Any advice on severe emotional hysteria?
My mom was diagnosed with early onset Posterior Cortical Atrophy (a form of Alzheimer's) around 2 years ago. She is only 59. She has been going through a pretty rapid decline and we ended up moving her into assisted living last year. Obviously this has been tough on her and it's been an emotional roller coaster, but she has always been a generally happy person with a good outlook on life.
My aunt, her sister, is her main point of contact, but I am also helping with her care. When she moved to AL she would call one or the other of us every couple of days if she had an issue with picking out clothes, or turning the TV on or little things like that. She would usually be frustrated, anxious and often already crying by the time she called. However, we could usually get her to calm down and then walk her through the steps to resolve whatever issue she was having. Recently this has gotten much much worse. She is always anxious, if she is alone for 5 min she doesn't know what she is supposed to be doing so she panics and calls one of us (usually my aunt). When she can't figure out the TV or has any minor issue she becomes hysterical and it's almost impossible to console her. She cries to the point of hyperventilation and starts repeating things like "I can't do this anymore" over and over. What starts out as not being able to turn the TV on quickly turns into her saying her life is over and questioning why she should even still be here. We try to point out the good things she still has going on, but her overall attitude is negative and she has a hard time seeing anything positive around her anymore. We have been trying to work with the care team at her AL to ensure she is getting the attention she needs, but it has gotten to the point where she is calling us 10+ times a day about needing something. She goes to breakfast then she participates in community activities off and on until lunch, then after lunch is usually when she is alone. The calls usually start at 5am and go until about 9pm, anytime she is not at an activity or meal she is calling. Usually it's just something like turning the TV on, so it's not an emergency and we don't want to overwhelm the care team with being in her room basically 24/7. Another symptom of her condition is skin picking, so when she is anxious she scratches at her skin until there are open wounds and she is bleeding. She has gloves that she wears to help with that, but once she gets into the hysteria she starts freaking out about her skin and wants someone to come put bandaids on her, even if she just got bandaids put on an hour before. She is convinced nobody is going to come and help her. The calls are getting out of control, she cannot be alone for 5 min without having a panic attack and telling us she needs someone to come to her room. It's unhealthy for her to be in constant distress, its tough on me and my aunt who both run our own businesses, and its just not possible at her current AL to have the immediate personal care she is asking for. None of these situations have ever been severe enough to warrant an actual emergency, her life and general physical well being are not in any danger.
I understand that these are symptoms of her condition and she isn't necessarily in control of these episodes, but it's getting to the point where sedating her is looking like the only real solution. She is on anti anxiety meds, anti depressants and something for the skin picking already. We also have an appointment scheduled for her with a new neuropsychologist next week. He has a background working with people who have her diagnosis so we're hoping he is able to provide some help.
I guess my question is, has anybody gone through anything similar to this? We can't be there 24/7 and the AL she is currently in doesn't provide a personal caregiver, so for the time being we have to figure out how to make the best of this situation. Obviously we don't want to sedate her or turn her into a medication zombie. Does anyone have tips on how to calm someone down when these types of episodes occur? Again, she struggles with turning the TV on so that wouldn't really be a helpful solution. She can listen to music, but often when we tell her to turn her music on she doesn't want to. We need to figure something out for all of our sanity.
Comments
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welcome. So sorry about your Mom. If your Mom is in AL she needs to be transferred to a locked secure MC facility where she can get 24/7 care by caregivers familiar with dementia. She needs anti anxiety meds or needs them adjusted if she’s on them. No need for her to be anxious and agitated or depressed. Once the meds take effect, I would have them remove her phone or let her calls go to voice mail and call her once a day. Come here often for info and support. 💜
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PS: my husband has PCA. Don’t want to alarm you but he progressed rapidly. That’s why I think your Mom should be in MC now instead of AL. Please keep us posted.
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Welcome. The dose of her anxiety medication is probably not strong enough. Things progress. Just because that dose was effective 6 months ago doesn’t mean it will be enough for her today or down the road. Increasing her anxiety medication does not mean she will be a zombie!
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I really appreciate your feedback and I am so sorry you are going through this with your husband. It is nice to hear from someone who is familiar with the PCA though. Unfortunately, we have seen a very rapid decline over the past 2 years so we expect it will only get worse. We are talking about next steps now for transitioning her into MC.
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My husband could not take Mirtazapine. It made him more agitated. They should review the meds and doses.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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