Well, Lloyd fell (once again) and caught his ear and tore it in the fold behind it. It just gapped about an inch. So-o-o we had to decide whether to play doctor at home or take him to the ER knowing they would have to knock him out completely to stitch it up. It was decided that we would take care of it ourselves. In spite of his taking coumadin, the bleeding stopped very quickly. I took him in the shower to clean it off. Then we put neosporin on it . Then when he fell asleep, we put a warm washcloth on it to loosen any dried blood and more neosporin and taped the ear to his head to close it up as best we could. It is actually doing very well. His last accident he cut a finger and needed stitches. My son-in-law, daughter, and I took him to the hospital and my daughter-in-law joined us there. They tried to draw blood, couldn't, and had to sedate him to do it. Then they took x-rays and fooled around until he was waking up. He got the novacaine and by then, he was awake. I told them no more sedation - that there were enough family there that we would help hold him still and they could stitch him up. Even with minimal sedation, Brett still had to carry him in from the car and upstairs to bed. After his week in intensive care in April 2011 after a seizure and them slamming him with whatever drugs they wanted while holding me captive in the waiting room. He never recovered from that. I have decided there will be no more sedation unless absolutely necessary. And yes, that means NO MORE CT SCANS! He bumps his head quite often and has little marks and if he goes to the ER, they want to do a CT scan. They have tried to scare me into agreeing by saying he could bleed into his brain and die. I don't know who they are trying to scare, but it will take a lot more than that. Bleeding into the brain would be more merciful than what he goes through every day. I don't know about the rest of you, but I pray quite often that God will take him quickly and painlessly when the time comes. Anyone else out there have issues with sedation?
Interesting that you should address this topic...I also have concerns about this and even more so now. Yesterday hb had rectal bleeding with each bowel movement and is otherwise symptomless. I will get ahold of his doctor this am and I am certain they will want to do a colonoscopy. Early on in this disease my hb wanted to die from something besides AD, now he doesn't realize what AD is.
I have refused a colonoscopy for my husband's digestive issues because he wouldn't be able to tolerate the prep. The doctors seem to be understanding, though they repeat the recommendation occassionally so I can't blame them if something bad turns out to be wrong.
Linda Mc, my DH is relatively healthy so we haven't had to deal with any sedation, but from what you have gone through I know it would be a nightmare for us. I'm with you 100% about God taking him quickly & painlessly. It's not a death wish by any means, it's just a prayer.
In 2004 my dh had a defibrillater implanted. Every year he has had to go in, be sedated, and his heart stopped to see if defib is working properly. This year he is slated to have the batteries replaced (with sedation). Needless to say, I am concerned but I am between a rock and hard place. This I consider necessary. Two years ago he had colonoscopy, normal and no more ever, whatever. Shortly thereafter hernia repair. Every sedation I notice a decline. Perhaps he would decline anyway but why push it along. When the hematologist wanted to start his round of sedated tests to determine substandard hemaglobin count, that is when I took over and we don't see him anymore. Our PCP will monitor blood problems from now on and he is conservative. The only weapons the drs. have are tests and drugs. A necessary evil in our LO's case.
Guys, search this forum for topics on anesthesia. Search google! DO NOT GIVE ANESTHESIA!! It almost certainly will hasten decline and lead to problems. People here have refused to have defibs replaced, colonoscopies, pacemakers replaced, tumors removed, etc etc . YOU KNOW BETTER than specialists on this.
And PLEASE, dear friends, if you do not have your DNR's (do not resuscitate), get them. After the ER doctor put Lloyd into respiratory arrest April 2011and would not let him go because I had no DNR, I got one. I carry that and my power of attorney with me everywhere I go. No more interference from professional strangers! Shirley, we are having no testing done. It's pointless unless he is in pain and I need to know why. Pain does not include headaches because the immune system in the brain will cause swelling and headaches when it tries to protect the neurons from the plaque. I just give one Aleve a day for that. Medication - I do not give him anything that affects what clarity he has left. That includes sleeping pills. If I am exhausted, I may give him half of a 100mg Trazadone. That may happen once or twice a week. I tried him on Depakote, Depakote sprinkles, and Keppra. Done with those, too. They turned him into a slack-jawed slobbering almost comatose zombie. No thank you to that. He takes his blood thinner, 1 2.5mg Marinol, and 1 Namenda. I have tried to stop the Namenda completely, but have only been able to get him down to one a day. Without that one, he just doesn't do as well. There is a standing order from our PCP for an increase to 5.0mg Marinol whenever I think he needs it. While I am here, has anyone used Neurontin? I have heard it is good for overall pain and myoclonis.
Andy, the rectal bleeding could be from hemmorhoids and the doctor could prescribe a salve for that just in case. Lloyd had a colonoscopy before he was even diagnosed and there were a few small polyps. They wanted to do another a while later and I refused. They even sent me a letter saying he needed one by registered mail. Oh, well. ElaineH, I think here there are only prayers and no death wishes. At least, I hope so. (Death wishers, go away!)
