Medicated heavily, or hallucinating? that is the question...

jeannegibbs, thank you for responding. It seems perhaps we have a lot in common so to speak. My mom was diagnosed in 2001. "Dementia/Alzheimer's"..that was the diagnosis. For many years she was the same, and she lived alone in her home until this past August. One of us was there every day for a few hours, but she was good and do to vision impairment wandering was not a huge concern. We were however always prepared for it. My mom was great, appreciated the help, but liked her alone time too...and she did very well.

It was not until this past August that she took an immediate turn. Every month since then she has progressed in some manner. She no longer knows who I am, but she does know the names of her children....She just does not have any idea where they are and why they don't visit....and so it goes. The Dr. we have is great, very engaged and we all like him very well....He is however; not too big on drugs, so in that regard it has been a struggle. He is on board. My siblings and I want her to be in hospice at home.. The dr. does not seem to think we are there yet. I am thinking of having her evaluated anyway and perhaps they can pull him on. I know if we look at her and the rapid decline, I cannot guarantee she would be alive in 6 months.

For many years she was in the same stage and her life was good. We took her everywhere and enjoyed life. I am still shocked at how fast it all turned around.

sharonmit, if you are working with a knowledgeable and patient doctor, that greatly increases the chances of finding drugs that will help keep your mother safe. But that is not always possible. Keep trying!

Sometimes when my husband's night pills didn't seem to be working, I'd find one under his chair when I moved things to vacuum. Other times I never did figure out what went wrong.

It was my intention to keep my husband home as long as possible. But I never promised him that. I always promised I would never abandon him and would always make sure that he had the best care possible. In his more lucid moments we sometimes talked about the possibility of moving him to a care center if I couldn't give or arrange for him to have the best care at home. We were fortunate that his symptoms stayed mostly in the early/moderate stage (with the help of drugs and other treatments) for years, and then went rapidly downhill at the end. He died in our bedroom, on hospice, holding my hand. I'm glad we could do that, but I'd never promise it and I'd never be critical of persons not so lucky.

Thank you to all for your reply's. It means a lot. I know of no other person in my circle caring for their parent, so while they are supportive, they do not truly understand, and I never want to be a burden.. So, I appreciate this site.

Jeanne, odd you mentioned Lewey body dementia, I have been reading up on it. She was not diagnosed with that form, but she shares quite a few attributes. My mom can wake from a dream and believe she is in it, and acts it out. The danger there is that she has no idea who I am when it occurs, and I have to be careful as I can become part of her dream...if that makes sense. Plus, my mom will get so frightened at night she will stand on the bed to get whatever it is she thinks she is after..

We are working to get a good balance with the drugs, but the last two weeks or so have made me realize I may not be able to care for her until she passes away. I know the disease has a direction of it's own, and I can work with that just fine. It is the behavior that is dangerous to her that has me very concerned. I guess I just assumed I was all in until the very end, but realizing that may not be possible is difficult. I am hoping we can get it under control.....

Funny, you have heard of Murphy's law right? LOL...I wrote my post last night stating the drugs were helping her sleep....I jinxed myself...She got up at 2am and was up the entire night..!

When mom started hallucinating and up all night -happened like your mom, in short period of time.
She is in respite while we remodle, don't think I'll ever be able to bring home. She is usually sweet, quiet and complementary. Sometimes (after new meds...or not) she will go into an episode; thow food, try to turn table over, throw silverware, hit nurses. They sent her to psych hospital to wean off and check meds. At first she was almost comatose, then she would throw food and argue with a patient.
It is so upsetting because now what? She is going back today to AL and I'm afraid it will keep up and they will kick her out. Doc told me they just need to learn how to deal with her. I don't think the workers feel that way. They just want her to be "good". It is a memory care unit....where would you go from there?

Sharon, My mom gets 2 Seoroquel at bedtime and sleeps through the night unless she has a UTI. However, she cannot function on it during the day. Thank goodness she is in a wheelchair now as I don't know how I would be able to care for her otherwise. She isn't capable of doing anything for herself, but still has the urge to always be doing something. This is what got her in trouble and falling down all the time. She also has PD and it made her legs weak.
She is a handful all day long, but with her new wheelchair I can park her in front of the TV and put towels on her tray and she will play with those for hours on end.
It's definitely a tough call, but if you want to continue to care for her, you will have to allow the meds so that you both can get the rest you need.
Give them a chance and see if her body adjusts to the dosage. It takes time and patience to get it right!

The psychiatrist put Mom on Trazadone for stopping the wandering at night. She has slept every night since. It's been about 6 weeks or so. Everyone has to sleep, especially the caregiver.

Tradeoffs are so common and so distressing in caring for someone with dementia. In Lewy Body Dementia, for example, often there is a tradeoff between what will best control the Parkinson's symptoms vs what will help cognition. We want both, of course!

You don't want your mother anxious and frightened, you need her to sleep through the night, and you son't want her "snowed." It is possible with the doctor's guidance you can adjust the dose a little for better overall results. It is also possible that as your mother's body gets used to the drugs the side effects will lessen. And, unfortunately, it is possible that you will just have to make a choice of the least distressing option.

Keep in mind that it is the disease that creates these issues. It is Not Your Fault. So, sure, feel bad. But don't start feeling guilty!

I totally get it. I felt the same and finally took mom off a lot of the heavy meds and stayed with low doses of lorazepam and Advil pm. But mostly for her safety because she was not walking to well under all those meds. The sleep thing was horrible and it almost took me over the edge...so you definetly want to weigh your options. Which is the worst of both evils. Plus if she is doing better and not so scared that's a positive. But be careful of some of the medications , the elderly are so frail and some drugs are not safe for those with dementia. I hope you can find something that works. God bless.

I feel your pain here. My Mom also had hallucinations and such. I found that I'd give her Ativan (low dose) to help get her to sleep. Its non habit forming and short term acting.

I hated the zombie Mom I'd have after giving her Seroquel or some such medication. But, it was nice to get more than 2 hours sleep at a time.

Hard choice and trade off.

My advice: check in with a Hospice RN. See what they recommend.