My mother has repetitive behaviors in final stages of life. After I console her, not moments later she repeats her distress. Is this normal?

Talk again with Hospice, particularly about medication and how long they expect this end stage to last. The simple truth is that you can’t keep this up for more than a couple of days, because you need sleep and it is also very very stressful. If Hospice thinks there is only a day left, go ahead. If they ‘can’t say’ (and no-one can ever be sure), you have to think of a different way to do things. Your reassurance is not solving the problem, because it happens over and over again. Unfortunately it may be doing more for you than for her. There are no magic answers. Can your family members do the same thing in shifts? Or do you need to brace yourself to ignore it? You may find that the distress only lasts about as long as your reassurance sessions. Or will you need to ask hospice to increase the medication so that she is more or less asleep most of the time? This is usually done for pain, but your mother’s distress might also warrant it.

This is a very difficult time. Remember that it is followed by an equally stressful time (though the funeral and travel limitations at present might actually make that simpler). Keep yourself in good shape for what is coming. Have courage!

I just want to give you a great big warm hug.

I am sorry that your mom is distressed. Such a difficult time.

Could it take a little time for the med change to "work"? If it should be quick acting, talk to the nurse again. I'm sure they don't want to do too much too soon but if mom is still fretting at such a high and inconsolable level, it would be nicer for both of you to have it resolved.

Sorry that you're dealing with this. Hopefully she can become more peaceful during her end of life stage.

I would suggest that you try music, specifically any one of the 3 CD's from a program called the Mozart Effect. It can be beneficial to not only your mother, but to you as her caregiver. Also if you can find CD's of the music she used to listen to as a young adult, you can play those for her. Music from people's past often works wonders in calming them down and bring a smile to their faces. A second option is that if you know someone with a video camera, you can record a video of yourself talking to your mother, saying reassuring words and explaining things to her, and then whenever she gets upset, play the tape for her. That way, no matter how many times she gets upset, you can just keep playing the tape for her. It's not an ideal fix, but it might give you a little break. May I say how blessed your mother is to have you. The way you describe the loving way you care for her is heartwarming. Not many people have that kind of patience - me included.

I think you are doing all the right things. I don't suppose any of it is easy and it is hard to witness the distress. The thing is she may not be remembering the previous minutes, which is why she repeats it. An Admiral nurse said that not remembering is a blessing because the distress or pain is not dwelt upon.

Good luck

You are clearly a loving person who is in a difficult situation. Because of the advanced dementia, in the midst of all the other health problems your mother is experiencing, she is not going to be able to remember what you say to her or do for her for more than a few minutes. Those with dementia live in their own world, as I know with my loving wife who is nine years into Alzheimer's. If she can respond to simple questions, perhaps with answers that require only "yes" or "no" or "I don't know" you might be able to enter her world sufficiently to try to understand why she is so frightened.

It would be good to search for clues as to what is the cause of the anxiety. I'm not sure if you should ask her specific questions about her feelings, or whether she could respond to them. However, sometimes it works to ask her questions that require one or a few words of answer. I would begin by asking her if she is frightened by whatever you think the cause of the anxiety might be, perhaps:
1. Are you afraid of dying?
2. Are you in pain? Does something hurt?
3. Are you afraid of leaving x?

If there are specific activities she likes (music is a good suggestion above) you could embrace these activities. Alternatively, if she can still communicate with you or her husband, one of you could ask:
Would you like to . . . listen to music . . . have a nap ... have a drink ... eat something, etc.?

If she has stopped eating and drinking, she is not going to live very long. But this is not as painful a way of facing death as might appear. In fact, the medical advice is that the person feels very little pain.

You do have to look after yourself. Your father might, hopefully, do more than simply sit and cry. That in itself is going to cause anxiety, because if people with advanced dementia see how anxious those around them are, they will then become anxious. Even if she is anxious, but you and others respond with smiles (especially on entering the room) that can be quite helpful. If your father simply wishes to cry, I would try to keep him away from your mother, or perhaps set a firm rule: If you wish to see you wife, don't cry. Perhaps his anticipatory grief is quite appropriate for him, but it is certainly detrimental for your's mother's situation.

