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Up until 2 months ago, mom was getting up throughout the night on her own to pee and spit out heart failure sputum/gerd sputum etc. One morning, she woke up and its like the lights went out. Weak, frail, fragile and didnt want to wash or dress herself anymore. Took her to ER, she had anemia and was then scheduled for a blood and iron transfusion. This helped, but about 1 month ago, she became agitated at night. Since she was too weak to turn or get out of bed, she called out for me all night long, sometimes every 5 min to get her "comfortable." Went to a psychiatrist after this went on for 1 month and I had ZERO sleep since she was calling out all night. He prescribed seroquel 25mg (didnt help ) and then tradazone 25mg (mildly helpful). It's exhausting to hear your mother call out all night long "elhp me," "give me water," "turn me." It's like she can't relax in bed and can go for hours calling me every 5 minutes. I sometimes lose my temper by telling her I can't come every 5 min and then she turns on me and says then DONT TOUCH ME, GET AWAY FROM ME, she doesnt calm down if I don't go. The screams become louder. During the day she is fine. Do I just participate in this obsessive behavior or do I yell at her (Iknow it's not her fault).

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Is she laying flat. Would she do better in a Hospital bed propped up at a certain angle? I would think the sputum doesn't drain as well laying flat. And I know with heart failure water in the lungs is a problem and needs draining off.
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Mhillwt Dec 2022
she lies only on one side - cant lie flat due to heart failure and other side has chronic rotator cuff...doesnt want 2 pillows, doesnt want bed propped up etc...she is very "particular".
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I would consult hospice.

Her agitation isn't good for either of you and not be able to move with heart failure allows fluids and mucus to build up.

Does she have the money to get an aid in for the nights or at least a couple of nights a week? You will become a statistic at the rate you are going.

As hard as it is, these are the types of situations that prompt facility placement.

I would not recommend yelling at her, maybe telling her to stop or knock it off would curb the behavior. I wouldn't count on it though.

Great big warm hug! This is a tough situation no matter what you choose.
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Mhillwt Dec 2022
hospice told us she wasnt eligible after they came for evaluation. i try not to yell but after a whole night of this, i sometimes lose it for a few seconds..and i feel awful. im getting help during day starting jan 1 - no one wants to deal with agitation at night - i interviewed a few...plus drs say its not good to have a stranger in your room when you are agitated at her age.
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Please don’t yell at her. She’s sick, and yelling accomplishes nothing. You need help. She needs to be where she has professional care.
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Mhillwt Dec 2022
I yell for 30 seconds once per 24 hrs after spending an entire night going back and forth to to her bed to turn or reposition her because sge thinks sge needs it…I’m human and so end the day caring for her as well..its24/7…..
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Get a different hospice company to come out and evaluate mom. Just bc one said no, another can say yes. While hospice won't help you more than a few hours a week, they will give you drugs to make mom calm and keep her out of pain. Along with a hospital bed and supplies to keep her comfy.

What doctor in their right mind is going to discourage you from getting a nighttime aide??? Mom needs a new doctor and the current one needs to learn compassion for exhausted caregivers up all night with Sundowning elders.

Yelling is never a good idea. Its when you know you need to bring in help to assist you.

If all else fails, consider placing mom in long term care of some kind for end of life management.

I'm so sorry for all you're going thru and pray you can come up with a resolution that brings both of you peace.
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Your profile says mom is both independent and that she can’t live alone. These are mutually exclusive. She is not independent.
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1. If her needs surpass what you can do alone, ask for help.
2. If no relatives can help, hire the help.
3. If hired aides are not available: due to cost, time needed to arrange, remote area etc, then take the next step.
4. Discuss what options ARE available with her Doctor.

This may even be an inpatient stay until further evaluations & plans are made.

Sleep is necessary to both of you. Your lack of sleep is a concern as you can't be an effective caregiver without it.

Finding your voice to speak up with confidence will be key.

You are standing up for your Mother's needs. You are also standing up for yours.
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Have you had Mom checked for a UTI? Since you said this was a sudden change for her, it’s possible there is an infection that is throwing her for a wild loop. UTIs in elderly people often cause bizarre behavioral symptoms, rather than the burning sensations, etc., that occur in younger people. If nothing shows up on the quick urine test, please ask for a urine culture. My mom goes completely bonkers when she gets a UTI and has all kinds of crazy behaviors.
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Mhillwt Dec 2022
Yes no uti
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You are doing a good job. Don’t feel bad for having a moment of grumpiness. You are deserving of feelings, emotions, reactions etc as is everyone.
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