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Background -- Mom has vascular dementia, was in the hospital in December with an infection. She also stopped eating at that time and has existed mostly on Ensure since then. I had her put on hospice care when she returned to her memory care facility, and she came down with Covid a couple of weeks later. Covid was a breeze, but now she has unexplained bruising breaking out all over her, including an enormous blood blister that came up overnight a few weeks ago. The hospice nurse has seen this in three post-Covid patients, so she thinks it's related. She's lost at least 40 pounds since December.


Mom's dementia took a pretty deep dive as a result of her hospital stay, and now she mostly talks in fragments of sentences kind of like when you talk in your sleep. She's not terribly awake most of the time either. I was able to visit her in person last Friday for the first time in a year, and she no longer knows me. :-(


Fast forward to yesterday -- The hospice nurse said that Mom is starting to get aggressive. She pulled the nurse's hair on Friday, and hit one of the caregivers in the stomach. She has also scratched herself and torn her paper-thin skin in two places. Mind you, my mother couldn't snap a twig if she wanted to -- she's that weak -- although she did hold my hand tight when I saw her. The doctor wants to put her on Seroquel because they're concerned she'll hurt herself swinging at others, not that she'll hurt anyone else. From what I've now read on this drug, it supposedly isn't terribly effective with dementia patients, and it can cause strokes. As my mother is already bleeding like a sieve, it seems like a poor choice of medication. She doesn't suffer from sundowning -- The nurse says she just wants people to stop poking and prodding her, which I completely understand.


Has anyone else had recent experience with this medication? What is your opinion of it? I'm concerned it's going to zonk her out to the extent that she'll consume even less nutrition than she already does. Normally I'm in full agreement with what the hospice nurse suggests, but this seems to be a bit of overkill for what actually ails her.

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With hospice you need to think of rule of comfort rather than rule of rescue. Without being proactive in keeping her comfortable, you may prolong suffering. The seroquel recommendation may be under the hospice best practices regimine
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Reply to MACinCT
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My mom also is in MC and is on Hospice. The staff said she was getting nasty with the staff. She told one of them she was going to hit them with a broomstick. She was trying to exit. They called me and they asked me if they could have hospice put her on a low dose of seroquel. I approved even though I too had reservations as I knew it was an anti psychotic med. But I also knew that Many patients with dementia have been helped with it. They tell me she is much calmer now.
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Reply to evander09
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My husband took Seroquel more than 9 years. I gave him his dose only in the bedroom, and it totally zonked him out. If he woke up a few hours later to go to the bathroom he was back to his normal self. (My husband had Lewy Body, not vascular dementia.)

Your Mom is on Hospice. She is going to die soon. There is no chance of her recovery. Which decision will keep her more comfortable? Which decision would make you more comfortable? Might she more lucid with or without the drug? What does the doctor think?

Could she try it for 3 weeks?
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Reply to jeannegibbs
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You’re welcome, MJ.

Wishing the best for your mom.
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Reply to NeedHelpWithMom
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Just to be clear, I have seen my mom frequently throughout this time, just through a window rather than face-to-face. I was well aware of how thin she'd gotten, but when you're right next to her, it's more obvious.

Her MC has an outstanding staff of caregivers, and I have no complaints whatsoever about how she's been treated. They do talk to her, but she's virtually deaf and won't let them put in her hearing aids anymore, plus she's almost blind. Combine all that with her dementia and no sense of time or place, and she no doubt feels like the person coming in to dress her wound or change her diaper was JUST there bugging her when all she wanted to do was take a nap. In reality, it could have been two people two hours apart.

Her hospice nurse is also excellent. She knows I have a strong stomach and sends me gruesome photos of Mom's wound so I can see whether it's improving or not, and sometimes we discuss Mom's situation in hour-long phone calls. She wonderful. This medication was the only thing that really gave me pause, mostly because the behavior I've seen through the window doesn't approach what I'd call aggressive. However, the hospice nurse has assured me that it's escalating, and she's seen it many times, as have I in other residents back when I could visit. This isn't my first rodeo with hospice, but it's been a very different experience than it was with my dad.

We're going to try the medication and keep an eye on how it affects her. Thanks for all the opinions.
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Reply to MJ1929
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My mom was on 25mg seroquel, then 50mg. I've never noticed her being calmer as a result. It might not be too strong for some people. She weighs 130lbs.
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Reply to Otherwise
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Your mom's history sounds so similar to my dad. He too lost tons of weight, drank mostly Ensure and became aggressive with the staff...hurting one of them. They finally found that Tegretol worked to diminish this as well as the occasional Xanax as needed. many dementia patients get aggressive so it’s not unusual. One thing however is we found out the staff was part of the problem and didn’t have proper training ing in how to handle or approach dementia residents. We put the di toe of nursing on to Teepa Snow videos to use as in service with the staff. She was most appreciative.
with her on hospice, the point is to make her life less painful and that includes mental anguish. I would find a medication that helps.
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Reply to Harpcat
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I looked up Seroquel from my nursing resources. It has been used to treat dementia patients successfully. Side effect is increased appetite - which would be beneficial in her case. Of course, it can cause drowsiness. If she is started on a low dose at first she should have less trouble.
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Reply to Taarna
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If she is on Hospice, I would allow it. She is suppose to be kept comfortable.
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Reply to JoAnn29
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Harpcat Mar 31, 2021
Agree
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Granny,

It’s not like that at all. My mom is on meds and she is completely lucid.