I hope these reflections are of some help.

With love and prayers


You have some good suggestions above, especially about making a DVD recording for her in which you respond to her anxiety, so that you or she can play it whenever is appropriate.

You are doing all the right things. She is reliving some terrifying experience. Maybe an antianxiety agent could help calm her down, but it wouldn't stop her reliving the experience. Songs that she knew as a younger woman may also be able to divert her attention.

As a Christian, I would also suggest playing old hymns that she may know. Praying aloud with her may help her to redirect her focus. Playing recordings of people reading the Bible may also be comforting.

Praying for her and you.

A few thoughts and I may be waaaay off base.
I recall when my Husband was in late stages he always seemed cold. Is the fan making mom feel cold? Is the cool compress making her feel cold as well?
Personally I HATE fans blowing on me. In a store I will walk 3 aisles away to avoid the one with the fans.
Try changing the sound on the sound machine. I have one that will do the ocean waves but it does others as well. I like the one that has summer night sounds, crickets and frogs. Maybe she wants to hear a variety of sounds. (Personally I can't listen to the river one it makes me have to go potty ) I also like the one with the thunder storm although it scared my cat!
You are doing anything and everything to help her.
Other than asking about anti-anxiety medications but I am sure Hospice has considered that if she is not one one.

Hello, sorry to hear things are difficult right now. I have been caring for my mother many years who has dementia as well. She is all about repetitive talking. Thinks she is constantly falling for just one example...sounds like you are doing the right things. She also calls for her mother, father, brother, etc all of whom have passed on. She does not remember they are no longer living so she gets upset when she "finds" out they are gone. Here are some tips her psychiatrist has told me as well as her psychologist & others... Talk to her in a calm but reassuring manner( like you have been doing)...when she asks for someone deceased do not lie to her...tell her the truth that they have passed on. She probably will not remember very long but at least she won't think they are avoiding her. She may temporarily relive the grief but it will pass pretty quickly. Go sit with her and hold her hand, kiss her forehead, etc...make her feel secure & loved. Talk to her about a good memory maybe both of you shared together. This kind of strategy will go a long way in helping keep her calm. However there will be times when none of this will help? All you can do is continue to talk calmly to her and keep her safe. I don't know you if are dealing with sundowning or not but my mother sundowns badly...this is usually the most difficult period of the day and sometimes she is so irrational & confused there is little I can do to console her. I like the music ideas and they probably work with many people but they just created more agitation for my mom. If they work for your loved one then thats great. Be careful if they are a TV watcher...make sure there not watching horror or gore kinds of shows even by accident...it scares them badly especially if they are already confused. Then you will be up extended periods of times trying to reassure them the "monster" is not going to get them or that some one is going to hurt them. Sometimes they will put themselves "in to" the show and start talking to the TV...then get upset when they don't answer back. My mom does it with the Andy Griffith show alot...she gets mad when Andy & Barney won't talk back. If you change the channel for just a little while to something generic like the news or weather channel they might momentarily get upset but they will forget about the TV show and stop shouting at the TV. Make sure the programming they watch is calm and non threatening( like I avoid cop shows...too much shooting, chasing, fighting, etc.) Use any medications her doctors may prescribe to calm her or help her sleep. You need this "down time" for yourself to rest & recharge for the next go around. Its just as important for her to have a day & night as you do. This is very important...if you do not have her in a set routine get her in one as soon as possible. A daily routine will organize both your days, decrease confusion & agitation, and perhaps save some time too. If you are able take her outside for at least 15 minutes everyday. My mom's doctors say it is mood lifting to go outside daily(weather permitting). If you do this you might she a change in her thats positive. I hope at least some of this was helpful and I wish you good luck. If she does not have a mental health professional involved in her care, please consider it. It helped me & my mother tremendously...there is no "stigma" etc. with seeing a mental health professional they help many people with these types of issues & if medications are indicated they will insure they are on the safe and appropriate meds.

