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My mom is 77 and my dad is 81. She has moderate to severe Alzheimer's. (undiagnosed) She has not seen a doctor or dentist in probably 35 years. She is refusing to leave the house, see a doctor, see a dentist or take any type of medication. The good thing is - she is physically fine. Mentally - she does not know my dad at least half the time. She is having hallucinations of other people in the house. Most of the time she does not know me or my sister. My dad is choosing to be full-time caregiver. He had a stroke 2 months ago and fortunately has recovered fine. My mom needs some type of medication - she cries a lot, has sundowners every night and she doesn't sleep much. I'm not sure how much longer this can continue. It's been extreme the last 7 months. My sister and I both work full-time jobs and help as much as possible in the evenings and weekends. My 2 biggest problems are how do I convince him that he is not capable to provide the best care for my mom and how do I get her to a doctor?

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No offense, but you and your siblings need to step up. Your mom clearly cannot make rational desisions for herself so why would you continue to let her do so? Your father cannot care for her any longer and quiet frankly shouldnt have been allowed to do so after his stroke as he needs to focus on caring for himself. I work in home health care and I literally just delt with a client with a situation identical to this. My client refused to eat or leave bed and would scream and hit at her daughter and husband (who was her sole caregiver)who was on hospice for lung cancer . Since she was so violent and upset 911 had to be called to safely remove her from their senior appartments. I was very upset with my clients family as she was clearly too advanced to be living at home still. With that being said, please don’t continue to neglect your parents heath because you are doing so when your father, who already has health concerns, needs to care for your mother, who needs professional help. Understand that your mom’s brain is not right and she cannot make the right decision for her health YOU need to take the wheel and do what is best for the health of BOTH of your parents. Step up.
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JoAnn29 Dec 2018
Without proof of incompetence and POA the children can't really do anything. The husband is in control. Laws do allow adults to make their own decisions good or bad. APS can investigate but they may not be able to do anything.

We cannot judge. We don't know what people lives are or finances. I think your clients family had enough on their plate. Maybe they thought you being there was enough. Its not easy getting in LTC. Medicaid is not that easy to get and ALOT of paperwork.
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First let me say I’m a RN of 20+ years and I would never judge a family like that! Ridiculous!
Knowledge is power so here goes... hallucinations aren’t typical in dementia except for a certain type called Lewy body. There is also a dementia like condition that is curable. A shunt is placed to drain fluid from the brain. There are medications that can help delay the progression and help to manage the symptoms too.
So for these reasons alone explain to your dad that you want her to see a doctor. Preferably a neurologist that can diagnose and treat her dementia effectively.
Explain that you don’t want to take away his right to care for your mom in his home but that you insist that she get evaluated to ensure that she is getting all the help she needs for her condition.
Find resource materials and show him how medications like Aricept can help slow declines. She has symptoms that can overlap with a urinary tract infection too. That should be ruled out.
Ultimately if you are unable to get him to get her to a doctor I do believe you should call Adult Protective Services.
Explain to your dad that should he have another stroke and was not so fortunate to be ok after it, he would want to know that she was receiving the best care possible.
Hallucinations are often effectively treated with medications too. If something as simple as a doctors visit and a bottle or two of pills could improve the quality of both of their lives how could he refuse to get this help?
No one can force him into placing her elsewhere as long as he is caring for her. Reassure him that you have no intentions of putting her in a home, you just want to see her symptoms treated as best as they can be. He’s probably frightened that he will lose her. Reassuring him that he won’t but that he could be denying her help may get him to get her to a doctor.
Sorry, for the life of me I cannot recall the dementia type that is actually not dementia but cured with a shunt. I’ll think of it eventually.
He really owes it to her to get evaluated and the hallucinations need to be treated as they are very distressing to the sufferer.
All of my best!!
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AnnReid Dec 2018
“Normal Pressure Hydrocephalus”
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Thank you, Joann, for illustrating the other side. My mother died as a direct result of her self-neglect. Mom was competent (on paper). Mom had an outdated POA (relative who lives in another state and hadn’t been to Mom’s house in 10 years).

I am Mom’s only child, and she would flip the F out on me whenever I tried to address her dire need for medical care. Mom had the best health insurance I’ve ever seen; a generous LTC policy; owned residential & commercial properties (all paid off); money in the bank. Mom thumbed her nose at all of her many, many resources.

