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She's on Xanax & Seroquel since mid-Sep. It's a daily event now and I feel like I'm losing my mind. She's flashing back to two different houses from her childhood, (also located in S. Philly) and wants to go NOW! I had to physically stop her Saturday because it was too late to go out. I have taken her out as a last resort but don't like doing it. Have tried calling siblings to interrupt the behavior but that isn't always an option.On Xanax & Seroquel since mid-Sep Many thanks for your help! Donna

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Hi Donna - Try talking to her about the places, what she remembers about them (having hot chocolate as a child, a cup of tea as a young woman), reading a book curled up in an easy chair (or something else you could replicate. Did it smell like a special fragrance, would a photo of someone who lived there with her help? Maybe by making some other positive associations she would relax and have her need to go 'home' satisfied.
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Thanks, Kathleen . . . I will try those cues you mentioned. I showed her a pic of her mom because sometimes she says 'they' are waiting for her. Problem is, a lot of what my mom is saying is gibberish, so I can't make sense of most of it. It's heartbreaking.
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It is heartbreaking. Maybe she would take a hug from one of them, 'via' you. That way you get to share some affection. Ask what 'they' will do when she gets there, and talk about that. Use Improv. Get into her world. It can be silly, but also can be very effective. My husband told me there was a monkey outside in the backyard. Instead of telling him there aren't monkeys in the wild in New England, I told him he should go right out and check. He went right out and took a look. It was a bunch of leaves in a tree. He came back to tell me it wasn't a monkey after all. Thank goodness! Hang in there donnajeane.
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I haven't been impressed with Xanax for dementia patients. I've never heard from anyone who had a good result.

I'm not familiar with Seroquel, but hear good things. What I can suggest is that you ask her doctor about Cymbalta. It's for anxiety and depression. It worked miracles for my cousin who has severe dementia. She doesn't focus on the home issue.

How well can your mom focus? If she can focus on something, I might get her a stack of things to work on. Like a big stack of photos. Ask her to pick out all her favorite photos. Have a stack of at least 100. It should take at least 10 minutes. After she completes it. Start over, since she may not recall she just did it. This might keep her occupied for a little while.

What if you kept her busy getting ready to go out. Brushing hair, brushing teeth, applying lotion, etc. Maybe she will stop obsessing after awhile.

What if you suggest you make ice cream sundaes? Would they distract her for awhile.

The thing is that the distractions may only work a little. I would seek a more substantial way to quiet her anxiety and delusions with medication.
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Is it a daily event at a certain time of day? It may be what the call "sundowning " although it can happen at any time of the day or night.

Have you spoken to the doctor who is managing her meds about the fact that she is exhibiting regular bouts of agitation despite the drugs she's on? Her medication regimen almost certainly needs needs adjusting. Whether it's new meds or different dosages or timing the dosages differently, it's been my experience that meds CAN make a difference.
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Sunnygirl, thanks for your comments. The doc said he's had success with Seroquel, although it takes awhile to kick in. Xanax is given every 8 hrs as needed for agitation, then discontinued. However, the first time i gave it to my mom, she was out. So, i cut the pills in half and am trying to find the right amt (if it exists) so that she's calmer, but not zonked.

Her focus is poor, as are her language skills; however, I'm willing to try any and all suggestions to see how she receives them.

I will definitely ask the doc about Cymbalta if this protocol doesn't improve. I know it is trial and error with most meds - especially with dementia patients.

Thanks again. Donna
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I'm no expert, but I know what Cymbalta did for my loved one. It was recommended to me by others who did not have dementia. It doesn't have the sedative affect of some meds. It really doesn't seem to cause any sedation at all. It works by addressing the chemicals in the brain. It's for anxiety disorder and depression. It gives the patient a sense of well being so they are not worried, anxious or sad. For some patients it is very helpful.
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Hi, Babalou . . . thanks for your post & yes I believe it is Sundowner's. When it became more severe, I called the doc so he could prescribe something; that's when the Seroquel and Xanax started. I just don't know how long to wait to see if it's going to work.

She gets so mad, upset, agitated, and does not want to hear "no" for an answer. We live in a rowhouse in the city; I don't want to go outside when the weather gets cold.

