My mom has had some dementia the last few years but it hasn't been a major issue until this week.
She lives with my father who my mom now thinks is her mother. She is calling everyone in the family asking if we know where dad is. We took her to the ER to check if there was a stroke and have other blood/urine testing to see if there were any physical or chemical imbalance issues. Nothing showed up though we're scheduling an appointment for her to see her primary physician tomorrow.
Sometimes, she briefly recognizes my dad which leads to her hallucinating a woman in another room. When we were going to the hospital, she would ask "what should we do with her?". Later in the day, she recognized my dad and said the woman was gone. But, the next morning, dad was again her mom or a woman and she was calling around to find my father.
Initially, my sister tried to convince her dad was not her mother. This just led to more confusion and frustration. She sometimes seemed to understand only to become confused again. I think I've convinced them that they have to go along with her, keep her calm, and comfort her as best we can. Her reality has changed and trying to convince her only upsets her.
We're hopeful her doctor can help make the hallucinations go away because my father is my mom's caregiver and, if she doesn't trust him because she doesn't see him for who he is, I fear she may do something like leave the house or something else to put him in harm's way. Dad's health isn't great either so I'm concern about him having to deal with all this.
This is our families first experience with dementia. All we've had the last few years is mom's forgetfulness and confusion. Any advice is appreciated.
You have a lot to consider and look into concerning this whole situation. Is someone staying in the house with your parents through at least tomorrow? People with Alzheimer's cannot always be reasoned with back into reality and when they are it often does not as ya'll have learned. Continuing to fight their hallucinations only leads to more confusion and frustration.
I think that your sister needs to get on this site and both of you ask your questions about what is going on. Both of you really need to be on the same page in this. I'm sure this is upsetting your dad as well and he needs ya'ls support too.
There is a search site box in the upper right hand corner of this page that is for use to find out more information from this site.
Here is a link for a search of the word hallucinations.
https://www.agingcare.com/search.aspx?searchterm=hallucinations
I hope this helps and I wish you well in your ongoing journey. You are not alone.
We're both live close which means we probably can rotate staying over.
I'm sure Dad has kept a lot from us as far as Mom's confusion the last few years. I remember her mother's dementia when I was a boy. At the time, I think they called it "Hardening of the Arteries" or some such. I just remember her being extremely paranoid and thinking the FBI had camera in every electrical socket in the home.
Thanks for the suggestions for reading. I think a part of me denied what we've been seeing with Mom the last few years. I do wish I was better prepared now but I'm guessing no one is every fully prepared for something like this.
Feel good about the fact that you are on top of things now. have a plan in place to support your dad and get your mom the help she needs and coordinating all of this with your sister as both of you get a crash course from reading online about the journey you are on and what lays ahead.
I wish you and your family the best in all of this. Have a good dinner and discussion about this. Keep in touch. Let us know how you are doing and how things are going. Try to take good care of you in this very stressful crisis time. It will all work out.
Whether it was the distraction of the celebration or something else, Mom had a nice birthday dinner. She knew everyone (including Dad). She was a tad confused at times and slow in adding to the conversation but that's been the norm for some time now. She was happy and that made the rest of us happy too.
After dinner, we sat down and discussed the situation. I couldn't leave a message with her doc tonight so got to get a call in to her first thing in the morning. I don't know if she'll want to see Mom or will refer her to a neurologist. Either way, our goal is to get some answers and enough information to try and plan what's best for Mom and Dad both now and the future.
We spent about two hours going over her meds. I might be reaching but I thought it was wise to try and, at least, make sure she's not having any kind of reaction to mixing up her medication. She's on ten different prescriptions for everything from her diabetes to high cholesterol. We found out she hadn't been taking all as prescribed and even mixed up some meds recently which means a double dose of one and not taking any of another. Add into the mix supplements and OTC stuff like B-12, fish oil and lots of other stuff I want to share with her doc to make sure isn't contributing to the problems.
Thanks to all for the advice. I'll continue to update things as I find it comforting to read the responses.
One thing I want to ask is about a necklace or some kind of first-alert recommendation. I know lots are out there. My parents don't have much money but I'd sleep better knowing they had one. Also, we sorted her pills for the week in a container which has a morning and evening side for each day. Since Mom has some to take before bed, I want to find other options or systems which can help her moving forward keep her meds sorted.