Throughout, there was no shortage of well-meaning(?) people would tut and click and tell me - sigh - that I needed to step up. If Dante is looking to add a 10th Circle Of Hell, this is it.
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rovana Dec 2018
How frustrating.  Did you tell the well meaning(?)  "I tried and got nowhere. Why don't you have a go?"
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Well, the obstacle is your father.

I'm glad to hear that he recovered well from his stroke. What he needs to consider is what will happen to your mother if he has another. Which, as I'm sure you know, is a greater threat the more pressure he is under.

What is he afraid of? What does he think will happen if he accepts help, support and advice from outsiders? Perhaps if you can list some concrete proposals and outline the plan in more detail, it'll reassure him enough to get him started.

E.g. He could call his own doctor and take advice on how to get your mother examined.
You could download information from alz.org for caregivers.
You could point out to him that your mother is suffering terribly from what she is going through and she deserves treatment to help her.

Take it gently, and make positive suggestions rather than dwelling on everything that's going wrong. If you can win his co-operation that will be the key.

Btw, if your mother had severe Alzheimer's Disease she wouldn't be doing much. Clearly there is a lot wrong, but try to keep an open mind about what it is. Do you remember roughly when she started showing signs of there being a problem?
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MusicGirl15 Dec 2018
I can't really say when she started showing signs....my family honestly believes there are other issues, possibly general anxiety disorder. Things haven't been normal for awhile. My parents have not attended any family activities for probably 4 years, but things were off before then. I think my dad was not being completely honest. On many occasions when I wanted to visit he would say"it's not a good day." I never knew what that meant, but I'm pretty sure I understand now. In March, he started allowing my mom to call me or my sister when she didn't know him. It was horrible. She was crying and begging us to take her home or screaming at him to get out of her house. We quickly learned what he had been living with. We've been through the wandering, the sundowners, the paranoia, hallucinations, etc. I feel so sorry for her. I've been to support groups, I've talked with alz.org, I've read multiple books. I go along with wherever her reality is. I'm just at the point where she has to see a doctor. I just don't know how to physically get her in a car. I got her to the ER just 1 time. I had an emergency petition. They checked her out. She got a 17/30 on the mini-mental exam and they sent her home. I really was expecting a 72-hour stay. She will never get in another car with me. My dad is finally on board....In July he had cancelled the sitter we had because my mom would throw a fit. We had a doctor coming to the house and he cancelled that because my mom said she didn't need to see a doctor. I think he is struggling to accept the diagnosis and I feel for him as well. If I can just figure the logistics out, I'm sure he will support the decision. Thank you for your kind suggestions.....I'm working on it.
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Is your mother willing to allow anyone into the house, perhaps represented as your or your sister’s visiting “friend”, actually a professional trained in diagnosis of geriatric cognitive functioning?
If so, a conversation with you and/or your sister and this professional trained in geriatric diagnosis might be able to begin the process of identifying cognitive weaknesses that could reveal Mom’s inability to continue to be safely managed at home without additional help for dad.
For the LO currently in my care, who was demonstrating some of the behaviors you are seeing in your mom, a gentle, sympathetic interview by a calm, quiet PA trained in geriatric care resulted in a successful trial of a medication, and subsequently the development of a letter which has been a helpful asset for getting her the best care available.
Although it is in my opinion, one of the most harrowing aspects of caring for a LO with dementia, at some point it will be absolutely necessary for the health and safety of both of your parents to “take over” the situation and have mom speak to some expert outside of your family, so that at the very least, dad is informed that mom is functioning so “differently” at present that she cannot safely continue without some supports outside of what the family is already doing.
All of the advice you are receiving here suggests different approaches to the same inevitable course, and yes, there will most certainly be negative consequences and anger and grieving, and for you and your sister, the grief and self doubt and remorse of whether or not you’re doing the “best” or right things for them both.
Ultimately, those of us who love and care for people who manifest difficult, negative behaviors ALWAYS are called upon at some point or another to make informed choices from a selection of options that we are aware will cause discomfort or unhappiness for our LO, but that MUST be made to keep our LO(s) safe, as comfortable as possible, and as comfortable as can be provided.
Unfortunately, you and your sister will be dealing with your mom’s behavior in terms of differential diagnosis to whatever extent possible, and at the same time your dad’s fragile physical condition and his denial of his wife’s present needs and the impact of those needs on his own health.
I think most of us would have to admit that we held off as long as we could, but looking back on my own family situation I have to realize that holding back didn’t make any of the process different than it came to be.
It DID help me early on to do some research about the different kinds of in-home support, residential care, and different reasons for dementia symptoms. Arm yourself this way if you can.
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MusicGirl15 Dec 2018
Thank you for the kind suggestions. I can tell you understand. We were able to get a CRNP who is a friend to come to the house. She wasn't even doing a physical exam. She just wanted to talk and try to do just a mental evaluation. My mom said "no" and walked to her bedroom and shut the door. She talked with my dad and he really opened up to her and was very cooperative. She is working with a general internist and a neurologist to get some medication that may be able to calm her down enough to get her to a doctor. I guess we will see how that goes. I'm so thankful that my sister and I are in agreement. We are willing to do what it takes. We've told my dad that we will allow him to decide until we feel he is not making good decisions. We will then step in....I feel it's nearing that point.
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I was faced with the same issue. Plan a fun day with your mom. Take her out and remind her You NEED her. Make a doctor's appointment (fun day) and alert the staff of the situation. Have the staff to call your name and ask the doctor to check both of you. Good luck
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Have her primary send her to neurologist then Dr can test her give her RX I told mom if she didn’t go something serious might happen it scared her it took me 2 yrs to get her to go but now she is slightly calmer which gives me a break even if it’s a small break from there we went to see a psychiatrist which really help Dr’s don’t like to diagnose patients who might have dementia/Alzheimer’s because it could be just old age and senility
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music, it’s so good you found this site! This is such a hard situation, I’m sorry. You're doing so much, and you don’t love your next step but you’ll take it. Insurance likely covers nurse evals in-home, together with your dad figure out a trick to get the nurse in. - What doctor do you ask to order this?!.. does your dad have a doctor that may agree to become her doctor, even though she won’t come in? Some doctors still do house visits. There are also senior care managers, maybe find recommendations for ones near you and ask one how to get the order for a nurse visit.

