For a hospice patient we were told to use morphine for breathing issues or anxiety as well as pain. Mainly breathing. If she responds well to morphine I would use that and not care what the nurses say.
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@compmom For context, my mother had no cognitive issues, and her situation was unambiguously terminal; she had ended all nutrition and hydration. She claimed not to be in pain but was fretful about her positioning. Turns out the restlessness was a manifestation of pain and Iād been underusing morphine. I remember other meds, but the morphine seemed to address her discomfort most reliably. Her only side effect was sleepiness, but she was lucid when awake; perhaps dosage timing might help you find a sweet spot to balance concerns with your mom?
My mom actually told me when sheād said everything she wanted to say once she finished her goodbyes. She was not ambulatory. All of that made it a more straightforward decision to bump up the morphine. We ended up phasing out the other meds because they didnāt help with her agitation as much.
You mentioned communion ā if your momās Catholic, would a rosary comfort her?
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Thank you@ HouseChatte, that confirms what I have observed. Morphine contributes the most to my motherās well-being. She has been bed-bound for a month now, and eats very little (2-6 bites per meal, often ice cream or broth, not solid).
I like that you attributed restlessness to unacknowledged pain. The most frequent request from my mother is to help her change position. You have given me a new way to look at that.
My mother does have vasuclar dementia and has forgotten where she is, and gets scared. The repetitive obsessive questions (perserveration) mostly concerns where she is and where she is going.
It is not clear how long she can go on like this. She lost 25 lbs in a month. Her anemia will reach a crisis point soon. I donāt see the point in fooling around iwth SRIās that wonāt take full effect for a few weeks, and I read that they interact with Coumadin.
I want to go back to morphine and occasional Haldol. Ativan sedates but erases her so that might help later on.
@compmom, for what itās worth, Iāve found from personal experience as well as that of my psychotherapy clients that Lexapro shows its effects within 2-3 days, rather than a couple of weeks for other SSRIs. Just some info to add to the mix. I so admire and respect how you are managing your motherās needs at this sad time.
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My mom was on lexapro but we didnāt see much impact on sundowning.
I second that restlessness can be a sign of pain and discomfort, especially nearing the end of life. Iām in the camp that comfort should be the priority - physical and emotional.
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@oldmom4896 good to know that Lexapro works faster than I thought. I wonder if it addresses the anxiety typical of dementia, particularly later in the day.
@momofboiler1 did you see any positive effects from the Lexapro? I think your comment on sundowning is exactly what my intuition was telling me. Particularly with the perserveration and the disorientation. Different from the typical anxiety situation. But if there are other benefitsā¦it does interact with some of her meds so there would have to be real benefit. I might check with pharmacist on the Coumadin and diuretic interactions.
I totally agree on comfort. I am going to continue to advocate for morphine for discomfort and Haldol if her repetitive obsessive state needs it. I think I have observed some uptick in her affect when certain people visit and also wonder if playing music would help her.
Thanks all!! This forum has always been the best.
Yes, we did see positive effects from the Lexapro. Definitely helped with overall anxiety. My mom was very medication sensitive and it was one of the few meds that didnāt cause her other side effects.
That said, if you are seeing good results from the Haldol and Morphine, Iād be hesitant to add a medication at this point in life.
Music was extremely helpful for my mom. The hospice music therapist said to try to find music where the tempo matched the heart rhythm. You can see if your hospice has a music therapist that can visit and give song recommendations.
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@compmom Hugs to you.
I too make difficult decisions for my dad and it often makes me feel anxious if Iām doing the right thing or not. My dad has vascular dementia too; he was initially diagnosed in 2016, but advanced rapidly in the last 2 years. Your momās condition is more advanced than my dadās so I donāt know anything about all the medications you listed.
My dad has been on Trazadone for about 2 months now and I have not seen any adverse side effects like dizziness. His neurologist recommended Trazadone early this year because my dad was waking up frequently (3-5 times a night). He said Trazadone is an older medication that was used as an anti depressant but it works really well as a sleep aid for patients with dementia and Alzheimer without side effects.
My mom was against it because she felt he was already on too much medication. I too worried about dizziness since he woke up frequently to urinate. I also thought we had to address his frequent urination issue first; for several years, his PCP said it was just part of aging . It turned out he had a blockage and had to have surgery.
I am glad now that Trazadone is working for him. Whatever you and your momās medical team decide, I wish her peace without any pain. Many hugs to you.
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@compmom- thinking of you and your mother. For what itās worth, when my mother without dementia had terminal cancer and was bedridden, hospice nurses read a ātoo high for circumstancesā heart rate as an indicator of pain. With hospice indicating a focus on comfort measures, I understand why you want to use your observational data.
You are thoughtful and caring in every sense of both words. Hope you can manage to sneak in some rest. All my best.
***Forgot to mention that my mother was on many meds during her hospice care and was highly prone to side effects from individual meds, as well as med interactions. I had a hospice pharmacologist ācalled inā for oversight/input. He spoke with me about the nuances of her med reaction hx, reviewed her chart and tweaked things. As she had a ways to go, it was definitely a worthwhile effort. You may have to ask for it; it wasnāt a routinely offered service. For others, geriatric pharmacology can be a valuable sub-specialty.
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I used Lexapro a few years ago and Iām positive itās what led to my tinnitus, which unfortunately did not go away when I stopped taking it. 
You are all the best!
I was just about to call the wonderful pharmacist who serves this facility. I am starting to think a baseline of Lexapro might help, depending on reaction to Coumadin and Lasix.
That would mean I could still use morphine and haldol if needed I think- but will check that too.
I volunteered on the complementary care team at hospice a few years ago, before caregiving was this intense. But I didnāt think of it until today! Duh! Music and Reiki might be nice.
The pharmacist who serves this facility said (without any prompting from me!) that Ativan, morphine and Haldol are good approaches, and they can be used as needed. She said Lexapro takes 4-6 weeks to work and there is a small concern about bleeding along with Coumadin and in the context of severe anemia/vaginal bleeding/high INR.
My mother was yelping with pain just now so gave morphine and glad to have it.
She is not awake much today but when she is, she has been talking about dying and how she will watch us all from above.
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My SisIL liked morphine administered as drops under the tongue. It can be used to ease pain and breathing. Under the tongue works very quickly and can be carefully titrated.
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I had amazing hospice experiences with my mom & brother. However, not all hospices are equal. The original hospice we engaged for my FIL didnāt properly manage his pain. Any attempts to discuss the situation were met with an attitude that the hospice doctor - who was prescribing based on observations of the hospice nurse, who only stopped by for a few minutes every several days - knew better than the family & AL staff. We made the decision to switch to a different hospice, and it was like night & day. I give my H & his sister credit for recognizing that a change was needed.
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Yes @HImom thanks, doing liquid morphine - under the tongue.
@kelsmom you have articulated exactly the issue that can come up. It is compounded by the fact that many of us are used to managing care, talking to doc and so on. I am trying to figure out when to let go and when to insist!
Yes @HImom thanks, doing liquid morphine - under the tongue.
@kelsmom you have articulated exactly the issue that can come up. It is compounded by the fact that many of us are used to managing care, talking to doc and so on. I am trying to figure out when to let go and when to insist!
Speaking as a pharmacist Dilaudid is a better choice as a pain reliever for women versus using morphine.
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@compmom Sending hugs and strength. You are such a caring, respectful, and loving daughter to your mom (and have been for many years).
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As are you @psychmomma.
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Yes psychmomma, you too and so many on this forum ā¦grateful for all the input!