Thanks again to all.
On Monday, she was again hallucinating my father was a woman and started calling the entire family asking where Dad had gone. My Sister went over in the afternoon and found all the work we'd done to help sort her meds was undone because it wasn't the way Mom did it before. The problem being she could not tell her how she sorted them and proceeded to get everything mixed up with the result she wasn't taking any of her meds. That night, Mom went outside with a flashlight looking for Dad in his car. Luckily, she walked right past his chair in the process so he watched her. Mom is pretty unsteady and walks with a cane so we don't worry of her roaming off as much as falling down.
Yesterday, she was to go to her primary care physician and I took a day off work to help. Mom refused to go and was very hostile about it. I explained that we all loved her and wanted to help her. It didn't seem to matter. I explained the ER wanted her to go to her primary doc after her visit there on Friday and she'd forgotten she ever went to the ER four days prior. I took her OTA med list along with her prescriptions to her doc to see if anything could be creating a reaction. I had found via a website of some potential issues and was hoping she'd help me to know if so many meds might be part of the cause. I was only able to see a nurse who would not help in any way. All she would do is tell me Mom needed to be there in order to find out what was wrong. I was angry and frustrated that she wouldn't let me talk to the doc about any potential med issues.
When I got back home, Mom was again tinkering with all her meds but not taking her morning doses. She's getting on a subject, like sorting meds, and will repeat it over and over for 2-3 hours. She the same in conversation. She asked about a shot she had in her arm that created swelling to Dad who couldn't remember it happening. Mom asked him over and over about it. It didn't seem she was forgetting she was asking about the same thing but that she can't get her mind off it once on it.
To prove we'd been to the ER just our day's prior, I produced the discharge papers to Mom. She first thought them faked then accepted them. We got her in and they did a few of the procedure they'd done on Friday. This time, they added an MRI. The did find a minor UTI which, I understand, can cause hallucinations. Her white blood cell count was a little elevated and her blood showed some dehydration. Her MRI didn't show she'd had a stroke.
Her doc recommended transferring her to a hospital with a geriatric psyche department so they can evaluate her. They were unable to find one after the 10 hours we were at the ER so moved her upstairs for the night and will try again today.
I am hoping getting her off her meds and treating the UTI will help with the hallucinations. I know that still leaves the dementia and we'll have to figure out our next step once we know more.
If a bad medication reaction can be rules out, then your mother is suffering from dementia and needs to be placed in a facility, so she will not harm herself or your father. This is a hard time for you, and you have my sympathies. But it sounds like a medication issue to me if the hallucinations are severe.
I've not talked to her doctor as she was just admitted late this afternoon but understand it to be a 13-day program and that they'll get all her meds out of her system, treat her UTI and begin the evaluation process. I assume, if there is a way to treat her dementia, they'll explore drugs and need time to evaluate them.
I don't know how long it takes for drugs to leave the body. She's been off three days now from most. I hope to talk to someone there later tomorrow about their course of treatment.
Mom was very angry but she understands we love her and think this is best for her. She totally disagrees that she needs to be there or that there are any issues. I just hope that, in the end, a diagnosis occurs and a plan to help soon follows.
Urinary tract infections can very definitely be responsible for odd behavior. My aunt hallucinated when she had one -- that was the main symptom. She did not have dementia. My mother has dementia and all her symptoms were much, much worse while she had a uti.
Just getting the uti cleared up should be a big help.
But with or without a uti, your mom has dementia and needs to get her drugs evaluated and on a good plan. She will most likely NOT be able to be in charge of them again.
My husband did not go to a psychiatric center but his very competent geriatrician took him off nearly all his drugs shortly after his dementia diagnosis. (That is, all except the ones recently added by a behavioral neurologist.) Gradually most of the drugs were added back in.
One of the primary reasons my mother could not continue to live alone with her mild dementia was her total inability to manage the few drugs she needed. If she returns home, can your father mange giving her her meds? Can you or your sister assist with filling her pill box?
I am very glad to hear progress is being made. Please, do keep us informed about how this all works out. We care. And we learn from each other.
Sis and I are happy to handle the pill sorting if Mom would accept it. I bought three of those four-times-a-day boxes so could do three weeks at-a-time. It'll depend on Mom as to whether or not she accepts her pills that way.