Linda, what caused his seizure? My husband had 2 seizures after a choking incident and a subsequent dx of aspiration pneumonia in the ER. DH has NEVER had a seizure in his life and in fact is on neurontin which is an antiseizure med. It was the IV antibiotic that caused his seizure which then required he be hospitalized for a condition the ER doc created. After a week in the hospital, DH's cognition and overall physical health (he is very physically healthy, nothing except FTD is wrong with him) had severely declined. He regained his physical well being but has never regained the level of cognition he had before the hospitalization and he was not sedated al all during his stay. Now he has difficulty with recognition, reading and his ability to find/pronounce many words....never had these problems before the hsopitalization.
Fortunately his PCP doesn't even suggest a colonoscopy or anything else requiring sedation. He gets it and I am grateful that he doesn't make us feel guilty about our choices. But beware-DH's dentist advised me he needed 3K worth of work for gum disease and it was urgent the work be performed immediately otherwise it could kill DH. I advised the dentist that DH's dental benefit for the year had been depleted and that we would come back within 2 months. He then called us into his office, advised me that gum disease could kill DH and that he was going to require me to sign a waiver declining treatment and said "If he dies from a condition related to gum disease, you are wholly responsible". When I asked for an interim treatment (antibiotics, prescription toothpaste/mouthwash) he refused to prescribe anything.
Seriously! Your dentist is an ass of the highest caliber! I hope you find a new one who does indeed "get it" . I am sorry you had to be subjected to him.....
I also agree with no sedation. The only thing I have allowed for Lynn in the past is a chest xray to determine pneumonia and pulmonary embolism and blood work. He is on Coumadin, so he needs his levels checked often. I don't judge what people decide to treat, or not treat. Only they know their loved one and what is best for them. I know others would not treat for pneumonia, where I did and would again. It is a simple pill, not invasive at all, so I treated. We each just must decide what we feel is best.
As for a horror story on sedation.... there is a lady at the nursing home, one day she was fine, driving, taking care of her family and her home. The next day she went in for a simple surgery and her whole world changed forever. There is a long name for the condition she has, but I can't recall it.... she came out of surgery as bad as most late stage Alzheimer's patients. She can't talk, walk, feed herself, nothing..... I talk to her husband every day, he told me there are worse things than Alzheimer's. He told me I was lucky... at least I had a chance to say some goodbyes, at least I had some time to come to terms with what we would lose.
Wow!! had never thought about it that way...... I do now. I can't imagine trying to cope with all the changes, all the losses of "My Lynn" in a span of hours,,,,She went in fine!!….mind boggling , Tragic..... so yeah, NO sedation for Lynn.
LFL, I have no idea what caused his seizure. It was about 6 in the morning and we were in bed. The next thing I hear is him hitting the floor. I jump up and turn on the light and he is on the floor twitching and jerking with his eyes rolled back in his head. I just lost it. I'm yelling his name and nothing. My 17-yr-old grandson and his friend ran upstairs to stay with him while I went down to unlock the door for the ambulance. Two squads came. I told them he had Alzheimer's and took Coumadin and asked if they wanted to take all his meds with them and they said just to bring them. He was so out of it that they had a helluva time getting him down the stairs. Took 4 of them and he only weighed 135 at the time. My daughter and I got to the ER before the ambulance. I went to the desk and said he was just brought in and asked if I could go back. She said no, that they would let me know when I could. The next thing I know a doctor is asking me if there is a DNR. I said no, but that I was his wife and wanted no extraordinary measures taken. Without even knowing all the meds he was taking they gave him Versed, succinylcholine, Norcuron, and morphine. By the time I got back there he was not conscious and they had put in an airway. He had gone into respiratory arrest and the paddles were still on the cart with him. When I got copies of the ER report, it stated there was limited medical, social, and family history. There were 11 of us in the waiting room including his parents, his 3 brothers, me, my daughter, and daughter-in-law. No one ever came out to ask us anything. He ended up in intensive care and he never was as good as he had been again. When we brought him home, he couldn't even walk. My daughter and I carried him into the house. He was going to the bathroom in his pants because they would not take him to the bathroom in the hospital. He started walking the day we brought him home. He is going to the bathroom now if I take him. That experience is what made me decide no more sedation. He has had 2 more seizures
(oops) since then and I have not taken him to the hospital. I just hold him until they pass and he is just tired and a little out of sorts when they are over. Had I known I would never have taken him to the ER in the first place. So, screw any professional medical strangers who think they can bully me into doing something I don't want to do!!! He can walk and go to the bathroom with help. Everything else must be done for him. He cannot even comprehend hardly anything or carry on a conversation. Nikki, well put!! "Ass of the highest caliber" pretty much hits the old nail rught on the head!
