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Keeping it brief I hope. 91 yr old mom needs help getting to bed, but when I tuck her in she gets up 3-4 more times for water, a piece of bread, potty, etc. I feel she's afraid to go to sleep because she's afraid of dying alone. We're also dealing with sundowning. I know she's getting closer every day and hospice is coming to evaluate her for care. Hubs and I can't leave her alone and it's putting added stress on us. Should I just suck it up for whatever time she has left or are there things that have helped others that I might try?

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No, this is very very unlikely to be about fear of dying. This is about a confused mind that cannot rest, doesn't know how to shut down for a normal night sleep. Sleep disturbances are very very real.
I would discuss this with your mother's doctors to idea what to try. Some can be helped and some cannot.
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Reply to AlvaDeer
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Don’t worry about addictive medication. That is non issue for people at the end of their lives. Use whatever helps her calm and sleep. Embrace addictive medications.
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Reply to ShirleyDot
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I agree with Alva that this isn't at all about a fear of dying, but is about a woman with a broken brain.
You say that you "feel" she's afraid to go to sleep and to die alone, but perhaps it's you that has that fear and are projecting it on your mom. Just a thought.
If your moms care is getting to be too much for you, your husband and your marriage then you may have to look into placing her in the appropriate facility. Hospice can help you with that if needed.
I would start though with talking to her doctor about prescribing a medication that might help her sleep better.
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Reply to funkygrandma59
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MaribethD Jan 11, 2025
Glad you know so much about my situation.
Not only do I know her brain is broken, I also know that her heart is broken, and her spirit is broken. She has confided repeatedly that she IS afraid to die because she believes my dad is mad at her because she fell asleep and was not with him when he died. She also thinks that her sister and brother will make fun of her because she is still alive and they died before she did. Is it irrational because of her "broken" brain? Yes, I know that very well. Does it make it any easier to see her struggling and want to do anything possible to help her? Facilities that she can afford within an hours drive are full due to staffing issues. Hospice has offered limited help with better hygeine care (two times a week).

Her doctors and I work closely to monitor her mental health and have tried multiple antidepressants, non addictive sleep aids, and anti anxiety meds to no avail.

I wasn't looking for judgement. I was hoping for a bit of encouragement and ideas that maybe someone who has lived this kind of life might have to help. My deepest apologies for not including all of the details of what all has been tried since I was trying to be brief with my question.