If these issues are not resolved, then I think we'd have to consider options such as getting someone to come out who Mom would accept and trust. Beyond that, I don't know.
Thanks to all for their comments. I have so much to learn and will continue to share what's going on.
She's had a psyche exam today. I suspect we'll get the results on Monday. I am hoping the doc will begin meds to help so they can see the impact before she is discharged.
Things are progressing. I am cautiously optimistic. Our next visit is Sunday afternoon.
I totally identifiy with the "lot of things to learn" part - it is hard and scary and a steep learning curve but you have to get as well informed as possible. Hugs, and hoe pthings continue to go as well as possible.
What I don't want to see happen is Mom fighting Dad over this and I can easily see that happening.
Here's another observation that I wanted to see if others had experience with...
Mom gets on a topic and just won't let it go. For example, she mentions to me that she had some coffee yesterday and that it upset her stomach. I said I would tell the nurse to get her some decaf moving forward. Mom continues to talk about the coffee. Even when the subject has changed, she goes back to talking about the coffee. It's not like she forgets she's told us but that, once she gets onto something, she can't move on. Distraction really doesn't seem to help as she returns. It's not the end of the world she harps on one thing but I see it driving Dad nuts sometimes. :)
My husband took a lot of drugs. Managing them was a tough job. One of our daughters came over and put them in the weekly dispensers (and did mine as well) which was a huge help to me. (We could only do it for 2 weeks at a time because of when the insurance considered them ready for refill.) I gave the pills on their schedule. I bought a large cosmetics box with a lock and locked up the pill bottles. You do what has to be done, for safety.
As for the obsession with one topic, sigh, that isn't easy either. You are certainly doing the recommended thing by trying to distract her. Sorry it isn't working. What about talking the subject to death with her? Boring? Oh my yes! But you are spending time with Mom, and that is part of your goal, right? So tell her about the time you had an upset tummy from coffee or you friend who only drinks coffee after she has had something to eat or discuss the way to properly brew coffee or how many people use sugar in it. If distraction doesn't work, how about joining her in her world for a while?
BTW, the topic-obsession might be a passing phase. By the time you feel you can deal with it she may drop it and be on to some other quirk.
Learn as much as you can about dementia. Help your father learn about it, too. You'll both be dealing with it the rest of your mother's life.
Today, I received the evaluation on her from last Friday. According to the report, he mentioned temporal lobe dysfunction and impaired executive functioning suggesting frontal lobe dysfunction. He mentions her MRI showing mild diffuse atrophy along with small vessel ischemic disease. He doesn't feel her performance was entirely based on vascular dementia but more consistent with Alzheimer's.
Though I am new to all this, I've found that dementia can be cause by multiple things. I don't know if they can say it's 70% Alzheimer's and 30% vessel-related or if it really matters at this point.
They've put her on Aricept though don't know why this instead of another med. I hope to find out more tomorrow. We're hoping she gets to come home on Wednesday. They also mentioned an anti-depressant and something to help her sleep.
The evaluator mentioned quite a few things like that she doesn't need to drive without being tested. He suggests a memory box/book. He mentioned trying to get Mom more physically active.
As much as I would like to be prepared, I know it's impossible. My goal is to help make Mom as happy as possible once we get her home and help Dad adjust. I continue to read this forum and appreciate all the feedback many here have been willing to share.
Mom is home and doing well. She is now using a patch (don't recall the name) and is more like herself. She is not longer hallucinating so we hope that was more about the UTI. She is sometimes forgetful and gets confused but nothing like before. The meds (and not having the UTI) seems to be keeping things in check.
A few weeks ago, I received a call my father was taken to the hospital by ambulance for having an apparent heart attack. Once in, he showed stroke symptoms and had all the usual tests for that. But, within a short time, many of his symptoms returned to normal. The doc said it was likely a TIA (mini-stroke). After seeming more like himself after a few hours, he started acting confused. I asked his nurse to be sure he had a urinary test and see if there was a UTI.
By the next morning, they found he did have a UTI and it had been the cause of his TIA. I had no idea a UTI was so serious for both my parents but have gotten them test strips to use and are making sure they drink plenty of liquids. The problem is that neither noticed any symptoms.
Scary stuff. My thanks again to all for the information. I have been reading this site often since this happened and the information is outstanding.