After all the medication roulette I described elsewhere on this site, and worsening edema and weakness and gradual inability to walk over the last eight weeks, which I thought was a side effect of Seroquel and wanted him taken off of, Monday a week ago he collapsed and had a seizure at the nursing home. They had withheld his Ativan for a couple of days, in response to my worries that the Seroquel, was causing his symptoms. The night before one of his legs had swelled. I had alerted them to it swelling like that weeks before. They said for a minute he had no pulse. He was taken to the hospital, was responsive when I got there, then had another seizure when they were doing a test minutes later, and was put on a respirator and became unresponsive. I was just going over his medical directives with them, and had no say in that matter of either the respirator or the feeding tube they put in. It was determined he had a deep vein thrombosis. He was in the ICU for 3 days, started breathing and became conscious on his own so the respirator was removed, then moved to a room, where it was determined he also broke his shoulder when he fell. Once the Seroquel was out of his system he was able to communicate better than he has for months. He hasn't been combative or resistant to treatment at all. In fact they all said he was sweet. We had some good contact, as I stayed there, where many friends sent him messages I read him, that he was loved and supported which he could hear & smile about. His aphasia wasn't as bad without the Seroquel, and he could communicate with me better. He listened to a lot of his old music (he was a professional musician) which I was able to bring him on a laptop. One Dr. put him back on the Seroquel for two days (worrying about sudden withdrawal) and he became almost comatose, so they took him off it again. The Drs. thought the thrombosis was likely caused by the Seroquel and the seizures from the sudden withdrawal of his Ativan. I had told them all along that the Ativan was the one drug that worked for his agitation, and the Seroquel (as well as other antipsychotics they have tried before) act like poison to him. They were giving blood thinners for the clot and didn't see brain, lung or heart damage. The feeding tube was removed day before yesterday. However he had a bad cough after the respirator was removed, and now they have determined he has pneumonia. Today they called wanting to place a picc line and said it would make him more comfortable for taking blood and giving him antibiotics, so I consented. He is very ill, yet they are talking about returning him to the nursing home, due to medicare, and can only tell me day by day how long he will be hospitalized. This is day 9. They said it isn't time for hospice yet. The hospital they took him to is not one nearby, and I stayed with him as much as possible all last week, spending the night in the hospital for a few days since we could communicate. Now I have rotten winter weather to contend with to even get there, and I am worried if he goes downhill I won't even be able to get there to be with him. I was exhausted so I came home to take care of my animals and get some sleep, and today the roads are a mess. I am trying to make the right decisions for him - he has a living will and health care directives I am durable power of attorney for. Last Monday he was trying to go, with the help of the medical profession and the antipsychotic drug which I had been trying to tell them was making him go downhill last 8 weeks. He is 67, diagnosed with EOAD in 07, has been ill for at least 9 yrs (one year of trying to get him to a doctor, and one year trying to get a diagnosis). I am worried about decisions I am being asked to make - if they make him more comfortable, I onboard. But if they prolong his suffering, I am not. When he was clear minded last week he said clearly he wanted to live and was glad he made it through that crisis. If he survives this pneumonia, he still has a chance at some sort of life, and was still getting pleasure seeing the nursing home dog and birds. He was happy, listening to music, playing a drum and visiting with me and his brother the night before he collapsed.Though the broken shoulder will take time to heal. So far some decisions like respirator and feeding tube have been out my hands except this Picc tube. I need help navigating this. I know I can appeal to Medicare if they try to release him too soon, and I have worries about the nursing home being able to care for him in this condition if he is released, though they assure me they can. Any suggestions or input is welcome.
mariposa in my heart, when you say, that he loves the dog and birds at the nursing home, I hope he can remain there and get stabilized. What a good loving wife you are.
mariposa what an ordeal. If you have seen that eliminating the Seroquel has given him more quality of life, If me, I would insist they not give it. and restore the Ativan on an as needed dosing. you can always add if needed later. and see for yourself just where he is with the need for such power meds. we know for a fact many do not respond well to some of these meds. you have the say over his care, whether they likeit or not. adding a feeding tube or respirator without consultation and or having his living will at hand, would infuriate me. its your choice as his appointee to decide. I think you should have a sitdown and powwow with the heads of dept and make sure they know who is in charge of decisionmaking in the future. good luck, I hope you get some good response from him while he recouperates.