This site isn’t exactly an in-person support group but it’s pretty close, please keep coming back! Good luck. 🙏
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My mother didn't want help in the house, was forgetting how to do everything...I made her scrambled eggs and she chewed them for an hour and never swallowed them....she put the teapot on the stove with no water in it.....I called an ambulance and they took her to the hospital...after 4 days she was put in a nursing home. Sometimes they are much worse than we think....
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Sometimes all you can do is respect them as your parents and wait. I'm so sorry you are having to deal with this. My dad never went to the doctor or dentist unless he was in severe pain. He is 89 and his teeth are broken and worn down. He says he's not in pain so I let it go. He'd have to have almost a full mouth of teeth pulled to get dentures and that would be hard on him. He did get to a neuro after a car accident and so now goes once a year. (He has TIA's and brain damage from the strokes). Medications that "slow the progression" of Alz have their own side affects. We tried them on dad, who took no prescription meds at all, and he got leg cramps and hallucenations so we stopped the medicine. Women in my Alz support group have tried the meds on their husbands too and saw no improvement. (one woman's husband said "I'd rather loose my mind than go out of it" after trying the meds) For what that's worth. Do what you can to help, what they will allow, and understand that they want control over their lives. I know you love them and that makes it hard to stand by and watch but sometimes that's all we can do. You need to control your stress level. This is a long haul disease. Don't burn yourself out early.
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Maybe a note to your Dad's doctor (he recently had a stroke) who could then warn him about the strain of being her sole caregiver without medical expertise taking it's toll on his health. What happens if he has another stroke or something that leaves him less physically or verbally able? Wouldn't it be better to help lower the possibilities of that by getting her some medical assistance? They might also be able to explain to him that there are several possibilities that could greatly improve her cognitive issues fairly easily but it's impossible to know or treat that without a medical expert and some test. For instance what if she has a UTI that's contributing to her cognitive issues, easily fixed (maybe not at this point too but then it might be dangerous) or simply hydrating better would eliminate a lot of her hallucinations (this happens when my mom isn't getting enough fluids) or the simple addition or subtraction of some foods and or supplements that would balance out her system and help issues a lot. My guess is this isn't something you should present or address with either of them as the "primary" presenter/suggester at this point since they resist your "ideas" in this area but if his medical people present it for his health maybe it will be better received as an idea and then you getting involved to help find the right doctor/situation and transport them to these appointments might be better received. It's so hard when we know what we are saying and wanting is best for them and right but they won't hear it from us, someone else says the exact same thing and suddenly they hear it, agree with it...errgg...but it's a common occurrence. Think about how difficult it will be to hear directions from your kids one day, the people you bore and cared for all their lives suddenly taking over and "knowing what is best", there are so many non reasonable as well as natural emotions tied up in it all. Being able to step back and not internalize it personally while finding a way to make it happen (whoever it has to come from) can be both the hardest, most self sacrificing and beneficial, loving thing we can do for both our parents as well as ourselves and siblings. Good luck, I'm pulling for you!
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Don’t tell her the appointment is for her, let her think it’s for your dad. The doctor can ask if he can check her out while she is there. This might work. You can write a note for the doctor telling him of the things you know about, the crying, sundowning, the lack of sleep and whatever else you know about. This way he can prescribe medication for these problems and you don’t have to talk about them in front of her. A simple test of questions by the doctor will help him diagnose the Alzheimer’s. The medication for your mom will reduce the amount of stress on your dad since the behaviors will get better to a degree, if she won’t take the medication find out if they can be put into a drink she likes, I used to put them into hot chocolate for my dad.
After the appointment look into getting aids to come in and help with care of your mom. Find out if they qualify for Medicaid this will pay for some help, and perhaps an adult daycare for your mom to give dad a break.
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They have medication that can slow down the Alzheimer’s process but they cannot stop. I would say just go ahead and hire a caregiver whether they ask for it or not. Your father will appreciate it. Interview them thoroughly be willing to trust your gut and fire immediately don’t put up with second rate care because a lot of them will offer that. Good luck
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It sounds like your Mom could have Lewy body Dementia with Parkinson's or just Lewy body dementia.... not Alzheimer's.
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She could be suffering from a urinary infection. When my Mom becomes angry and like the world is against her, #1 sign.

