Hello, everyone. I've been on this site before but this is my first call for advice. First a short review. My wife has early onset ALZ. She's beginning her seventh year now. She requires help with dressing and advice on absolutely everything. Can no longer wash dishes. Has had trouble following diretions for some time now. I can't understand what she is trying to tell me most of the time. She is physically in perfect health except for . . .
My question of you that are able to advise: In the last week, she has begun to believe that the people in the TV are really people in our house. She'll hesitate to come into the room when she hears their voices.. She has begun to see people in our home that are not there. We live in a tiny place; easy to navigate. She looks at rooms as though they don't seem to be "right" /doesn't recognize them. All of this has come on rathere suddenly in the last few weeks. Fortunately, she is very sweet and trys to follow my advice. Yet she can only seem to remember the last word I might have said and she repeats that last word at every turn.
I'm guessing were entering the severe stage. I'm not sure what to make of this. Do any of your believe this to be an unusual turn of events? It came on suddely. Should I expect it to worsen rapidly? Any advice on how to handle her confusion? In this small town we have only general practicioner doctor. This is new territory and manageable but what do you make of it?
Generally, hallucinations such as seeing people who are not there are symptoms associated with Lewy Body Dementia -http://helpguide.org/elder/lewy_body_disease.htm
It is similar to Alzheimer's Disease, but instead of plaques and tangles, the brain is attacked by Lewy bodies - "abnormal microscopic protein deposits in the brain that disrupt the brain's normal functioning causing it to slowly deteriorate".
Your wife's dementia could still be caused by Alzheimer's Disease, as hallucinations are sometimes part of AD also. It is just my own opinion, but it sounds like you need to pursue a more specialized doctor. The link to Memory Disorder Clinics in Your Area on my home page is broken. However, if you type in your State and Memory Disorder Clinics into Google, a list of specialized clinics will come up. Example - Florida Memory Disorder Clinics or New Hampshire Memory Disorder Clinics. It would be well worth your while to travel to a specialist who can give your wife the proper treatment. My husband's neurologist is a 100 mile round trip, but we didn't get the correct diagnosis and medication until we found him.
Because progression of these diseases are so varied in all respects, it would be a good idea to have your wife seen by someone knowledgeable in this area. Are you near a university medical school? Call and see if they could evaluate your wife. Hallucinations are very common with dementias but I know you want to hear if there is something that can help her. In the meantime, try to distract her as much as possible when she "sees or hears" others. This is a terrible journey we are traveling. Sounds like you are very patient and that is what is needed. My prayers are with you.
I agree with the advice given. My mom developed some of this type of behaviour..and in her case she could phase in and out of it...She thought my dad was Santa and that Santa gave her a little hand full of silver dollars..that was my dad that did that. She did not know my dad at times either, waking up in the morning to find that "fat man with white hair in her room again" She would also claim there were people, though she never saw them, getting into the house and stealing things..or they were in the yard making noies ( kids next door) That sort of thing. She would get really nervous too about this sort of thing.
Then I would absolutely make another apt. at the Mayo Clinic - it's possible they can adjust, change, or give new meds. to alleviate the hallucinations. In the meantime, I also agree with the "distraction" advice. It is best not to argue or try to convince her that the person she sees is not there. That will only agitate her more. I knew a woman who would sit at the dinner table and talk to, as well as try to feed, the child sitting next to her. Of course, no one was there. When she insisted the child went outside and she had to look for him, we took her for a walk around the house. When she did not find the child, we told her that he went home with his mother. She was satisfied for the time being.
You did not mention what meds your wife is on. I think you need to talk to her doctor about this issue and see what meds might help. The issue then becomes, how do you keep her calm and relaxed,but not zonked out. My wife was not having hallucinations but was getting very agitated and in fear. The med issue will be a balancing act with taking what side effect you can live with to get the benefits you want.
paranoia and hallucinations can be part of the concerns while dealing with this disease. many here have had to deal with the people in the mirrors, stealing by unknown persons, etc. a talk with her dr may be in order to reevaluate her meds to control this. most of us who have dealt with this go for the meds for a while to iron out the delusional behaviour and then maybe you can take her off it she gets better. it doesnt help to try to argue that its delusions and not real. its real to them and can be very frightening. my DH talked with statues, himself in the mirror not knowing it was himself, saw people eetc and as long as he wasnt afraid or aggressive i just went with the flow. but had meds on hand to give if his demeanor changed negatively. in time this behaviour changed for the more positive and he no longer does these things as hes in late stage and mostly bedbound. i hope you get some advice from the dr = divvi
The other aspect of your question was concerning visual perception. This is also another aspect of Alzheimer's. Some spice can't see things on the sides of them at times (not all the time, just some of the time) and others can't see the floor unless there is a white rug on it. If there is a dark rug, they think it is a hole. Others think objects are too close, or too far away. There is no treatment for this, other than buying some white bath mats to place down where she is concerned to step. And patience. Lots and lots of patience.
Also, as Divvi says, you go with the flow if there is no agression involved.
What a lot of us have done is this:
Accept new radical changes. They may come and go for a while, or they may get worse. This is one of the hardest things we have to do as spice - We just have to be there for them and act like this is normal behavior (unless they get agressive or violent). Some medications make other actions worse, so watch her carefully if more drugs are prescribed.
I know this is a very bumpy road, and filled with potholes....and it will only get worse....we are here to help as much as possible, the help you over the potholes as best we can.
Admin, Mary,Divvi, Shirley, Moorsb, Mimi: Thank you all. We're along way from doctors and this is not a serious problem so-to-speak. Your advise is comforting. If this worsens or effects our sleep then I might pursue meds. I was also wondering does this happen at any particular way along the ALZ path? I.e. moderate, severe etc.
The comment about the dark hole effect I think is spot on. I'll either leave light on or move white rug into the dark space. Very good. This is why we come here. I'm very grateful!
My dh cannot be termed "severe stage". He is still "moderate" and he is very paranoid, claims certain people come into our house and take his stuff. We are pretty much alone for most of the time. When I look back over our married life, I have to say he was always a "worry-wart", imagining the worst.
Today it was raining cats and dogs and very windy. DH was actually frightened, thinking our home was going to wash away. I just talked to him about other things and even took him to the grocery store in all this rain. Was much better when we returned. Resumed his weekly practice of preparing our trash for pickup. Always a perfectionist, this trait is now exacerbated. Newspapers are bagged and taped and sometimes boxed. Stuff looks like it is ready for the post office, not trash.
To answer your question about your wife, I would say that she could be just in the moderate stage for many things and perhaps leaning towards severe in others. First thing someone told me when I joined this family was "To know one Alz patient is to know one Alz patient." It is so true. Patients overlap stages. They are all unique.
Thanks Shirley. I wish my wife would have to compulsion to do something. She just follows me everywhere all the time. Poor thing. Thanks for your reply. I'd not heard that saying. I can see how it is true. I'm so tired of this and there is such a long way to go. It's a crushing grind in so many ways. We're in Minnesota and it's really dry. Not normal at all. We'll get blizzard'd soon enough I'm sure. Thanks to all. Stay strong.
Thank you too Mary. Regarding your comment on bumps and pot holes, I think that is what I'm going to wrap and give for Christmas. Pot holes for the whole family. Sorry, it just struck me.
I'll put in a plug for the article referenced in tHe home page of Joan's site, "understanding the Dementia Experience". A lot of us have found it very useful