Hospice and new strategies

persevere · November 2

Good morning. Some off you know me. Briefly DW diagnosed in 2019. Clearly in later stages. I tend not to use the stage number because it gets confusing but she's clearly in stage 6 area. Non verbal except jabbers all the time in a sort of distressed manner. I think it would be classified as global aphasia. Not totally incontinent but I take her to the bathroom a lot. Still very ambulatory. We started on Hospice a week ago. I think it's a good thing. I'm not sure I'm trying to solve any more problems other than make sure she's comfortable and not in any distress. I read and am told (by hospice) she's not necessarily in distress when she's jabbering although it may appear that way. So current strategy is as follows: got rid of all meds (cholesterol, blood pressure, lexapro). She's been on some of these for years and they may be counterproductive. Currently going with 25mg serequol morning and night and 30 mg temazepam at night. Also acid reflux med and magnesium (I think it helps with bowl movements) stay on the table. Serequol usually just puts her to sleep for an hour or so. The rest of the day is spent just trying to entertain, keep her calm, and maintain sanity. I don't think the serequol really makes her calm for any extended period of time. Just wanted to see what kind of feedback I get on this. Are there other meds that have a calming effect without heavy sedation? My guess is no. I think also she is already perhaps building up a resistance to the temazepam. Nights are always the hardest as I'm sure most of you can attest.

jgreen · November 2

Hi Persevere,

I like the name - fitting for you!

My DH not where yours is. I am not looking forward to this next step. He does wake at night, or often talks in his sleep. So meds not an issue for me/him at this point. What helps me on those nights where I don’t get much good sleep/rest is our son sits with his dad for a few hours during the day so I can rest and re-charge. Hospice may have some ideas or options that might help. And it sounds like you already have a good relationship started with them.

Hugs and prayers.

Kat63 · November 2

My DH is home with me and been on Hospice for 15 months. He is on Seroquel, and has been for over a year. It takes a few weeks to see the full effect from the medication and you may have to gradually increase the amount to find what really works. Just keep working with your Hospice nurse. They have access to so many medications and I’m sure can help you find what will work best.

Bridge4 · 8:22AM

Trazadone helps my wife reliably go back to sleep for 4+ hours when she wakes up in the middle of the night.

harshedbuzz · 12:12PM

@persevere

Managing medications is something of a dark art made all the more challenging when our LO is unable to participate in the discussion.

A couple of thoughts. While it is typical to discontinue preventative medications like BP and statins in hospice, psychoactive medications like Lexapro are often continued. We stopped BP, statins and metformin in stage 6 "palliative approach" care. His BP and A1C were improved with dementia-related weight loss so it made sense to reduce his fall risk from LBP and GI issues from the metformin. The statins did have the side effect of mild muscle pain changing the risk/benefit ratio in the context of a progressive terminal illness. We did continue the SSRI, in his case Prozac. TBH, I wasn't entirely sure it was doing much for him, but he was inadvertently not given it on discharge from rehab which proved that he was.

Specific to the Lexapro, another SSRI, did they do a slow taper of the medication? Abrupt discontinuation of Lexapro can be quite unpleasant. There can be emotional lability, flu-like symptoms, cognitive issues, and brain zaps for a time. These symptoms can last a few weeks if she'd taken the medication for a long time.

Tamazepam is a benzo. It is not really intended for long-term use. People using it longer than a week or so will start to build a tolerance to it and require a higher dose to achieve the same therapeutic effects as when it was initially taken.

You don't mention how long your DW has been taking Seroquel, but we noticed dad became sleepy on it when he initially started it. This side effect lessened over a week or two as his body got used to it. Dad took 25 mg upon waking and then after dinner. That's a low dose; there is room go up if the PWD needs a higher dose or an additional one to maintain calm.

HB

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