Tall with her doctor. HE/SHE can legally have her removed from the house and into a facility.

A caseworker will be sent to the house to talk with her and check things in the house for safety concerns. Watch her body language as well as her reactions to the caseworker being there and the conversation.

Caseworker will then report back to her doctor. He/she may recommend placing her in the hospital depending on the report. I had to FORCE my Mom to go with the EMTs as they can't. Told Mom she had 2 choices 1. Go willingly 2. I would get the safety lift belt and spank her with it and she would still go with the EMTs (they were in the kitchen trying their best not to laugh at choice #2).
She told me to go back to bed (?). I placed that safety lift belt around her as she elbowed me in the neck. I stood there bent over and told her she could keep hitting me all the way to the hospital, but she was still going!

Turned out she had such a bad infection Drs couldn't tell what she had, just that it was urinary. She was on 3 antibiotics hoping that they could clear it. It was to the point it was in her blood stream and could have killed her.

Meet with the Dr and go from there. You may or may not have Medical POA, but this falls under Elderly health concern. You don't need a POA. I did it and my sister was shocked to the point she actually cleaned the area Mom used in the house.

I did the last part when I am in TX and sister lived in Mom's house for over 10 yrs!
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I got the doctors help getting my mom diagnosed with dementia. I told her the doctor wanted to see her for another reason. And she went. Good luck!
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Your Mother most likely has dementia not Alzheimer's. Dementia causes hallucinations as well as Parkinson's. One can have Alzheimer's WITH dementia, but not Dementia with Alzheimer's. Go figure.
My step-father has Alzheimer's with dementia. During the day it's the Alzheimer's BUT as Sundowner's starts, his dementia comes out REALLY BAD. This man wouldn't say SH** if he had a mouthful before all of this, now when the dementia hits....stand back. My husband and I have had to talk him down because he'd start cussing at someone and shadow boxing with some really stay out of his way swings!!
The Alzheimer's is when he asks me if I'm one of the Fields kids. That is Mom's side of the family.
There is a difference. Mom suffers from Diabetes 3 Alzheimer's. This is a new one. This is due to the brain being the last organ diabetes attacks.
Get Adult Protective services about the situation and they will investigate by coming to visit, ask questions etc. The caseworker will make recommendations to her Dr. Dad will also be examined.
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