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My mom has been somewhat confused the past few years, since my dad died. She often doesn't know that he's dead and will sit up suddenly and say "Where's Daddy?" but accepts it when I say he died a few years ago. At first she was obsessed with her finances and burial expenses, then thought my sister (who lives locally) was writing checks out of her account. We had the doctor put her on an antipsychotic and once we got the dosage right, it helped. Then, about a month ago she became very lethargic, slept most of the day, was more confused, and completely incontinent. I asked the doctor for a hospice consult and she was accepted into their care. Then last week she became very talkative and made sense...but only for a day or two. As she became more alert, she has become more excited and confused. One of my sisters lives far away and calls several times a week (to show her support for me) and has said that Mom's conversations are almost impossible to follow but she is in a good mood and it's better than when she's "preachy." One of my friends said perhaps last week when Mom was lucid that is could be her last rally before her passing, like happens with so many ill people. This week, however, her mental status has become more confused and borderline agitated. Should I ask the hospice nurse if we can give her something to calm her down or should I just hope that she settles down again? I can only take so much before I start getting agitated myself. My husband is a wonderful support for both of us, but he can tune her out after a while and I can't.


As an aside - I have an RN sister who lives locally but isn't much help. She has often said (in a fake concerned way) that she thinks Mom may be over medicated but it's ok if that's what it takes for me to be able to handle her and that it's better than her being in a nursing home. This same sister has also accused me of being abusive to my mother when I didn't give her an enema when she was constipated (which seemed a little extreme to me and caused a huge argument). I gave mom Miralax, then added Metamucil, then a stool softener, and eventually she became incontinent of diarrhea for over a week. Of course, all my sister said then was that I needed to change Mom more often because she was getting a yeast infection. I work full time at home and I can't make Mom let me change her diaper without her getting upset. Sometimes I want to tell my sister if she thinks she can do better, then she can move Mom in with her, but I know that wouldn't help anything (she wouldn't take Mom anyway and if Mom heard me say that she would think she was being a burden and it would hurt her feelings). I love my sister unconditionally and don't want to harm our relationship but it's hard sometimes.


Anyway, does anyone have suggestions on what I should do about my mother's agitation and excitability and confusion? Should I ask the hospice nurse if mom needs an anti-anxiety medication or is that being selfish because I don't want to listen to her go on and on?

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Even though your mom is on hospice care, you are still her advocate. Certainly, discuss the issues that concern you with the hospice nurse. I'm glad to hear that you took the initiative to ask for a hospice consult. Most peopple wait much too long before doing that. Ignore your sister's comments, unless, like you say, she's willing to take mom in. The hospice nurse will medicate your mom as she (the nurse) sees appropriate. It's great that your husband has been supportive and that you're able to care for your mom at home.
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I do believe that Hospice would have volunteered suggestions of medications if she thought they might help; I am certain also that given she is the nurse working with you that you discussed all of this with her?
I think your Mom at this time would benefit from a thorough professional assessment starting with MD and ending with neuro-psyc eval. It is impossible to tell from this what her diagnosis might be, her stage, and what medications might help.
If you are dealing with something primarily psychiatric, then know that psychiatry is anything but an exact science, and has become a specialty in which differing drug cocktails are tried until the best effect occurs. If it is a case of dementia some drugs may help, but much less so.
Eventually you will have to decide if placement is an option. It is unlikely to help your Mom, but may give you back your own life.
I am so sorry for all you are going through.
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daddysfavorite Nov 2020
Thank you for your answer. We actually had an appointment made for Mom to be evaluated several years ago, but the center was 1-1/2 hours a day and would have required her being tested, then going back later in the afternoon for the results. When we talked with her primary care provider about making an appointment, Mom was insistent she didn't need any help and became highly agitated whenever it was mentioned. I made the appointment anyway, but decided to cancel because even if she didn't know where we were going, she would have figured it out when we got there and who knows what her reaction would have been, other than it would not have been pleasant. I could not handle the idea of the 1-1/2 hour drive home with her screaming at me that she wasn't crazy and she wasn't senile. Even if it hadn't lasted the whole drive home, I have been in the car with her when she became angry and started screaming and it's something I cannot handle at all. (I have been in the car with her and my sister when Mom started screaming because she was angry.)

Her PCP started her Risperdal when she became paranoid that my sister was writing checks out of her check book and it took a little while to titrate it to the correct dose. She is on the lowest dose now but the doctor would increase it if I called and said she needed it. She has been going to that doctor for close to 20 years and I've been going for 15 years, so we have a good relationship and he has seen her rate of deterioration. He also ordered alprazolam as an anti-anxiety med, up to 1 mg a day. She takes 0.5 mg at bedtime and I only give her an extra 0.25 on the very rare occasion when she has become highly agitated.

Although she is in hospice, I will be surprised if she stays in beyond the initial 90-day certification. I looked at the Medicare dementia criteria for hospice and, other than the first week or two, she doesn't meet the criteria. It has been nice to have their support.
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Definitely ask the hospice nurse for more medication to soothe your mom's agitation. There is no good reason for her to be suffering in ANY way nowadays, and agitation is just another form of suffering (for BOTH of you).

As far as your sister is concerned, she's an Armchair Critic; passing judgement on what you're not doing, or doing incorrectly, from an armchair across the city or wherever she lives. It's so easy to tell another person what they're doing wrong while the person doing the complaining isn't doing a darn thing HERSELF! Aggravates the snot out of me. Tell your sister to come care for mother HERSELF if she has all the 'right answers' and you don't! Giving an elder an enema is the absolute LAST resort, for petesake, and I'm glad you didn't do that. Look how the rest of the laxative products worked out. It's a no win situation oftentimes, isn't it? You have my sympathy for all you're going through right now.

Don't be shy about speaking to your hospice nurse about everything, including your own fears and concerns about what's happening. The death process differs for everyone, and there can be periods of rallying and other periods of sleeping and being totally incoherent. No rhyme or reason to lots of it. Here is a link to one of the best articles/charts about end of life signs & symptoms that I've come across:

https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/

Wishing you the best of luck with a difficult situation. Sending you a hug & a prayer for peace
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I think you shoukd call the hospice nurse and report mom's change in mental status. It could be a UTI. It could be a LOT of things but a dispassionate medical professional needs to sort it out.
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To me it sounds like it's time to place your mom in the appropriate facility, if you are even contemplating medicating your mom more just so she doesn't get on your nerves anymore. And if your RN sister thinks that mom is already overmedicated, she probably is. That could be the whole problem right there.

I would go over with the Hospice nurse and Dr all of her medications and see what they say. They know what true agitation looks like, and can advise you accordingly. Best wishes.
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