None of us are on site and qualified to make medical decisions. BUT a Medical Directive, a Living Will, etc are legal documents. If you are a resident of the USA contact an attorney at once and set the Hospital, Nursing Home or whomever is touching your husband straight
So sorry to here of the troubles you have been having, it is so stressful. I too thought that the healthcare directive and POA would not allow them to make those decisions. Praying for peace about the hard decisions yet yo come. ((Hugs))
So he now has: a blood clot in his leg, a broken shoulder, pneumonia, and a UTI. They can't do surgery on the shoulder, so just have it in a sling to heal as he needs to be on blood thinners for the deep vein thrombosis, probably caused by the Seroquel. If he is moved, the shoulder is very painful. That's all they are doing for the blood clot. They have a catheter in him. He yells in pain when they turned him over to clean him from eliminating. So essentially he is bed ridden for now. And they plan to move him tomorrow. Night before last they realized the Seroquel made him almost comatose, and the Dr. decided today he is allergic to it. Same reaction he had to Risperdal and Depakote. He is on a new medicine for seizures, which he never had before they withdrew his Ativan without reason. If I had signed a DNR order when he entered this nursing home, he would have passed last monday when he collapsed. However I didn't, because the last nursing home didn't call a Dr. in for 9 days when he had a respiratory infection, and when I kept demanding one they finally said, but you have a DNR. Yes, if he is dying, not let him suffer with something curable. I rail against the indignities this disease wreaks on its victims, and our broken health care system.
Thank you all. So medicare won't pay for another day in hospital so he is sent back to his room at nursing home with his broken shoulder, deep vein thrombosis, UTI & Pneumonia. (The last two caused by the hospital from catheter and respirator in hospital). Don't know if they'll be able to nurse him through all that, and don't know if he'll walk again. But he did watch a show on Coyotes tonight and was engaged and laughing at the young ones. Say's he's glad he survived (he pretty much answers in yes & no). Each trauma sets him back. Will he walk again & have some life left? Remains to be seen. Now at least I can rest, get back to my business and cleanup the wreakage of my house from not being here. Maybe I'll find my late bills that are lost in all the paper. Even if your partner is in a nursing facility, you can still end up with your own life completely out of control. I am so grateful for the support on this board.
How do I get an expedited (fast) appeal in a hospital? When you’re admitted as an inpatient to a hospital, you have the right to get the hospital care that is necessary to diagnose and treat your illness or injury. If you think you’re being discharged from the hospital too soon, you have the right to ask the Quality Improvement Organization (QIO) to review your case. To get the QIO’s phone number, visit M edicare.gov/contacts , or call 1-800-MEDICARE (1 - 800 - 633 - 422
Within 2 days of your admission, you should get a notice called “An Important Message from Medicare about Your Rights” (sometimes called the “Important Message from Medicare” or the “IM”). If you don’t get this notice, ask for it. This notice lists the QIO’s contact information and explains: ■ Your right to get all medically necessary hospital services ■ Your right to be involved in any decisions that the hospital, your doctor, or anyone else makes about your hospital services and to know who will pay for them ■ Your right to get the services you need after you leave the hospital ■ Your right to appeal a discharge decision and the steps for appealing the decision ■ The circumstances under which you will or won’t have to pay for charges for continuing to stay in the hospital ■ Information on your right to get a detailed notice about why your covered services are ending If the hospital gives you the IM more than 2 days before your discharge day, it must either give you a copy of your original, signed IM or provide you with a new one (that you must sign) before you’re discharged
Mariposa, hugs and prayers for you both. I am so sorry that both of you are suffering thru this crisis. First take care of yourself. Second, tell him everything that you want to say to him while he is alert and aware. This disease can take the awareness at any time. I am surprized that the home took him back with the picc line. not all staff are equipped to take care of them. In Georgia it requires a skilled nurse staff. Please make sure that your directives are on file. I carry them in my purse at all times, even though with every admission I have them make a copy for their files.
