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Roseformom Asked February 2018

At what point does mom need 24 hour care?

My mother is very far in her dementia. Her husband neglects his duty, but when someone visits, they think she's okay because a husband is there. My aunt, who only comes once every four or five years to visit yelled at me, "At least she isn't being beaten!" My brother finally agreed after fighting with me about it for years, that she needed caregivers after mom had not been bathed in years because husband wouldn't do it. I had noticed for years the smell, so bad it was on my mom's skin, and would smell up my whole house, and called Alz. Association and reported to APS, but APS said her home needed to be covered in filth or she had to show signs of physical abuse for anything to happen. He also would leave her alone, sometimes weeks at a time and her teeth were rotting out. Husband would not take her to the dentist or doctor, but he would take himself if he had anything. Yes, I told authorities, but nothing was done. And, my brother fought me for so long, and insisted she didn't need help. He lives thousands of miles away in another state. There is so much more to this story, as far as my brother and my mom's husband fighting on me getting her help, I can go on forever, but let's get to the present. Mom had to go the emergency room and stay in the hospital last summer 2017 because of gall stones. My brother came out and enacted POA. So, finally mom has caregivers, but since she "graduated" from hospice this past week, he wants to get rid of her daytime caregiver that comes 4 hours a day, and just have the one at night. That leaves my mom with only her neglectful spouse for 16 hours a day. He does not bathe her, change her diaper, wipe her, nothing. And, he leaves her alone. She wears diapers and puts toilet paper in them instead of wiping. She hates taking showers and says those people (caregivers) in that place make me take a shower. She does not know it is her home she has lived in for 44 years. When I gave her my Christmas card, she would pick it up from the table, and read it, put it down. Pick it up, read it, put it down, repeat, repeat. Over and over within seconds of putting it down. Husband buys her ice cream, Pepsi, and KFC, to eat. She eats it all day and she has diabetes. Caregiver has had to ween her off of these things because husband will just feed her this stuff and buy it for her constantly. What do I do? My husband says to just let my brother deal with it, but I really can't stand my brother for insisting on reducing her care. Does she need 24 hour care at this point? I fear for her because husband leaves her alone, has gotten rashes from not being changed, etc. Mom has over $6000 a month for her care. Brother says he wants to cut day caregiver and mom have caregiver only 10pm-6am. I'm EXTREMELY concerned. He wants to save money for later if she needs more care and he wants her to stay in her home. I told him we need to take care of her NOW. There might not be a later. If there is, she has plenty of money to be in memory care when and if she needs it. In fact, memory care might be cheaper than what she has now. She paid off her house 30 years ago. I told him we could sell her home to pay for her care when the time comes. He now says he doesn't want to sell her home until she dies. He won't answer my question on why wait until she dies. My brother has always been doing the wrong thing and I've been goody two shoes. He says this is his chance to help mom. I feel bad because I feel like he may be misusing her and her money by not getting her the care she deserves. At what point does my mom need 24 hour care? I told my brother it doesn't matter where she lives because she doesn't even know where she is. In her will it says she wants to live at home if it is reasonable. Is this reasonable at this stage of dementia and with care only 8 hours a day, and only at night? Yes, her husband is there, but he just sits at home all day and watches TV with no interaction with my mom. My brother thinks it's great that her husband takes her for pizza and Italian dinner once a week. Last time I went to the house, there were 6 water bottles and two left over salads in the refrigerator, waffles in the freezer, and a couple of soup cans in the pantry. If nobody is there to watch, my mom will deteriorate faster. The caregiver dresses her, gives her meds, bathes her, interacts with her, changes her diapers, etc. I'm losing sleep over this. He will go back to his home far away after being here for a week. I was happy that my mom was getting a caregiver especially during the day so I wouldn't have to worry about her while I'm at work. I live in the same town. What should I suggest to my brother? Is he doing the right thing? I told him my concerns, but he's brushing me off again. We have had disagreements over her care, me saying she needs it, him saying no way for years now. Is it feasible to have 8 hrs/day care just at night since a husband is there? He won't wake up to take her and clean her in the restroom.

Brownsugar61 Feb 2018
😮 have any one thought about Elder Abuse . Get in touch with AARP or Area For Aging . Report them . You are just as guilty having the knowledge of this type of action is happening to your parent. Don’t let that POA fool you, you looking out for her safety. Abuse is unacceptable that is your parent and others see the same as you do or more. Shame on all people whom don’t report this .

