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My mom has had dementia since 2017. We placed her in MC in 2020. She’s had a good run. Lately, she has times where she can walk and talk fine, and then the next few day can’t keep her awake and she can hardly walk.


She’s been cycling like this since the beginning of the year. I’ve taken her to the ER a handful of times. One time she did have UTI, high potassium, and another time dehydration with lowered magnesium. Two weeks ago, her blood and urine came back good except for dehydration. This is because she will have a day where she can’t stay awake and staff don’t have time to sit by her side to make sure she drinks. I work, but when I can I’m there making sure she is drinking and eating.


To top it all off, her doctor switched her from Seroquel to Zyprexa in December. Since she has become so tired, the assistant director of nursing called the doctor and they decided to take my mom off of antipsychotics cold turkey. It was low dose — only 25 mg of Seroquel for many years and then only 5mg of Zyprexa. I’m reading this can take a few weeks to get out of your system. Some side effects of this include fatigue and weakness.


My mom can’t seem to catch a break. It’s so hard right now to know if this is end stage and our new norm, or from other causes.


Has anyone experienced this up and down roller coaster? Going off psych meds?


My mom is 87 years old. I’m going in this morning to check on her and if she’s still so weak, I’ll probably have her go to the ER again to see. The nurse said she’s not having much output with urine, which could be just dehydration. Yesterday, I sat with her all day since I didn’t have to work. She drank 4 cups of drinks then. If this is her new norm, then I feel it’s time to check out hospice care.

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It takes awhile for psych meds to work: to clear from the system, to get to a therapeutic level in the blood, and to be adjust to desired levels. Seems the only thing you need to work with MC is that she gets scheduled "drink times" so she won't get dehydrated.
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Reply to Taarna
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I agree that you should get hospice involvement now.
I'm sorry, but it isn't likely that any care home would keep getting your mum to drink, if she isn't aware enough to pick up her cup and drink herself.
Also, I don't think that it's right to keep waking someone who is weak in order to make them eat and drink. Sleeping more, while eating and drinking less, is a natural process towards the end of life.
If your mum was otherwise alert and well and thriving, it would be worth taking her out of bed and putting her into an ambulance and into an ER waiting room, then to have tests etc. However, it really doesn't sound as if that's the case, so it doesn't seem fair to put her through that for no good reason.

Yes, your mum probably is dehydrated: she's not drinking. Rehydrating her won't stop this from happening again a week from now. It's time for hospice.

Please think now in terms of making sure your mum is pain free and as comfortable as is possible, given her weak state. And be at peace with this process and with the loving care you have provided.
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Reply to MiaMoor
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The up and down roller coaster is common toward end of life as is more and more sleeping. Not everything can be fixed. You might ask her doctor to evaluate her for Hospice eligibilty.
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Reply to RedVanAnnie
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Read up on Skin Turgor.
At her age a single skin pinch dehydration test won't tell you much.
But if you check it every day you may be able to detect changes.

I wish someone would unlock the secret to keeping them hydrated.
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Reply to jwellsy
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Appears to be hospice level and sorry your mom is suffering. Get her doctor’s evaluation for hospice care placement.
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Reply to Patathome01
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Are they logging her fluid intake? How many ounces she is taking in a day?

It sounds like Mom swallows okay?
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Reply to brandee
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I think all of the above are contributing factors.
It's not a good idea to stop antipsychotics cold turkey! Even a low dose over many years. That could certainly explain some of the side effects.
And, dehydration will cause weakness and delirium. It sounds as though she is frequently dehydrated. This would explain the up & down roller coaster effect you describe.
And, of course, her body could simply be winding down, and as it does, she will lose interest in eating or drinking.

A hospice assessment is a good idea, no matter how close she is to end of life.
Hospice will provide more attention to her care, and keep her comfortable.
If she responds favorably and improves, they will simply discharge her from Hospice care.
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Reply to CaringWifeAZ
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My husband has had a similar experience. He is 75 and I started suspecting dementia around 1017, as well, but I don’t think he’s as far along as your mom. A few months ago, when he started experiencing anger issues, sometimes irrational ones, his doctor put him on Rexulti, which seemed to help , though he was tired a lot. Then the anger issues ramped up again and his doctor added Seroquel. After a week, he started feeling awful, almost as though he’d been poisoned. So, at the doctor’s direction, we discontinued both, about a week and a half ago. Withdrawals were not fun, but he is doing better now, but still very lethargic. He falls asleep in his chair routinely and goes in and out all day. Maybe it’s still withdrawals, but I was wondering if this is going to be the norm, too.
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Reply to BELyons
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Mother may have up and due a with health
but this just sounds like hospital neglect
dehydration can cause a host of issues - if mother is severe why hasn’t she been put in a water drip
not to live on but it can wake her up enough to maybe help herself a bit more
id speak to her doctor
its only end stages because their snack attitudes are speeding the process up
im sure they can pop in and put a glass to mothers head every hour until she’s back hydrated
I think you should speak to who’s in charge because it doesn’t sound like they are bothering much
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Reply to Jenny10
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Yes, I agree with the others to have your Mom evaluated for Hospice. The Hospice nurses that treat my husband are wonderful. They are compassionate and have given me an understanding of what he is going through, and what to expect. They are making this journey bearable.
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Reply to JanPeck123
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Please get your mom qualified for hospice care. It is detrimental on her going to the hospital all the time. Not sure if your mom has a terminal condition causing this, but she needs a diagnosis. The breathing and tiredness could be some type of heart failure. I feel that your mom's care is being overlooked. Ask questions and get to the bottom of this. My mom's PC nurse was a quack.
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Reply to Onlychild2024
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I agree with others and with you that it is time to consider Hospice. They will answer all your questions.
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Reply to AlvaDeer
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I personally feel it is never too soon to have an evaluation done for Hospice.
I think this is a wise step.
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Reply to Grandma1954
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Yes, I would discuss having her assessed for hospice. My MIL was in LTC for 7 years on Medicaid in a really wonderful faith-based facility. They suggested hospice for her when she started having almost no appetite and losing weight consistently. Within the week she started hospice her heart rate dropped and we got called in to say goodbye. When we got there she wasn't responsive but we knew she could hear us. She passed withing the hour, peacefully, with all of us around her, no morphine or any meds. She was 89 with dementia. Please consider hospice.
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Reply to Geaton777
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