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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.

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There should be an atty somewhere in this, since dad was granted guardianship. Is this an EC atty? It might be good to sit with dad in a meeting and ask a lot of questions. Guardianship requires keeping good records and reporting on care, finances, etc. He may need help with that and if you can sit in on the meetings, you can learn how to help him with that.

The EC atty can also assist with assessing finances, etc. If they need Medicaid, you will appreciate the help/legal advice. He can keep his own income, the house, a car and half of any assets. Sometimes the community spouse is allowed to keep more of the assets and/or the patient's income, if cutting it all off would leave him short-funded.

Meanwhile, check the various places nearby. There may be a residency requirement for Medicaid as well. If they've lived there a few years, they should be okay, so long as you ensure the facility accepts Medicaid and that she qualifies. Moving them back to be near you could delay getting Medicaid. If they can self-pay for a few years, then by all means, discuss moving back with your dad.

Hopefully the medication can keep her mostly stable. If possible, hire some help for her care OR help for dad so he can provide the care while you seek alternate residence for mom. Do try to get advice, both from the social worker and an EC atty. She's beyond having to set up a will, POAs, etc, so it would likely not be too expensive to spend a hour or so with EC atty. Have all questions and relevant information (assets, income, etc) available before the meeting, to get the most out of it. Take notes! Ask LOTS of questions and follow up questions.
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SilHay Jun 2021
Thank you for all this information. My dad had the foresight to set up himself as POA about 3-4 years ago (they did their will then too). Last year, when we didn’t know where to turn, we talked to his lawyer who did that for him, and had previously helped our family with my grandmas nursing home. She couldn’t help us because of my mom being his client but referred us to a lawyer who in turn gave us the advice to call APS. I made the call right after that and finally things started happening to get help.

My dad is going to get an appt with his EC lawyer to ask about setting up the financial part of putting my mom into care. I had thought about them moving here and then putting my mom here in a place, so thank you for telling me about the delay with that. They have lived in their current state for 7 years now.
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Depending on how bad the dementia is and if your Dad can afford he could hire a Caregiver for several hrs a day or a Live in.
If he's not able to care for her or hire help or they move 8n with family then she'll have to go live at a Senior Home which isn't fun.
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disgustedtoo Jun 2021
OP's description of what's going on doesn't exactly sound like fun to me.

As for "...a Senior Home which isn't fun.": SAYS WHO?
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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 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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SilHay, at least for the short term, it sounds like you and your dad are now on track for getting your mom the care she needs and the respite your dad needs. After the immediate crisis is resolved, for the longer term you and your dad might want to discuss the pros and cons of your parents moving back closer to you. While my dad was in memory care I witnessed several of the residents' behaviors and care needs increasing to the point that they were forced to move to facilities that were licensed and staffed to provide more intense care. These moves required a lot effort by, and caused a lot of stress for, the residents' families. Also, while having your mom in memory care will reduce the time and energy your dad will need to oversee your mom's care, as her husband and legal guardian, it will not fully relieve him of those stresses. It would be a lot easier for you to help them both if they lived closer to you, but obviously there are a lot of other factors to consider. Best wishes to all of you during this difficult time.
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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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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 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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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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Your profile says: "I am caring for my mother Valerie, who is 70 years old, living in my home."

? You state above that you live out of state.

There are two people here in the mix, and your father is no less a consideration than your mother. How can he possibly continue to be her caregiver?
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SilHay Jun 2021
Yes I wanted to join this site as a daughter looking for help but it only wanted the caregiver information. So no, I am not the caregiver, it’s my dad. I wish they had never moved out of our state when dad retired but dad thought it would be better for mom. She still did a lot by herself then.
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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 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 can empathize. When my mom had Alzheimer's, it was compounded by paranoia, (which she never had before). She'd accuse my husband of going through her purse (which had $5 in it and a lipstick). She'd accuse me of stealing too. Once she thought someone stole her dental bridge! (It was in her mouth.) I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (I thought of the title when I was driving home from work 1 day, and I realized that this "broad's" once broad life was reduced to the pressing health concerns of my mom and dog.) It addresses many of the issues that you speak about. I have an anecdote entitled "Steel Yourself for Stealing." There's another one called, with a nod to Simon and Garfunkel, "A Bridge Over a Troubled Daughter." My mom also would dress inappropriately for the weather, and I had to convince her to take off some layers of clothing, when it was, as you also experienced, 90 degrees. In terms of what to expect, every day was a new adventure for us. There seemed to be no rhyme or reason as to which days she was more cognizant of things than others. There seemed to be no trigger in terms of what would set her off, with these paranoid delusions. I had to remind myself that "illusion" (ill-usion) was probably an accurate term to describe her mental state at times, since Alzheimer's is an illness, after all. My mother-in-law also had Alzheimer's, and she'd often think that my husband was her (late) husband, and that he was having an affair, with me! It's a wild ride. Best of luck.
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One of the symptoms of dementia is inappropriate behavior, like putting on a scarft in hot weather, or not wearing a coat in cold weather. Talk to your father and find out if this is too much for him. Can you get aides to come in to help your mother and give your father a break? Would he and your mother accept that? Talk to her doctor about her condition and find out if there are medications to calm her symptoms. You may need to go to a specialist. Your father and mother have 2 basic choices, get in-home care to help, or place her in a memory care facility. Lock up all valuables and financial papers if you will be having people coming into the house.
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SilHay Jun 2021
Thank you, we are looking at places now and the social worker came by yesterday after my email to her. She also gave us names of nearby facilities. I had a rare private moment to speak to dad and he is ready. Mom seems to not remember the episodes at 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 2021
Thank you for the number and suggestions.
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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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On the upper left where those lines are, are “Caregiving Topics”.

They are listed alphabetically.

Those can be short introductions that can get you started.

Teepa Snow on YouTube has helpful videos.

Best wishes to you.
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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 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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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 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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