Well, I guess I'd call them delusions************************
DH I believe is having dreams during his sleep (not to mention, "broken" sleep) that bleed into his entire day. He awakes and is relatively quiet for a bit, but when I start moving about the house he starts following me around and asking me where things are. Things he says he owns that he doesn't, things he thinks we've done that we haven't. Confusing my sister and my sister in law, where they live, etc. I used to laugh (privately, under my breath) at some of the things he's thinking, but in recent days he holds onto these false/mistaken thoughts for more than a day. Used to be that after an hour or two, but certainly never as long as the next day, these thoughts simply discipated.
I now ask myself, is this progression? Or, is this developing tolerance to meds....and an increase in dosage may be due? Might this result from less, and disrupted sleep patterns?
I'm irked at the timing of course. Just saw his Neurologist, whom I think is wonderful. Problem is, he is a professor of Neurology in Oregon, and only comes across the river to Washington a few days a month. He is booked out for months on end at the office in Washington so DH isn't scheduled to see him for a year. I went prepared with questions, etc. But this was NOT a prominent issue just 10 days ago when we saw the doc.
DH hasn't gotten out of hand, but I do sense he is getting more irritable the longer these thoughts go on and I am unable to pacify the thoughts, or make the thought "materialize." i.e. he wants to go get the truck off the street. Says its the biggest mistake he's ever made, getting that truck. He doesn't have a truck. And there isn't any place to park a truck on our roads (one lane roads around here). So, told him my BIL will pick it up and park it on their property. They live an hour away. When sis called last night DH was asking if her husband was gonna get the truck (I filled her in on this delusion), and she told him not to worry, that its taken care of, they have the truck, and its safely parked on their property. Ahh! DH is relieved.
With everything else going on -loss of insurance, selling the rental house, both my 16 and 17yr old are getting ready for college in the fall, Son's family arriving in 10 days to live with us briefly- I find I have a very low reserve of patience. Trying to quell these delusions in the midst of these stressors is tough.
sorry to hear you have so much going on in your life, and all of it stressful. Lynn would often fixate like this. It took a good amount of time but I have now mastered the art of distraction and diversion. He still makes up stories, but that too is normal. I go with them, adding to them when I can, he enjoys that. Even says he remembers it lol The hallucinations were a bit harder to take, but I did manage to even get “use” to those. I hope you can figure out what works best to distract and divert his attentions. Best of luck with everything! Nikki
Delusions are common in Alzheimer's Disease. Sometimes an adjustment in medication will help. If you cannot get an appointment with the neurologist, call his secretary, and be very firm and clear in your concerns. Tell her you will FAX a list of incidents to the doctor, and that you would like him to review it, and call you back. Make it a short, clear, concise LIST, as doctors don't have the time or the interest to read more than that from their patients. That should get you phone assistance from the doctor. If you don't receive a return phone call within 48 hours, call again.
Here are some articles to check out on Alzheimer's delusions:
Good point Joan, In between appt's Lynn's neurologist is always willing to have a phone consult. Joan I couldn't get the link to the first one to work, any tricks? Thanks
Hallucinations are a large part of our life. If people are working in our yard(hallucination) I will tell my husband not to worry. We are not paying them so they can do whatever they want. That satisfies him always. The list goes on and on. Just give him a logical reason why not to worry. He is always happy.
I can get medication from his gerintologist but I DO NOT want to give him medication just to make me happy. The hallucinations or delusions whatever you want to call them are just not a big thing to worry about, they are just a part of Alzheimers. I just have learned to ignore and survive. Sally
Diana, neuro's are always too, too busy. I don't know why, but they all are.
My husband's PCP disappeared on us recently -- heaven only knows where he went, the clinic won't tell us a thing -- so we switched, to a geriatrics specialist who is associated with the University Alzheimer's Disease Research Center, and who also runs the University Medical Center SOCARE facility. It took less than a week to get in to see him the first time as a new patient. They'd have squeezed us in sooner if I'd asked, but we didn't have an emergency, I just needed to get ready for when the prescriptions ran out. The new PCP is extremely knowledgeable about all things AD. I'd asked the ADRC folks for a recommendation for a new neuro, too (my husband's old neuro being less than helpful), which they did. When I mentioned this to the new PCP, it turns out he works closely with this neuro. It is clear he can get answers from the neuro without our having to get an appointment to see him.
So maybe you can find a geriatrics specialist to help you when you need to see someone asap ... ?
Sally, you can tell your words come from having lived through it. I will never forget when Lynn had his first real hallucination. Seeing things that were not there, not just a delusion about something. It is something I can smile and laugh at now, but at the time I was alarmed.
He was sitting at the dinner table waiting for me to serve him, and he started carrying on a conversation. I was only half listening, as this was par for the course. I then started to set the table and he asked where the guests plates were. Ok… it was just he and I there… so now I was a bit alarmed.
He then got very frustrated when I asked who was coming to dinner. He told me I was rude to talk that way in front of our guest! Eeeek…. He then got even more frustrated when he kept trying to tell me who they were, but couldn’t recall their names. He was giving very confusing clues to who they were and nothing I could say was able to distract them… it took me some time, but it finally dawned on me who we were having dinner with………… Pinocchio and Gepetto!!