This past Saturday, I had to take her out because she was really bad. She wanted to go up the steps of the house where she used to live with her parents in 1953; however, I didn't think the man who rents the house now would appreciate us popping in.
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Sunnygirl, I do like the part that the Cymbalta is not a sedative. I don't want my mother to be a zombie. I will definitely talk to her neurologist about it. Thanks for your input . . . Donna
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Seroquel should be at it's "steady state" in two days. It's not like the SSRI or
SSNI antidepressants which take several weeks to kick in.

Seroquel (which is an antipsychotic) did nothing for my mom's sundowning. Eventually, the geriatric psych came to a combo of Remeron, Lexapro and a tiny dose of klonopin. Medicating agitation in dementia patients is very much trial and error, as you say. Don't give up!
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Wow, two days? This is more like three weeks. I think I will call him tomorrow.

When I originally called with the change in my mom's symptoms, he wanted to 'see her in a couple of weeks." I said, this is serious; something needs to be done sooner. We got an appt. that afternoon.
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"Oh Mom, I don't blame you for wanting to go to Elm street. That is a very happy location. But I can't take you today, I'm sorry. I have to wait for an important phone call. Let me make a fresh pot of coffee and take some cookies out of the freezer, and we can sit and talk on the porch for a while."

"The Rock Street House is something special, isn't it? Did you know the roads are all torn up on that side of town while they are putting in new sewers? I don't think we could get very close now. They'll be done in about a week, I think. Would you like to take a little drive over to the park instead, this afternoon? I can pack us a little snack to eat there."

Acknowledge that you know she wants to go there, "explain" why you can't right now, distract with some other activity.

If she has only been on the new drugs two or three weeks, that may not be long enough for them to reach a therapeutic level. It may be too soon to think about adjustments, but do discuss this with the prescribing doctor.

I am curious. When you do take her out, what do you do? Drive past those houses? What is her reaction? Does that calm her?

My heart goes out to you. I remember lots of "I want to go home" episodes when I felt so helpless.
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Hi, Jeanne, thanks for your note.

Well, we live in South Philly - right down the street from where my grandmother moved to when my mother was a teenager. Some days she recognizes it and wants to go to see her parents and gets quite agitated when I stop her from going up the steps. Other days we can walk right by it -- even though she insisted on going there.

Another house is a few blocks away, the house she was born in, but hasn't lived in since she was 16.. She just recently brought it up. I don't walk or drive by that street and don't want to start doing that.

I take my mom out with me every day to run errands: post office, CVS, grocery, bank, etc. When she starts with the "going home" process - usually in the afternoon - I say everything I can to dissuade her before agreeing. If she starts freaking, I take her with the rollator, weather permitting, to walk up our street.

She gets extremely upset when I try to give reasons why we have to wait to go. Today she started moaning like a wounded child. I hugged her and got her to settle down, but I cannot go on like this day after day. That's why I came here for some fresh ideas, cause I'm mentally exhausted.

Thanks for your support . . . it's so very helpful and much apprecuated.

Donna
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Edna started wanting to go home, that Daddy was waiting for her. For a while, I endured telling her, again and again, that Daddy had died. It was upsetting for both of us. Finally, I started suggesting she look around the room and give me the names of things. For her, sometimes it means that she really wants to go to bed or the bathroom. Different stages of dementia, I imagine. When she really gets on a roll about Daddy, I give her a hand held mirror and ask who's in the mirror. After a few moments of lack of recognition, it finally sinks in and she laughs when I ask how old she is. That's usually enough of a distraction. On really bad nights, I can give her a tylenol PM and she gets sleepy enough that she forgets.

She's been on Celexa (Citalopram) for about 10 years. Our visiting doctors wanted to take her off it, because of her age and we all went, "are you KIDDING??" She's happy, she's 92, and if it means her liver or kidneys suffer, we'll work on THAT.

