Mom is between stages 5 and 6 on the dementia scale. About 3 months ago she began rattling the bars on her hospital bed at night between spells of sleep (she is in in-law unit w/private caregivers). Symptoms have now digressed and become nearly debilitating. She is now calling out "is anyone there?" and "help me!" while requesting someone hold her hand, even during the day. Early on Doc ordered low dose of sleep aid Trazadone and that was helpful for a few weeks. Then we had to add a mild anti-anxiety med for daytime. Now she is back to calling out during day periodically and all night many nights. Is this just the way it is for someone with dementia or do we just keep increasing med doses? I'm grateful she is not mean at this stage but I can barely go out and see her anymore it is so incredibly annoying. I have always had a difficult relationship with her anyway so it is particularly hard. I am also afraid she may drive her lovely caregivers away. I would consider possibly moving her but not in this environment.

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My mom was on Seroquel for four years that I cared for her for symptoms of anxiety and agitation. The initial prescribed dosage was 12.5 mg, half of the lowest dosage pill that is made once a day at 4 for her sundowning behaviors. Over the course of four years the dosage increased to 75 mg a day. Many meds lose their effectiveness over time and need to be increased and/or stopped to maintain the desired effect.

Another example, off topic, is Boniva for osteoporosis. My mom had been on it for about eight years when a study was published that stated Boniva should not be prescribed for more than four years at a time, then a break from the med should be taken because prolonged use caused much more brittle bones that when broken resulted in much more complicated breaks.
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Thank you so much for your support and good advice. Fortunately I don’t think at this point her caregivers would actually ever leave as I would try and put something in place before that happens. I feel so bad for her most of the time but some days I just can’t take it. I did speak with her doctor today about hospice. He also suggested CBD tincture if I wasn’t wanting to give her heavier medication. I have a lot to think about but am so grateful to all folks here on this site for their support and insight ❤️
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I am so sorry that your mom is going through this.

Thankfully she has caregivers that can hold her hand and reassure her that she is not alone when she gets agitated.

If the caregivers are not handling this well it may be time to find caregivers that are well versed in dementia care.
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CleanupBatter Aug 2020
Thanks for your support and thoughts Very much appreciated!
Agree with lealonnie.

Hospice eval is a great idea. Shift her care, if appropriate, to keeping her calm and safe.

I'm not a big med person, but I think it's clear that she needs more meds to make her more comfortable. She is anxious and afraid, I think, and wouldn't it be nicer for everyone, mostly her, if she were calmer and happier?

And yes, a facility is definitely a possibility, even in these crazy covid times. They should know how to safely bring new residents in after all these months of dealing with it.

Good luck!
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I think your mom needs a hospice evaluation right away, personally. Being this far along the dementia road means that she needs anxiety relief, and hospice can provide that for her and make her comfortable so she's not afraid or crying out for help. That's too hard to witness, and pointless, really, when help is available. At this point, you don't care about 'addiction' factors or things like that, you should only care about her comfort because dementia is a terminal illness.

Care givers for late stage dementia patients are familiar with this type of behavior. If your mother is driving them away, it's time to hire a new set of care givers who have more experience and compassion for people riddled with dementia.

If you do go see her and hold her hand, that may give her a great deal of comfort at this juncture of her life. Why not give it a try? My aunt with Alzheimer's used to do the same thing; all she wanted was human contact. During the night is a different story, of course, and she needs a stronger sleeping pill; Trazadone isn't likely enough to keep her asleep all night. Call the doctor and see what s/he says, and also see about a hospice evaluation; they really DO make life much easier for the patient AND the family.

You can move her into a hospice facility or a Skilled Nursing Facility if you'd like, many are accepting new residents in spite of the virus which has NOT infiltrated a lot of these places. I'm looking into moving my own mother into a SNF in the next few months and they are covid free. She will be moving from a Memory Care ALF where she's been since 2015.

Wishing you the best of luck
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