Until today, this has been a helpful and encouraging forum.
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I have recently gone through hospice with my mother at end stage dementia and it was the hardest thing I have ever done. My mother had strong faith and only seemed to calm when I prayed with her or sung to her. She spoke to people who were not there all the time - loved ones who had already passed and she was constantly trying to take care of them, she could not rest because she felt she still had a task to complete. We as a family kept reassuring her that she could rest as far as our care here on earth and that it was ok to go to help the rest of the family in heaven. She seemed to hold on even when her body was breaking down. All you can do is be with her and assure her she is safe and get some help for you and your husband. You need the break even if only for a few hours, having some one you trust with her will let her know she will not be alone may help. Please know some one is praying for you and your family.
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Reply to plcmamamemory
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Speak to the hospice
they are trained in this
tell them all you’ve said here
maybe your mother needs calming anxiety tablets
they can support you all well
speak to them
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Reply to Jenny10
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Try to keep her awake during the day so she will be more tired at night. I employed puzzles and picture magazines for her to look at night to keep her occupied. Also, the tv would sometimes put her to sleep. Aside from everything you have mentioned and tried, there may be something that is simple that may work, and that is getting her outside in the sun for 20-30 minutes to reset the melatonin and serotonin levels in the body. Do not cover the head so the sun can get in the body but it is ok to wear sunglasses. If walking is an option, it will also be beneficial. When mine stopped walking, I either pushed her in the wheel chair or parked her on the patio with magazines. The sun also helped with depression. If the weather does not allow, then sit them in a sunny window. Sometimes our doctors forget about these simple things and only know how to prescribe drugs. Stay strong for her during this hard journey. Hope you both get some rest. Sending hugs.
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Santalynn Jan 16, 2025
The outdoor exposure is a great idea. Getting early morning light helps the body set the Circadian Rhythms, sleep/awake cycles, and getting that fresh air energizes the body. Daylight, without glasses/sunglasses/window glass into the eyes affects every organ in the body as well; all this will support her general wellbeing and help her have more ability to relax and sleep well.
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Am I the only one not reading something here? Are we all now so secure in ourselves that we have forgotten the Holy one? Are we now placing our lives in the hands of those who can sew but who cannot heal. I refuse to believe that we are so Godless and will go ahead and say to you to talk with your mother about death being not an end to all things but a beginning for all that was ever meant to be. She is not breathing the breath of death but the breath of life. I pray that you are a God-fearing person and that she will hear and understand all that the Spirit of the living God is telling her through you. If you are not a God-fearing person, tell her anyway because God rains down His goodness upon one and all. My prayers are with you, your mother, and may all the saints of God be praised.
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AlvaDeer Jan 16, 2025
I am an atheist myself.
We have people here who are believers in one god and another and people who don't believe in any god.
A very diverse group, Johna, and welcome.
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If your mom doesn’t qualify for hospice services, please take advantage of palliative care if available. Personally I wouldn’t be at all concerned about addiction to any medications that make her more comfortable or at ease. Palliative/hospice services won’t have that concern either and may know of different medications or combinations that could help. It also sounds like you need some respite, which could be hiring private caregivers to relieve you.
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ElizabethAR37 Jan 12, 2025
As an 88 Y/O (who isn't that worried about death), if I were the OP, I think I would continue to work closely with mom's doctor on finding a combination of medications that could help her. Palliative care/hospice definitely should be able to assist. (The possibility of dependence/addiction probably isn't a thing at this point--or at least it wouldn't be with me.)
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There isn’t always an answer..we are in year 6 of my moms Lewy Body. She wanders, gets up and fidgets.Nothing settles her until she gets tired. We have her on an anti-depression med. Lewy Body does not tolerate many drugs so the “addictive” drugs are not a choice for her. They make it worse not better..Keep talking to her doctor..I am sorry this is your walk…being afraid of dying must be very scary. If she is faithful maybe reading the bible to her would be comforting..ps my Mom is 91 and I know she may live to 100..she is sturdy and mobile! Good luck!
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Reply to Sadinroanokeva
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Maribeth,
I read your expanded response. I can see your frustration. You are looking for a way to calm mom's anxiety.
I don't know why you are avoiding non-addictive sleep aids. At this point in her life, I don't think that is a concern.
For sundowning, and her reluctance to go to sleep, you might try keeping the lights on, not insisting she go to sleep, but let her stay awake, with TV on, until she falls asleep. Yes, you may just have to "suck it up" as you put it, for the time she has left. Can hospice provide an overnight aide to help her in and out of bed?

I too tried multiple anti-anxiety meds for my husband, without much success.
Here's what worked best for him: Trazodone before bedtime has a very calming effect, and is very safe, and non addictive. I have now added a second medication, Depakote. Together, these will put him to sleep in 30 minutes.

I wish you well. Keep in mind, as difficult as it is, this too, shall pass. Go ahead and spend time with your mother, even if it means late nights. Instead of seeing it as a disturbance, look forward to spending quiet nights sitting by her side and talking, sharing memories, reading to her, or watching a movie together.
This will disrupt your usual routine, but only for a limited time. Find time during the day to nap. For a year or two, I slept until 10 am, because I was up most of the night. I was exhausted and it was horrible. The medications helped a lot, and now we are on a good sleep routine.
Consistency in her routine is another tip for dealing with a broken brain. Whatever you do, keep it the same every night. Break her current habit by replacing it with something new. She likely feels compelled to repeat this sequence of events every night.
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