She is talking with me and she just FaceTimed with my cousin in D.C.
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Reply to NeedHelpWithMom
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Guess I'm an oddball, but if I ever get dementia, I hope they drug me into a stupor. I can't imagine how terrifying it must be to not recognize anyone or remember anything.
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Reply to OkieGranny
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If you hadn’t seen your mother for a year until last week, you were almost certainly shocked by how much her condition has deteriorated. I’d certainly check her fingernails to see if they are part of the scratching and bleeding problem, but my experience is that some old skin can react if someone breathes on it (or almost).

It’s true that drugs are used for many different purposes, not just what you expect. I was given a one-sixth dose of a psychiatric drug, for pain by the Hospital pain clinic, not for any psychiatric reason. I then found that because of it I could no longer get income maintenance insurance (which I never needed, so at least I saved the premium)! But it can’t do any harm to check with the doctor, not just the staff, and to ask whatever questions you want to.

While you do that, you can get a little more used to how your mother is now, and how close to the end she is. This must be very very difficult for you now. We have all known how difficult the lack of visits has been, but haven’t always understood the shock when it finishes. You have all our sympathy.
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Reply to MargaretMcKen
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I'm sorry you and your mom are going through this MJ. Such stressful decisions during end of life times that just add to the worry. I can't add to the experience NHWM has shared with you, just wanted to send along a hug and a prayer. I hope the meds calm her and if not, dx them. Good luck.
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Reply to lealonnie1
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MJ,

Please know that your mom will NOT be overly medicated.

Hospice care is excellent! It’s whole purpose is to keep the patient comfortable.

I would find it cruel to allow my mom to suffer in her final time in hospice.

If there is something that can help her be comfortable, then by all means take advantage of it.

Your mom will be at peace and so will you. No one wants to see a loved one suffering horribly.

I can tell you that my mom is skin and bones.

She is nowhere near being ‘out of it’ because the dosage is the correct amount for what is needed.
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Reply to NeedHelpWithMom
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I probably look like I've just sucked a lemon.

There are ways and ways of handling people who are fed up with being poked and prodded. Just the *possibility* that certain staff are doing this badly, and as a result your mother becomes agitated, and then their reaction is to dope her for her own good - !

There can be a tendency, especially when people are in a hurry or not really thinking what they're doing, to treat those needing personal care as if they are so many legs of lamb. Are you satisfied that the quality of care and the staff's training and attitude are all good enough?

Your client's/resident's/patient's speech impairment is no excuse not to talk to her. Reassurance, explanation and getting consent/giving praise before, during and after personal care routines are essential.

This is a completely separate issue from the scratching. I assume they've tried all the usual Hail Mary emollients, have they? And has anyone given her a manicure lately?

I think, in your shoes, I might ring that doctor and ask what he thinks of his patient. It'll be interesting to learn if he's actually examined her (including bloods) or is just complying with the team's request.
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Reply to Countrymouse
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Your mom is agitated and in distress. The entire mission of hospice is to prevent distress in one who is recognized to be dying. I would give it a try. I don't see what there is to be lost. If it snows her too badly, then it can be withdrawn. Worth a try in my opinion.
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Reply to AlvaDeer
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Why are they poking and prodding her on hospice?

If she is only getting aggressive because she is being aggravated I would find out what they can do to stop making her feel poked and prodded.

Listen to your gut on this one.
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Reply to Isthisrealyreal
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MJ1929 Mar 31, 2021
She has a wound they're treating, plus it's just the usual stuff like having diapers changed, getting dressed, being turned in bed -- that sort of thing. No one comes in to just visit with her -- someone's always got something to do to her. I'd be annoyed, too.
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My mom is on Seroquel and Ativan when needed. They will give the proper dosage. My mom is not zonked out.

Mom has end stage Parkinson’s disease and is now in a hospice house. My mom is very weak too, completely bed bound. She can’t even turn herself over. She will hold my hand though.

This drug has made all the difference in the world with my mom.

Mom had constant anxiety and she is calm now. She was so frustrated at times and the hospice nurse explained that it would help her focus more clearly and it has fulfilled that purpose for my mom.

I will give you an example, she would be holding her knee but would say out loud to us, “My shoulder is hurting.” Well, it was her knee that was hurting at the time. After being calmer with the meds, she is able to express her feelings more clearly.

I would have no hesitation to try this approach if I were you.
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MJ1929 Mar 31, 2021
That's encouraging to hear. Having read that it's used for schizophrenia made me feel it was probably too strong for what ails her at the moment, but we'll try it for a couple of weeks and see how it goes.
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