They took out the picc line. Now I find he has an ulcer on his foot - probably post thrombotic syndrome. If his shoulder is moved it hurts terribly, but at least he can talk as the Seroquel rendered him unable to communicate. They are getting 25% of his meals in him. I'm not sure he'll ever get out of bed again, his leg hurts so much. They are just using blood thinners for the clot in his leg, but it isn't swollen like it was. He'll have to be in bed til the shoulder heals and leg pain is resolved. Feet are up. He's miserable & I hate seeing him suffer. The pneumonia is from the breathing tube they put in when he had the second seizure and I was in the ER trying to give them my paper work for directives. The swallowing problem was caused from the feeding tube they put in. That they said was needed to give him medications. The bladder infection was caused by the catheter. So three new problems. They didn't find his shoulder was broken til the third day in the hospital, broken when he had the seizure they thought was caused by withdrawing his Ativan, since I was complaining about him getting progressively more worse on the Seroquel. And the deep vein thromobosis and high blood sugar he now has, as well as the foot ulcer were from the Seroquel. The Seroquel was given for "aggression" which he did NOT have - he was hitting at people because he lost speech with a UTI and lost continence, and didn't know any other way to ask for things, and was in a home that wasn't addressing his needs. This is what the medical profession does for people with EOAD. Yes, I could have asked for another day at the hospital, but I was afraid of what else might happen there. At least he is in his room. I don't know if he can overcome all this. Life is hard enough for a person with this disease. We are the witnesses, and its lousy to watch someone you love going through so much horror.
Mariposa, more prayers for you both. Have discussed having Hospice staff visit him in his room. They might have some suggestions for making both of you more comfortable. HUGS
Oh thank you all so much! They figured out today he can't bear weight on the other leg and are getting an xray. It is bruised not ulcered, I couldn't tell as it hurt too much to look at it. The nurse had said it was a wound the other night with a skin check. It took the hospital 3 days before they figured out his shoulder was broken from the seizure. I am wondering if they missed the ankle. Maybe he will overcome this episode. After he was unresponsive and then awake and in the ICU friends from all over sent messages and things they wanted him to hear. I reread them to him as he was amazed, and each time they are new. He said once in the ICU, it will all be ok. And he said it again last night. (This is more than he'd been able to communicate in months). So I know it will, whatever happens.
I don't know who to believe about what any more. First the hospital said the clot in his leg had gone to his brain, lungs or heart. Then they said it caused no damage and was still there. They thought the arm wasn't working because of damage from the event. Then they asked me if he'd had a fall. Well yes, he collapsed with a seizure and no response when they took him to the hospital - does anyone read a chart? Then they said dislocation and break, then no dislocation, then surgery, then just a sling. When he got back to the nursing home, the nurse noted something with the skin on his foot. I thought thromb ulcer. Now they say its a bruise, he can't bear weight on it, and ordered an xray. So he was in the hospital for 9 days after a collapse, and somehow might have missed a fractured foot or ankle? On the good side, he is eating. On the heart breaking side, he got out a whole sentence tonight - first in a long time - asking me to take him out of there & live together. I told him I'm working on it - he has been in nursing care for 3 years. Thank goodness he has had no behavior issues during the ordeal & no antipsychotic drugs now. Hope that continues. He had over 32 days (over 2 visits) in geri-psych last year. I'm still worn out from THAT. Its supposed to snow 5 inches tomorrow and I'm actually hoping they plow me in so I can try to catch up with the two weeks of work I missed at my biz and start to clean up the mess here. He doesn't do well if I miss a day or two visiting, but its time to take care of me & they are taking good care of him.
""He doesn't do well if I miss a day or two visiting, but its time to take care of me & they are taking good care of him.""
Yes, it is time to take care of yourself. You sound totally spent after this last nightmare.
As for the clog going to the brain - it and/or the seizure could be responsible. Too bad we all can't afford to have an independent doctor to review the records for a unbiased opinion. Sounds to me like the left had doesn't know what the right had is doing!
I'm afraid if I'm not there they won't spend the time it takes to feed him. He is taking baby bites & needs patience to eat. He was on an IV and feeding tube in hospital and his throat hurt from the breathing tube. Speech therapy is working on regaining muscle use of throat. Soft food now. He ate 25% of food 1st day and 50% on 2nd. They are supplementing with something like Ensure in an ice cream form. Turns out he broke his toe too. That explains the foot pain. The weather made the roads too bad to get there. I slept 16 straight hours. Exhausted. The weather made the decision that I stay in today and maybe tomorrow. Got to get myself upright, as my business and home are a mess from not being here. I think one thing we all struggle with is feeling completely responsible for whatever happens. Some of it is out of our hands.