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My dad is actually the caregiver for my mom. She’s been suffering from paranoia (a group of people after her, being stolen from, etc) for 10 years and has what we called psychotic episodes. Even back then. We tried and tried but she always refused help. Fast forward to 2019 and we lose my sister to suicide with paranoia symptoms that remind us of mom. 2020 brings her turning on my dad, accusing him of cheating on her. We live out of state and my dad didn’t truly let us know how bad it was. Thankfully his brother was nearby to help with several bad times. We went through APS and he was given guardianship, so she had to go in for evaluation. They say it’s degenerative dementia of Alzheimer’s type. Today she is putting on a scarf though its 90 out. We never talked to a doctor about this diagnosis. What should we expect now? I witnessed her episode last night and wept for what my father endured on his own the last year and a half.

It's time to place your mother in a care facility for her own good as well as for the sake of your father and your family.
Your mother very likely has a long history of mental illness (like your sister, may she rest in peace), that has gone untreated. She also has a type of degenerative dementia that the doctor's think is Alzheimer's. This will not get better. It will only get worse. Your mom needs to be in a care facility before the "caregiving" kills the caregiver, your father.
People don't realize how much of the time the caregiver dies before the care receiver. My own uncle dead at the age of 61. He was the sole caregiver to my aunt (17 years his senior) who has a history of untreated mental illness and then Alzheimer's. He had a heart attack four years ago. His wife is still in the nursing home her kids put her in when he died.
Your mother needs to be placed in a care facility where she can be taken care of by professional staff in an environment that is equipped and staffed to handle her needs.
Please look into it.
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Reply to BurntCaregiver
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OMG … what took you so long ???
to understand the situation???
your father needs help ASAP or he’ll die before her.
your mother needs placed in memory care and your dad can visit .
get going !!!! Your dad needs you !!!
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SilHay Jun 17, 2021
to get a diagnosis? My mom was capable of making her own choice for a long time and short of forcing her, she wouldn’t go in. The episodes started against my dad last year which is when we called APS to help us. Guardianship was granted in May and she went into be evaluated that same month. We are looking at memory care places now. I want to help my dad as much as my mom and I know he’s high risk.
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I'm so sorry for the loss of your sister, your mother's Alzheimer's and what your poor father is enduring as her caregiver. Since he has guardianship of her, what comes next is in his hands. He can look into placement for her in a Memory Care Assisted Living community where she can get 24/7 care and he can go visit, if there is private funds available to finance her stay there. If not, he can look into Skilled Nursing with Medicaid. Or hiring in home help to give him well needed respite.

In the meantime, she needs to see her primary care doc or a neurologist who can prescribe medication to help her with the behavioral issues and paranoia, at least. Nobody should suffer like this, for years and years, without trying some medication to ease the symptoms! She's so young, too, which makes it even harder to witness such a decline.

Go to Alz.org to read up on the stages of AD, what to expect, how to cope, and to find resources and live people to speak to at an 800 phone number. Support is vital for your dad, especially.

Wishing you and your family the best of luck with a difficult situation. God bless you.
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SilHay Jun 14, 2021
thank you. She is on a slew of new medicines and appeared to be much better. Something upset her yesterday and it’s been bad ever since. I’m not sure if anything with help her delusions.
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She does not have a good grasp of reality and her decision-making skills will be faulty. She probably gets scared when things go missing or things don't make sense. The fear and anxiety is expressed in agitation and outbursts. Please talk to her doctor about anti-anxiety medication. The medication should help to calm her anxiety, and will probably make her a bit sleepy until she is used to it. Some medications take awhile to reach therapeutic levels. While you are waiting for that time, she needs a consistent routine and environment that is safe.
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SilHay Jun 19, 2021
Thank you, she is taking one now for anxiety, started when she was in for evaluation. That would be coming up to one month ago. How long do you think it takes to be fully effective?
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So sorry for what you all have been through. When mom goes for follow-up, make up a list of questions you have for where she is in her diagnosis and any other questions that come into your mind (or your dad's mind as he is her guardian).

Do research on the type of dementia she has - each type of dementia has some specifics in how and where in the brain that they hit. But having said this each person affected has their own journey.

My own father suffered from mixed dementia - alzheimer's (AD) and vascular. The vascular was from strokes in the balance center of his brain causing him to constantly fall and the AD - well memory loss. His delusions were generally very mild and focused on having to have money to pay off some fictional debt he had incurred. Though one (I wasn't present for - he was in SN at the time) had to do with a fictional building being on fire with children trapped and wanting to get into the building to rescue the children. The staff had to hold onto him so he wouldn't fall or otherwise hurt himself.

Also make plans for the future - I'm sure you know that she will not get better but continue to devolve and the time may come where caring for her at home may be just too much. It isn't unusual for a caregiver to die before their charge/LO. So lay the ground work for these plans so there will be no scrambling at the last minute.

Best wishes to you all.
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Call the helpline for free advice often from a Social Worker at the Alzheimer's Assn. 1-800-272-3900. Your father needs help! The stress for him is much more than what you see. I would be more concerned that he may die before her. In home care still has a lot of pressure on him. Your mom needs a memory care facility. Your father needs a lot of rest and help managing the home and being her Care-Advocate. If you can, get him into and Alzheimer's Support Group whether local or virtually on Zoom.
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SilHay Jun 17, 2021
Thank you for the number and suggestions.
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I very strongly suggest that you support your dad in placing her in a facility.
Even with his brother's help, this will take a huge toll on him. With your mom in a safe place, your dad can visit her as much as he wants. He'll have the option of leaving anytime it feels "sticky" - that's important for his health and wellbeing.
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The first thing to do is to have the POA for health care meet with the MD who diagnosed; there the complete diagnosis can be written out and shared with the family.You can then do research knowing that each individual is going to have a dementia that is about as individual to that person as his or her own fingerprint. I do think it is unusual if a child of your Mom's had similar episodes at a very young age? That would be early onset as well. This should all be discussed with the neuro-psyc doc; there should also be documentation letters given and dated. So sorry for this sad diagnosis. There is little we can tell you about your Mom as an "individual case " with Alzheimer's. If you stay on Forum you will read many many differing cases for each type of dementia. Wishing you the best.
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SilHay Jun 14, 2021
Thank you, with my sister she stopped wanting to go out and also believed people were after her children. She may have had schizoaffective disorder but even though her husband took her to docs, they just said she was depressed. When her daughter was diagnosed with cancer, she believed she caused it. At the end, she was hearing voices.
My mom sees her primary tomorrow. But there is a follow up on Wednesday with someone from the facility she had been in.
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This is a terrible situation for all concerned. Your mother is completely gone and nothing is going to fix her. What your father is having to handle is just too much and not fair to him. He is still here and has the right to some quality of life. He should NOT have to endure this burden. She must be immediately placed where she is cared for and your father has some much deserved peace. No one should have to be forced to put up with this.
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Riley2166 Jun 17, 2021
And right now get a doctor involved to see if medications can calm her behavior down until she is placed. Do NOT wait.
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Imho, she needs to see a neurologist. I am sorry for the loss of your sister.
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