Update on our doctor appt. for the rectal bleeding. He checked him out,did a digital exam,fecal blood positive, but his blood levels are good inspite of the amount of bleeding with a BM. No tears or problems in rectal area. He recommended a referral for a consult and sigmoidoscopy. No sedation needed for this and he is on the same page about not sedating someone with dementia present. Came home,had a BM, looks like he slaughtered an animal in the commode, he get very distressed when he sees the blood, I just have to get him out of the bathroom and clean things up. Would appreciate any and all prayers.
My husband had seizures for years after he was diagnosed. Absence seizures they call them. As you say, just hold him until they go away. No point in even calling the EMTs (I did, too, the first time, and he was in the hospital for a month!)
My husband took Neurontin and it did seem to help with jerking, etc. After he went to the nursing home (after breaking his hip) just before he died, they called me that he had a bloody stool and did I want him to go to the hospital. I said no. Then a few days later he had it again. Apparently both times it was after he had been constipated and they'd given him laxatives. I asked no more laxatives. He didn't have it again but then a few days later he had (I guess) a stroke and died in 24 hours. At the NH.
Andy my prayers are with you too. I am so sorry this is happening but we know we will overcome this to take care of our loved one to the best of our ability. My dh needs another total knee replacement but the orthopedic doctor that we go to understands why I am against this surgery. He said he would not do the surgery even if I wanted it because of the EOAD that my dh has. This dr. just lost his mother to Alzheimer's about a year ago. He totally understands. I am sad he has the experience of Alzheimer's pain but it makes him a more compassionate person to his patients. What a beautiful world it would be if all physicians understood it is not all about living,,,,, but dying with dignity.......
Thank all of you for commenting on this very timely subject. I am facing the same decision and I have decided that there will be no anesthetic for my DW if we can avoid it. However, most of us have learned to 'never say never'. She broke her foot two yrs ago and they literally had to put her to sleep to straighten and set it. That had to be Ok because it just had to be done. Sometimes, we are put in situations that are almost decided for us by the circumstances.
briegill*, Lloyd seems to be more jerky in the morning and with jerking comes falling. I think I probably caught him about 5 times this morning. I did give him half a sleeping pill last night and a sinus pill so that may have had something to do with it. I give him nothing PM. We have an appointment in March with his neuro so I may ask for the Neurontin. (((hugs))) to you. dean, you are right about sometimes being put in the position of having to do something for them that you really don't want to do. I am so anti-sedative, but he had to get 11 stitches in his finger and needed to be mildly sedated. They actually wanted to give him more when it started to wear off before the actual stitches and I said no. There were 4 family members there to help hold him down so he at least knew us and understood that we had to do it. They had to sedate him to do blood work. Next time I may ask what the blood work is for and is it necessary. I may say no. They cannot make us do anything. So many people never stop to think of that and are left feeling powerless.
Linda, is your DH on Seroquel? All of the drs said his seizures (much like your husband's, which by the way they don't consider seizures unless his body, arms, legs, etc become rigid) were likely caused by the seroquel. No matter how much I advised them that the only "new" thing he had taken was the antibiotic Avelox and the symptoms started immediately after the IV, they refused to believe it was the Avelox and said the "seizures" were caused by the seroquel. Yes, seroquel can cause seizures, but I am convinced that in DH's case it was not the cause, Avelox was.
It is VERY frightening to witness what we have-DH with arms/legs failing, eyes rolled back in head...but when it happened in the hospital the resident told me that it is rarely lethal and that they will come out of it within a few minutes. Looks scarier than it is. so holding him until it is over is a good idea.
LFL, Lloyd has never taken Seroquel. The doctor did say that Aricept could cause seizures so he doesn't take that anymore. Of course, after he told me that he turned around and wanted him back on it. I reminded him of what he had said and said "no thank you". Lloyd and I both have head colds right now and last I checked, he was still awake. I just gave him chicken noodle soup and I have been giving him Gatorade. I'm contemplating giving him half a sleeping pill...maybe even a whole one, but then he will probably be jerking and falling in the morning. So-o-o, I guess I will hold off.
ER doctors are trained to do all they can. Sometimes you watch them and they are like robots - on automatic pilot doing all the book say despite what the patient is saying. Part is training but a lot I believe has to do with fear of being sued.
We have discussed it before on other threads that the inhaled anesthesia seems to be more dangerous than a sedative, although from remarks above others have seen cognitive losses with sedatives.
If your spouse is able to use a mouth rinse, use peroxide - it will do a lot to help with gum disease. I use it a few days a month to keep away the gum disease or if I have a spot on my gums that bleeds, I will use it.
Last year when I took my wife to the ER for severe back and shoulder pain, the ER doctor would mention a possibility and ask me if we would treat it. If I said "no", he would not test for that problem. I was very impressed that he realized what we were going through.