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I speak calmly to her to remind her each time which is often as several minutes. That she is safe. She is home with her family that loves her. I tell her all the names of her family living in our home. She’s very distressed and confused. Calling out for her father. I am conscious of my tone that I speak to her in, I try lovingly to console her. I put a cool compress on her face her far head to keep her distracted as well as the fan. I have ocean waves playing softly so she is reminded of a more comforting time. Then it happens once again. She rally’s up enough strength to do it over. This has gone on all day today. I called her hospice nurse. Her medications have been increased . But it isn’t helping her. Any suggestions? I would greatly appreciate anything anyone could offer. Blessings 💙

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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.
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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.
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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.
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LNReason Apr 2020
My husband and I watch Reflections, beautiful scenery and music. Often he will go with old hymns. What surprised me the most is that he loved watching preachers and now the message is distressing. He changes like the wind. I did order some DVD's that he is enjoying - but it has to be calming, loving etc.
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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.
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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?
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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.
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I just want to give you a great big warm hug.

I am sorry that your mom is distressed. Such a difficult time.
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GardeniaMomma Apr 2020
Thank you so kindly. Telepathically or Real I will never turn down a hug. Warmest wishes. 💙
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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.
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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.
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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.
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