Every day is the first day with dementia for Mom.

My mom said for many years that she had felt another brain cell die. The doctors said that it was not possible for her to feel it, but every time she told me that I could tell her memory had gotten worse. She still had some of those brain cells though because she could always find her bedroom, the kitchen, the tv room, the porch, and the living room chair, which was her favorite place to watch out the window to see what the neighbors were up to. She could also always find the phone to get herself into trouble. She could even go out behind the house and shut down power to the air conditioner when she was a little cold. And yes, it is over and over the first time people realize their memory is getting worse because they don't remember yesterday.

I am the original poster for this thread, so thank you to everyone who has responded. You have provided so much good information. She has been on a low dose SSRI and taken Xanax on and off for years. The anti-depressant does not do much to help her mood while the Xanax is good for briefly addressing her fear and anxiety. We had our fist appointment with a geriatrician at the University in town and we were very pleased with him. He wants to take a slow approach to tweaking her meds, so we can see what really makes a difference. His first move was to get her off Metoprolol which she had been taking for many years, We have done this, BP is still OK and there may be minor improvement in her waking trauma. Next steps are to look at the anxiety meds, sleeping med and antidepressant. We were so encouraged when two days ago she had a really good day, put a couple curlers in her hair, chuckled a bit and slept through the night! Yesterday, though, I had to go out of town for a few hours and she was very distraught, needed a facetime and updates while I was gone, and was disturbed the rest of the day and throughout the night. At lease we got a good nights sleep and know that good days are possible. Thanks again to all who responded.

You left out “ after dinner” when we descend into hell again, tears and crying, darn near impossible to get her to the bathroom and bed without losing my cool.

Hello B -

Wow- I could have written this post. We are 7 months in to caring for my 92yo mother-in-law. Since her husband died two years ago, she has steadily declined... AL worked for a year, until she became so forgetful that social relationships became disrupted. She finally left a plant in the sink with water running, and flooded her apt and the one below.

She has subsequently moved in with us, and now has no short term memory to speak of. Every day is new - along with confusion, constant questions, anxiety and irritation/grief at her predicament. She has night terrors, and forgets why she is here regularly. Wonders where loved ones went, and is upset at forgetting the names of her children. I haven’t seen 50 First Dates, but my partner and I frequently reference the Bill Murray movie ‘Groundhog’s Day’ - each day resembles the one before, in that it’s a blank slate every morning. It us exhausting, but each day is another shot at doing it with a bit more creativity, compassion and patience. Some days go better than others ❤️

What has helped:
1) anti-depressants, specifically Paxil, which has reduced anxiety and perseveration.
2) keeping to a schedule - the external structure of predictable events (meals, naps, day program, bedtime) has helped to settle her free-floating anxiety.
3) 2 days a week of day program. The socializing gets her out of her head, and although she can’t recall it, it seems to brighten her affect generally (though she complains bitterly about having to go since each time is new).
4) we have made charts of family members and events that she can look at, which seems to calm her.
5)Humor, Humor and Humor. Hard in the face of all her doom, gloom and anxiety, but it’s the only antidote we’ve found so far.

Its hard, really hard - and I feel your pain, man. For us, for as long as we can, we want to give her a family and let her feel loved. At a certain point, she’ll be too disoriented to comprehend even that, and then a change will make sense, and we will have our sane life back. Until then, pretending we are in a kind of surreal comedic movie makes maintaining a sense of humor a little easier 😊 Good Luck and best wishes to you.

-A

If you a religious person or not, try bible scripture recitation. I tried this with my late mother when all else failed.

Melatonin 3 mg. My mom has dementia & her doctor said it's fine. It helps her keep the day & night rhythm & does not interfere with any of her meds. Also it isn't another prescription, it's just OTC. She does wake up a bit but not as much & for similar reasons. Fear & anxiety. She doesn't want to be alone. In the earlier stages & taped a big note on the wall that she was at my house & I loved her. But it's progressed & she can't read anymore. She comes in to watch tv with my daughter then falls asleep. She is comforted by the nearness of others.

Yes and I know how exhausting this is my mom is 94 years old and has good days and bad nights. I just hope you can get rest too, if there is a way to get someone to help you at night with your loved one would be great, but I know that's not always the cause, just know that you are not alone. My thoughts and prayers are with you.