LadeeC
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Seroquel and xanax worked well for my mom. What time of day do you give the seroquel? I gave 12.5 mg each day about 4:30. If it was a difficult night where she just could not stay in bed i would give her 2.5 mg xanax. Rarely needed the xanax which became more frequent about two months before the move to memory care

Finding the right combo for those with dementia is very difficult and unpredictable. If she gets out of hand you can take her to ER, then request a three day psychiatric evaluation where they will figure out thw drug cocktail she ahould take.
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"Old age home? Old age parents?" Wow ritkasharma, you couldn't even sell me a free house by the sea.
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Sorry about my comment there DonnaJeane. I was a bit... astounded.
When my grandma wanted to go home time and again, I finally found after trial and error to quickly move the conversation to another aspect. Example,
Gram: "I want to go home!"
Me: (in a cheery but calm voice) "oh I know you do grandma, what was it like when you lived there?"
I'd go on and on with things like, "What color were the walls?" "Oh you had wallpaper?? Wow, what did it look like?" etc until she settled into a memory she wanted to discuss. It didn't always work but many, many glorious times it did. Most important was to maintain empathy and not cave into sympathy. When I let my heart and emotions go to mush with hers it was much worse, as if our different sadnesses together created a tragedy. God Bless you, hang in there. Amy
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You don't need to take her anywhere.

When my mom did this, and got SUPER agitated about it, I told her she had to have the doctor's permission to go, and we didn't have it today. We'd have to ask tomorrow. (wink wink). No matter how many times I said this, it was as if I just said it the first time.

My mom wanted to go to her childhood home (demolished), the house she lived in as a new bride (demolished), the house I grew up in (sold). All of these properties are 1800 miles away, not exactly across town! She wanted to see her grandmother who has been dead for decades.

Going "home" is not literal. It's a strong desire to return to a time when things were good. The trip and the realization that nothing there is as it used to be can be awfully traumatic and serve no real purpose. We don't need to validate reality when the reality is that all the things in memory are no longer there.
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Babalou is right. The meds that work for some don't work for others. We are lucky that the Cymbalta really worked so well and quicker than expected.
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Sandwich24, excellent!
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A big THANK YOU to everyone who took time to post. I truly appreciate your support and caring!

Gladimhere, you asked about the Seroquel dose -- it was prescribed mid-afternoon and bedtime (.25 mg). I have been giving it around 3pm since that seems to be the Sundowner's appearance time. I also gave my mom her .5, of xanax @1pm today to see if that lessens the agitation.

Hi, sandwich42 . . . I have pulled out "the doctor said . . . " quite a few times with mixed results. Sometimes she gets to punching the chair arm (once while on the ph0ne with my sister who was trying to tell her to stay inside with me), whereupon I've caved and took her out for a quick walk. If it's nice out and daytime, OK, but that's not always the case.

Hi, LadeeC . . . I, too, have to stop trying to convince mom that her parents are gone. There's a part of my brain which keeps fighting to remain 'logical,' since I've been that way from a very young age. It's not serving me in this situation, that's for darn sure!

Hi! Amy . . . Thanks for posting. Just loved, "maintain empthy; don't cave into sympathy." Truly enlightening! Blessings to you and yours!

I do need to have some snappy combacks memorized for when Sundowner's hits, and I've made notes from all of your messages about projects to distract my mom. Will be asking the doc about the current medicine protocol.

Again, everyone, you have helped me more than you'll ever know. Blessings & hugs to all! Donna
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Dad goes on these verbal rampages demanding to be taken to his old job sites from years past, calling contractors to drive him when I refuse. He forgot he is retired and 90 and frail. He doesn't just want to drive by. He wants to bring his measuring tape and risk falling and breathing in dust. I tried avoiding him for the last 3 days, focusing more on moms needs. Sis just told me dad called her and asked her if we are mad at him. Maybe the silent treatment worked.
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This is all trial & error. You have to more or less guess at what will be the calming answer on a day by day basis. When you think you found gold, everything changes and you're back to square one.

Mom would get all kinds of riled up and threaten to call a cab and have it take her to the airport. She was going to call the newspaper and governor because we won't let her go home. And on in that vein. It was very theatrical.

If I couldn't distract/derail her, I started treating it like a temper tantrum and giving it no response whatsoever. "If you're going to act like this, I'm going home. This is not fun for me to be around you like this."

Or, "I have upset you and I am very sorry. I'll come back another time when you feel better."

"You seem upset. I'm sorry mom." And just leave it at that.