Watch Naomi Feil on YouTube about communicating with dementia

I’m sorry for your situation, dying is tough on everyone. Is your mother religious? If so, consider having a pastor, priest, chaplain, or rabbi give her a final blessing. My mother had asked us for one so we did it when things were irreversible and hopeless. I cannot tell you the immediate peace and calmness that she felt and exuded. It was so beautiful, words can’t explain what we witnessed. This was our situation, perhaps it could be yours too?

Hospice can give her more medication at this point to keep her from feeling any anxiety at ALL. If she's continuing on with the same repetitious/anxious thoughts & behavior patterns, she needs more medication. Watching instructional videos at this stage of the game serves no useful purpose. Telling your mother that ANY of her family members have died is not 'lying' or helping her......it's causing her even MORE anxiety by having her relive the trauma each & every time she's forced to 'remember' it. The very best thing you can do for her right now is to simply keep her comfortable AND relaxed, whatever it takes. And hospice is very good at doing that very thing. They also provide counseling and chaplain services for you and the rest of your family in an effort to help you cope with the upcoming loss.

When my father was dying of a brain tumor and became agitated, hospice was there to keep him relaxed and to stop him from feeling any angst at all. For that my mother & I will be forever grateful. End of life needs to be as easy as possible, so the transition is smooth and seamless.

Sending you a big hug and a prayer for peace.

When she calls for her father, you might tell her, "Your father has gone on ahead and is getting things ready for you.". You don't need to explain that he has died.
The idea that he is somewhere preparing for her might be comforting.

Some people find their loved ones with repetitive harmful behaviors are helped and distracted by fidget quilts. (Sometimes called fidget blankets.) You can find them on Amazon and Etsy.com

Here is something that came to mind. Sometimes giving them a doll to hold helps calm them. Explaining to her about her father.... better to just distract her like with the doll and not get into trying to explain about her father. This IS normal much of the time. I have had some see people.... they really think they are seeing a loved one. Do NOT tell them they don't. This causes more agitation when you disagree with them. I take care of the elderly and have for 30+ years. When they do this, no trying to get them to understand... to reason with them. Distraction...some like me playing the piano... or singing. One woman. I did NOT know this until... she and a bunch of the elderly (in a facility) were sitting around a table waiting for lunch to be served... and what to do? I started singing a hymn and.... this woman joined in. Knew every word... every note. The staff were in shock. She had never done this before. Found out... she had been a music teacher. Hearing these hymns had "unlocked" something in her brain... again.... she knew every word... and every note of the hymns I was singing. And boy... did she sing with gusto !!! Beautiful.

Oh, this is a hard stage. Sending you hugs, as my stepdad had some of this (and I sometimes felt so helpless to comfort him). Hospice can really be your ally, as they will be honest about what stage she is probably in, and may have coping strategies. It may be that she has something she desperately needs to say, and is having trouble organizing her thoughts long enough to do so. A hospice chaplain
might be able to help her with that. Just a thought.

Dear Gardenia, my heart goes out to you. My mom died in September. She was agitated and asked me about people who weren't there any more, like her mother, and my brother, both of whom died 20 years ago. I finally said, "They're together, and they're happy. They will be with you." She stared at me for a moment and then nodded, and rested comfortably. I read the book "Final Gifts," written by hospice nurses who've been doing this work for years. (It's incredibly helpful, I recommend it.) They talk about moments like this, when people keep repeating questions, or wanting to speak to someone who's gone, they're often trying to resolve some issues. So maybe ask your mom what she wants to say to her father, and tell her that he's not there now but that you can pass the message to him. That may help her find some closure.
All the best to you, and to everyone here.

This is a difficult time. Prayers sent to you.

Oh sweet Gardenia
these are signs of transition. I was with my mom when she passed and she did everything you said. My mom went within hours of starting the repetitives but transition could take days. My mom also gently pushed my hand off of her arm, same to my sister. Don’t cry, keep her calm and she is probably thirsty. Get some sponge sticks, wet with water and ask her to suck. Easier for her and she won’t choke trying to drink.
with love and light
sabrina