It sounds like everyone is dealing with a horrible state of the movie "50 First Dates". If you haven't seen it yet, I recommend it 100%. It will add a bit of comedy to the situation we are all dealing with when it comes to dementia. It is TERRIFYING for them to know that they do NOT know the everyday things. I still remember the look in my mom's eyes the first time she couldn't tell me my name or her own name at that particular moment. Humor is the ONLY way to work with this situation in my opinion. As soon as they see you upset, sad, angry or any emotion rather then, "oh well, ______, it is difficult to get old........the Golden years have come at last, the Golden Years can kiss my ass." ANYTHING to make them SMILE in that moment will possibly break through the FEAR. Fear is what all this is about. Fear that they know they are losing their mind. Fear of death. Fear of not knowing where they are. Fear. Fear. Fear. Once they know this from you, that you are there for them a small, tiny, little bit of that fear will drain out of them. Another suggestion is holding their hand and saying......"I love you SO much. I am here for you to take care of what you can't do anymore. I know you are upset about being old and being forgetful and sad that you can't do what you used to do." NOT all at once, but one or two of these things to reassure them that they have HELP through such a tough time in life.
Once again, Please take an hour or two to watch the movie, 50 First Dates and it will give you a look into what a dementia person is going through. I have learned to live in the moment with Mom. I do what a kindergarten teacher does each day with her 5 year old class. (walks in, welcomes everyone, tries to calm the fears of kids she KNOWS are having trouble with the transition of being in her class away from home, tells them what day it is, what the weather is like outside, talks about the day, month, year, tell them what the season is, who the president is, etc.) Then she sings a VERY easy song with her class, one your parent knew back in "his/her" day, or puts on the CD or whatever of their favorite music. YOU take the reins before they even have a chance to talk about anger, sadness, fear.....it all helps with where they are at that moment. I have reruns of I Dream of Jeannie, and Bewitched on TV, if music isn't what brings joy. Maybe have the reruns of the 2004 Bosox season, or maybe their favorite Superbowl ready to go when they first wake up. Anything that brings some smiles and happiness at the beginning of their day or when sun downing starts in. When I do a puzzle with Mom, she is happier at that moment. (sometimes, I can leave and she will do the rest of the puzzle for hours) When these horrible times come up, you have to help them go back to the toddler stages and what you would do during a tantrum in the store, distract....but also you can add.....I am so sad you are getting old and feel so terrible, scared, sad, and depressed. You have been here for me my whole life and now I am more then ready to be here for you. (I know none of us are, but that is what this forum is all about). It is also an activity for me and mom and read out loud things from this site, and she looks at me and sometimes says........"hey, we re not alone." We all know how isolating care giving is and we need to stay on this site, at least, keep venting, keep asking questions, and keep reminding ourselves that NOTHING that is happening with us and our person hasn't happened to someone else. (just like a parent with a child)
Here is my 5 item list that was just horrible for me, but I got so much help from here:
1) Pooping on the way to the toilet trying to get there before everything is on the uncovered chair and carpet were destroyed.
2) Pushing away food that I had spent time on, that eventually went all over the floor and then wouldn't eat for the next two or three days.........sure on my end that she would die. (she did

My husband is still insisting there’s nothing wrong with him except for the normal little memory lapses that come with aging. Some days he talks about not knowing what’s wrong and why he can’t remember things. Some days I lament the fact that he can’t remember things like turning off the hose he left running in the pool and I can’t seem to keep up with all the things I need to follow up on and check on every time i see him doing something like working on the pool or in the yard. We’re still in early stages, but already he does not remember any of the discussions we’ve had with his doctors about the actual visible shrinkage in various parts of his brain and how precisely those areas explain exactly what’s going on with him. He’ll be comforted while they talk, but by the time we’re home he has forgotten and it’s just not the same when I tell him. At one point we took a video of the doctor explaining, and it helped for a few days, but then he decided that was some sort of trick I was playing on him. (The amygdala now gets no support from the temporal lobes, so it sees danger everywhere and can no longer access that “executive function” that could tell him, “no, that’s not a danger; that’s my wife trying to help me”. Knowing it all had a physical and explainable basis has been so very helpful to me in growing my tolerance and patience, though I still have a long way to go. I’m thinking something similar might be true here. She wakes up with the amygdala in full “scan for danger” mode and without access any more to those parts of the brain that would be able to mitigate that. So you’re acting as “substitute temporal lobes”, talking her down in the midst of the terror she can’t escape on her own. Very emotionally draining process, so yes, get some respite and also yes, give yourselves lots of credit for your compassion and patience. This disease is so very cruel. Hang in there!