Remember, you are now in charge. I had to learn a whole new way to interacting with mom, which was hard to do. I had to learn a whole new way of communicating with her too. There are no classes for this unfortunately.
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Wow Sandwich, You really figured it out. Thank you for these great tips.
A big part of it is not getting drawn in to the dementia drama. Dad calls cabs, too.
I send them away or if I'm not there I told the CNA to give the cab driver some money and send them away. I like your "I'm sorry your upset. I'll come back" strategy. I will use that!
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Something else that helped me donnajeane... when you know "it" is coming, when the sundown struggle is drawing close, prepare yourself like a champion, find space for a few minutes or tune out for a bit if you can't get away and mentally prepare for the "fight."
You tell yourself things like, "It's inevitable, its coming and I can do this, I'm going to be calm and matter of fact, this will be over in an hour, I can take it, my approach will be clinical and practical, I'll be creative and supportive without giving in"
because the truth is, much like sandwich said, you can't give her what isn't in your power to give her, you can't give her what is no longer there.
Creative distraction is key. My dad has to have something to obsess over as part of his disease. Ok, so I want to help him create the next obsession by tailoring it as much as I can so that its manageable. Example; dads obsessions intensified around 4:45 pm and became terribly difficult to deal with. He obsessed over the temperature of the house and the wind direction outside and he HAD to change the filter in the furnace every day. There was just a multitude of household appliance problems he imagined he had to fix immediately. He would get so upset trying to deal with it all that he would cry. It was heartbreaking. My sister, in the meantime decided dad needed to change his diet (I was like, change? what?! are you kidding me? lol) and she painstakingly incorporated extreme dietary changes and explained to him over and over what the benefits were and how the things he normally ate would change. My dad hates change and it was hard but once she got him going it replaced that awful, impossible daily obsession for this new one. No more pacing, taking things apart, and best of all he didn't break down and cry from frustration. We wrote out the info/answers to the diet questions he asked us a trillion times in a notebook and everyday at about 4:45 it was study time for him. He poured through the notebook and talked about his diet, weight and the changes he made. He was proud of himself and I made sure he knew that we were proud of him. Other obsession come and go and new ones flitter in and out, some are ok and some not. It's still tough but not nearly as dark as his impossible handyman career.
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I have to say that I got a little kick out of sandwiches mom threatening to call the governor and the newspapers and yoga girl's dad and the cabs. I needed a giggle.
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Thank you Amy. Laughter is the best medicine! Which reminds me, a great distraction is some nutty, funny, story. Example: I tell them that the spider next to their front door gave me a dirty look when I arrived. They laugh and I can use it over and over because they can't remember.
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Hahaaa that's awesome yogagirl. My dad (pre-dementia) was the wittiest man I've ever known and I mean that seriously. He had a natural gift of humor and could make people laugh at the most mundane things. Recently, I was taking him to a doctors appointment and there was a dead skunk in the road, it was messy to say the least so I said, "Oh dear" as I careened the car around it and for a split second my dad was himself again and he said, "No Amy that's not a deer, that's a skunk." :-)
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A couple of my other favorite distraction techniques:

"Let's wait until after we finish the laundry [statement, not question - important distinction. Giving choices isn't always the most useful option] Would you mind helping? I've got all these washclothes I need folded." (And if I don't have any fresh from the laundry - a rarity, actually - I've been known to grab a stack of them and UNfold them, just to give her something to do.)

She loves brushing my hair. "Be right back .. need to finish the dishes and when I'm done, I'd love for you to brush my hair." (be right back - a delay tactic that often helps disperse the anxiety, and brushing hair is really relaxing - for both of us). And then I make sure to *immediately* suggest bedtime (or other activity, depending on the time of day), "It's bedtime, let's go brush our teeth and stuff."

As caregivers we end up having to be realllllly creative with solutions. Good luck with finding your own!!

LadeeC
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LadeeC that's great advice, "lets finish the laundry first" and unfolding wash clothes. My grandmother needed that kind of diversion. She was a clean freak all her life and in her dementia she would spot a piece of thread on the floor and go through extreme effort to pick it up and she didn't want anyone to help. :-) I think the laundry idea is fabulous for the ladies. I found an analog clock that doesn't keep time very well and since one of my dads obsessions is clock accuracy he fiddles with it and has taken it apart and put it back together several times. Some days he heads straight for the clock as soon as he wakes up. Things like that would suit the gentleman.
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