the drugs they took him off of that caused the blood clots, I am wondering why he should stay on the coumadin? He is 68 and never had any need for it prior.
how far along in the disease is he? Is the drug improving the quality of his life? Did you discuss issues like this before he got too bad, when he could still comprehend well what was being discussed? If he has another blood clot, will it likely take his life and are you alright with that?
Personally, I would have it stopped. There are other natural things that will thin the blood like Garlic, ginger, ginkgo, dong quai, feverfew, fish oil, vitamin E. If it were my husband and his quality of life is not good - basically just waiting for the disease to take him - I would stop and let him enjoy what time he has left.
It is not an easy decision, but since you have the DNR in place, that tells me you are not looking for heroic measures. Question: when you found out he stopped breathing how did you feel? If it happened again, would you painfully accept it?
Maybe do a pros and cons including discussions the two of you might have had earlier.
This is a really tough decision. I was recently told by a doctor that now there is a blood-thinning drug that does not require constant blood tests, the way Coumadin does.
My husband was on Coumadin and I found out that a 325 mg aspirin does about the same thing. I pointed this out to the doctor at the time and he dropped the coagulation medication and he just took aspirin.
My wife is on Xarelto but there are others. Since her warfarin levels were very unstable, requiring weekly blood testing, if not more (we had a testing unit at home) Xarelto was great even though much more expensive than Coumadin (Coumadin is dirt cheap). She was her pulmonologist's first patient on Xarelto. He understood her dementia and that it was a great strain for her to have weekly blood testing. The savings in blood testing might balance out the higher cost of medication. The problem is that Xarelto and the other new drugs are approved for only certain conditions and she had to wait for Xarelto to be approved for pulmonary embolism. So there is no FDA approval for these new meds for all blood thinning conditions, only the ones where it has shown that the benefits outweigh the risks. She was approved for Xarelto around 4 years ago so I suspect that it is approved for many conditions requiring a blood thinner.
The downside to Xarelto, and I suspect the other new drugs, is that doctors are not as familiar with it as with warfarin/coumadin. If you have too much warfarin in your blood or you are rushed to a hospital and they need to increase your blood clotting, hospital staff know exactly what to do with warfarin. I do not know if that is the case with Xarelto. But for us the risk was clearly worth the benefits.
If the blood clotting is seen as a minor risk then doctors might only prescribe baby aspirin. But high dosage aspirin every day has its own risks.
Thank you for your thoughtful replies. They thought the blood clot was caused by the anti-psychotic drug(s) (He was on Seroquel, and they had started Invega,a once a month anti-psychotic they started on top of it, along with Depakote). He is off all of those now. (It was insane - all of those drugs were turning him into a zombie and his distress was over losing abilities and getting kicked out of another nursing home, who didn't seem to have a clue how to deal with a young mobile person with Alzheimers except to drug them). Now he is stable, but completely disabled and aphasic- can't make a remote go, can't move his wheelchair, can't eat much without being hand fed. He can swallow fine and isn't in any discomfort. He still smiles to see the dog there or me, and can communicate yes/no and an occasional sentence when the stars or brain cells line up. He still enjoys listening to his music, and watches TV, and responds to some images. I guess he is early stage 7? He was diagnosed in Dec 07, but we had two years of obvious symptoms prior - one in which I was trying to convince him to see a Dr. and one where we had Dr. & MRI, Neuro Pychology exams, Neurology exams, a Memory Impairment Clinic, MRI's, and appointments were 3 -4 months apart. So we are 8 years from diagnosis, but more like 10 years when problems became known. So this is year 9 or 10. I know he did not want to live like this. This is the 30th year of our relationship. But with ALZ came Anosognosia, complete lack of insight or understanding that anything was wrong with him. So there couldn't be much further discussion beyond the Durable Power of Attorney and Medical Power of Attorney he had done. As he didn't really think anything was wrong - not denial, inability to realize it. He broke his shoulder badly during the episode he had, and I was advised to let it heal that way and didn't put him through surgery, and it did heal, though not useful as before. And the hip he broke healed, but due to the disease he could not learn to walk again. When he coded that night, I was more distressed that they put all the life saving equiptment in place (he didn't want that,especially a breathing tube) and there was nothing I could do about it for 3 day as they were doing that as I was trying to give them the papers with his directives. (In fact they were treating me really strange, as it was HIS directives, not mine that he didn't want anything. They treated me like I was some horrible person to be questioning their heroics. He started breathing on his own and became conscious on his own from a coma state, so he spared me having to make decisions. But would he want to live as he is living now - well, I still see his spirit inside. He still has some quality of life. A smile from a breeze on his face, or something beautiful. I just hate that he has to go through blood testing which he hates. And I will ask the Dr. if an aspirin could do the same. Blood clots aren't anything he had prior to those drugs. His heart is healthy. So I am not sure if they are helping or hurting his quality of life. I think if he had passed from the blood clot incident, it would have been a blessing for him to go easily. He is still somewhat young (68) and at this point is relatively peaceful and not distressed, healthy, with a good appetite. For that I am grateful. But at the time of the episode where they revived him, he was drugged almost into oblivion, and had moved into the only LTC home I could find that also had a psychiatric unit, as the drugs the prior home gave him caused aggression.