I was a bit alarmed and decided I better call the VA doctor, they were of NO help. They offered to have him removed from the home and put in a psyche ward! WHAT!!!?? I called my neurologists office and spoke to the doctor on call, he suggested the same thing. In tears I asked him to call my doctor. My neuro, who knows and cares for us, called me right back and calmed me down. He said no one was going to lock him up, to keep an eye on him, and as long as the hallucination was harmless, to let it go… go with it.
That is what I do now, it is very interesting having Pinocchio and Gepetto to dinner, and I have to say… they were the best house guest I have ever had! LOL
Instead of using the "copy" and "paste" in the "Edit" section, try highlighting the link, hitting "control" and "c", put the cursor in the address bar, and then hit "control" and "v". Then hit "enter". I would tell you the exact place I found it in Google, but now I can't find it. :(
Thank you Joan, that didn't work.. I keep getting a cookie error. Must be the way my computer is set up. But I did copy just part of it http://www3.interscience.wiley.com and they have a ton of information on AD, going to go look through it now. Thanks! Nikki
Yeah, I know all about serious delusions. Second half of last year DH was psychotic, almost violent at times. FINALLY, Risperdal gave us our lives back. DH has always had some confusion, as is normal, but since starting the Risperdal his delusions have been mild and easily redirected. I'm seeing an escalation now.
I guess my real query is......... since we've never had dose increases since he started Risperdal in late Dec., does this seem like a typical indication that doses need an adjustment?
I like our Neuro alot. He was especially accommodating during med changes that he instituted last year, and he personally called back when I asked to hear from him. On the first visit he told me to tell the receptionist if I want to hear from Doc directly, rather than get a message via the nurse. However, around the Holidays, when DH was really difficult I called the exchange (Christmas Eve and New Years Eve) and was told there was NO NEUROLOGIST on call, so all calls were referred back to PCP's. Thankfully at that time the on call doc for DH's PCP was easy to work with. My problem is that I hesitate so much to call any doctor on holidays, nights, or weekends unless its a serious matter. The problem around here is that there is ONE neurology office at our medical center, with two doctors....one of which is ours, and he is only part time. Seeking a new neurologist to be more available is not an option where we live.
Diana, I was suggesting seeing if there might be a geriatrics specialist you could add to your husband's care team. They tend to be much more readily available than neuros, and usually very knowledgeable about all types of treatments including the anti-psychotics, so a geriatrician could pitch hit when the neuro can't be reached right away.
And by the way, if I were you, I'd take the neuro up on his offer to talk to the receptionist to get hold of him directly. I really appreciate your consideration for doctors (my father was one, and very few people have the courtesy you do) but still, he wouldn't have suggested that if he hadn't meant it. If you need help, you need help. The good ones are there for you when you need them, and trust me, their families are used to it. They do NOT tell you how to reach them if they don't want to be reached.
When my first husband was dying of cancer, the head of the oncology department (talk about busy!!!) told me if I ever needed him, to call him, and gave me his home phone number. There came a time when I did need him -- my husband was in excruciating pain in the middle of the night, the hospital was getting the run-around from the doctor on call, my husband's oncologist couldn't be found, and the nurses wouldn't budge without a doctor's orders. I called him in a panic. The dear man took charge, gave orders to the nurses, found another doctor who would come to the hospital, finally tracked down the AWOL doctor on call and read him the riot act, and kept calling me back with progress reports and reassurances. Plus he dropped by the room first thing when he got to the hospital the next morning, and repeatedly told me that I had done the right thing. (There's a special place in heaven for that man!)
My wife had vivid and scary night time hallucinations six years ago. She was seeing prowlers outside the bedroom window and people walking and standing in our bedroom. Nobody specifically, just generic people. This all in pitch black darkness. If I turned on the bedside light, the spooks went away and she went back to sleep. They were so real that she was wakeing me to go investigate the prowlers. After doing just that several times, I realized the prowlers were phantoms of her mind.
Her doctor prescribed a minimum dosage of 25 mg of Seroquel at bedtime and that shut off the hallucinations like a switch. She still takes that dosage of Seroquel and hasn't had any hallucinations since. Any doctor can prescribe that medication.
I was told that because Lynn has an "altered mind", only a neurologist (or qualified specialist) was qualified to give Lynn a prescription for a mind altering drug = seroquel. Maybe that is another thing that is handled differently by state? I'm not sure? But the VA doctor agree he needed to be on it, but he couldn't prescribe it.
Diana , I agree with sunshyne, the doctor would not have told you to call, if he hadn't intended you to use his services. I have several neurolgical disease and spent a good 2 years researching and searching for a doctor that I clicked with. It was well worth the time. He is close to two hours away, but again, worth it. I have been seeing this particular neurologist since 99, and he is as much my friend as he is my doctor. When Lynn was diagnosed, I immediatly knew he would become Lynn's doctor as well. From the start, he has made it clear he wants me to call. If it is late and not a major problem, I always wait until morning to call. But if it is serious I have no problem calling.
As far as the medication, Lynn has never been on that particular drug, but I would imagine it is the same as any other drug. Perhaps an increase in dosage is all that is needed. Take care, Nikki