My Mom's Doctor recommends CBD and we tried it on my 95 year old Mom. It does work at night for good sleep for her.

Bschense,
My husband does this. At first, I didn’t realize it was dementia. Over the last 5 years, he has struggled with rediscovering his illnesses and mourning his former self over and over again. “Help! My legs are paralyzed!” (He hasn’t walked in a year, this muscle weakness is nothing new.) “Call an ambulance, something is wrong!” (This can apply to many ailments, but usually general confusion at this point.)

We have tried three antidepressants that either didn’t work or had side effects. He was diagnosed with panic disorder, and Xanex does help to relax him. Another benzodiazepine, clonazapam, is longer acting and reduces his distress at night, but too much of it through the day and he becomes too tired to participate in activities.

I’m sorry you are going through this. Your mother is lucky to have a caring son. Please also be good to your wife and use respite services to get some time away. I’ve finally started doing this, and I’m grateful for the aides who come in to help.

Oh yes! My boyfriend & I moved in with his 89 yo mother( Alzheimer’s & dementia) & every day she , actually everytime she wakes from a nap, she says “ I didn’t know anyone was here”... we put a wireless bell on her walker & a dry erase board on her dresser so she sees a sign that reads “ you are not alone Ma push call button on walker”- we do hear that doorbell even outside of the house now, but seems to help her anxiety, which in turn helps ours🌞

We are using Seroquel, a medication prescribed by the doctor. 25mg three times a day has proved effective in minimizing periods of inconsolable crying for my 90 year old wife who is being treated for Alzheimer’s. She is also on a low dose of Aricept with no apparent negative effects between the meds

Is she on any meds to help with mood and anxiety? If not, I’d think that’d be the place to start. My dad, same age as your mom, not dealing with dementia, had gotten very depressed about losing his former life and riddled with fear of the future. A low dose of Zoloft has helped

Ditto. Everyday is terrible. Wife of 52 yrs has Lewy body dementia. I am by myself in caregiving. After 6pm is as bad as early morning and recent mini seizures on the potty, limbs go rigid, teeth clenched and then she slumps unconscious for a minute or two. Screaming at intervals at night even as she appears to sleep. Everyday I say I cannot do this anymore.

When my (widowed) maternal grandfather spent a winter with my parents and me, some mornings he would wake up, come downstairs and be agitated. When my mother asked "what's wrong?" he would answer with a sarcastic "WHAT'S WRONG?" and then go into a list of things, most of them either due to delusions or perhaps something he dreamed. Usually he settled down fairly shortly, but he tended to hold onto the delusions.

bschense
welcome to the forum. I think if I were you I’d wake up an hour earlier than mom and have a little quiet time before she gets started. That would be hard to wake up to each morning.
Hard for your mom as well, I’m sure.
Ive heard that sundowning could happen anytime of the day. I’ve never heard of anyone waking with it, if that’s what it is.
Do try to find a geriatric psychiatrist. Hopefully she will move past this stage soon.
Come back often. There is a lot of support on this forum.

Yikes that's sad. My mil just has to relearn everything everyday. Every hour. This is how you turn on the tv. That button turns off your oxygen, it doesn't change the channel. Don't talk to strangers on the phone. I thought it was hard that she still sees herself as a genius and tells everyone she takes care of everything herself and I'm the crazy one. I need something to do now that the kids are gone.

How soon can you ask her new doctor for a referral to a geriatric psychiatrist?
It meant the difference between night and day for our loved one, who presently takes the smallest prescribed doses of two antidepressants, with very good results. Before this treatment, she was tortured by anxiety, and now she is more placid and relaxed, but also enjoys visitors and activities much more.

Our LO has been fairly stable for the last several months, but we have access to a very kind psychiatric PA who is a regular visitor toner MCF.

Your perception of “every day is the first” is also tragically true for us, but now, within the days, breaks of sunshine. Hope you come to experience the same.