Roseformom Feb 2018
I'm not interested in doing guardianship due to the money involved. I'm already the "bad guy" anyways because I was the one who had my mom diagnosed. I'm also the one who talked with the doctor about mom getting lost and she had to lose her driver's license. I'm also the one my brother said he was going to report to APS for getting my mom a caregiver many years ago when he said she didn't need one, when she was looking and smelling like a homeless person and in pain from not being taken to the dentist or doctor. Thank goodness my mom's best friend is on the same wave length with me, and is very supportive. I have a very supportive nuclear family as well. But, it has not been an easy road for me either. I can say that I am thankful that my brother does have POA because now it's his turn. His turn to see what's really going on, instead of hearing it just from me. His turn to worry and stress like I have been all these years.

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Grandma1954 Feb 2018
You could file for Guardianship.
I do not say this lightly as it can be a difficult undertaking. There are costs involved, court dates and plenty of paperwork. but if you feel strongly about this what would happen is the court would send a court appointed guardian (this is a Guardian ad litem) to assess the situation to determine if your Mom needs a Guardian. Once the court appointed guardian ad litem reports to the judge they could approve your petition to become her guardian.
I can almost guarantee that this will make you "the bad guy" in the family.
Please read up on this and talk to a lawyer, preferably one that knows Elder Law.

Roseformom Feb 2018
Thank you all for your advice! I truly appreciate it.

dogperson Feb 2018
Typically what has to happen is something bad, like a bad fall, that lands the person in the hospital. From the hospital she goes to rehab. Rehab will recommend a discharge plan that states what sort of care the person needs. For my mother in law, rehab stated that she needed care 24/7, which allows us to work toward getting her into a nursing home.

I'm afraid at this point you're waiting for the "something bad" to start this process. Be ready to tell the rehab people about your concerns so they can take them into consideration when they make the discharge recommendation.

Roseformom Feb 2018
One last question, do you think someone in this type of situation needs 24 hour care? When do you decide? Or, keep her at home and have the one caregiver as long as she doesn't have any sores. She doesn't get any social interaction with her husband, except for the pizza night once a week. She also gets left alone. Or, wait until she fights with fists to take showers, etc. I don't think she would ever do that, but who knows?

Roseformom Feb 2018
Thank you Countrymouse. Yes, this was all my mom's doing. If you can't trust your own son and husband, that's sad, but you're right. She chose him as a husband. There really is nothing I can do but keep on reporting anything that is neglectful. Thank you.

Roseformom Feb 2018
I was the one who got mom diagnosed because her husband would not take her to the doctor. When I found out she was getting lost going to the doctor, I insisted he drive her there. When mom's teeth were turning brown, I was the one who called the dentist, not the husband. He didn't lift a finger. When mom came crying to me in pain for other things, I insisted he take her to urgent care. Mom would constantly call me because he wasn't around, wondering where he was, and got lost in the casino because he was still taking her, using her money to gamble, even though he has plenty of money of his own, and she didn't even know where she was. By the way, the money he has, is not due to him working for it, he inherited it from his son's estate, who passed away many years ago. Before that, he was on social security.
I have read on this site, that home is the best place to be for those with dementia. Is it still the best place when the spouse is not caring for him/her? The husband is home a lot because he is recluse, but he does leave her alone to go to bowling once a week, get the car fixed, and anything outside of the house that needs to be done. He left mom alone at home a few years ago (she still was far in dementia) for two weeks and had sent mom to the airport by herself in a shuttle to see my brother (my brother is the one who helped her buy the plane ticket online). Thankfully my brother finally saw what I see and got a ticket to come back with her and spend the two weeks with her. He saw she didn't know who he was, her husband was and didn't know where she was or where she lived, etc. He leaves mom to get food. If it's waffles or ice cream, he doesn't care. He does not do the hygeine for mom. I will keep in contact with the caregiver and make sure she knows to report to authorities if mom starts getting sores.

Countrymouse Feb 2018
Rose, I expect this will sound harsh to your ears, but the situation is your mother's own creation. She married the man who thinks pizza and dancing are plenty. She appointed your brother to act for her. She likes the food she likes and nobody cares enough about her health to challenge her on that, they only care enough to indulge her. But these are all things that are consequences of *her* choices. Wouldn't you have more peace of mind if you gave more weight to what she wanted and less to some elusive ideal of good care?

You've done the right thing and reported your concerns. Keep doing that, and keep venting here, but maybe dial back on conflicts with your brother that just upset you and never change his mind.

Roseformom Feb 2018
Sorry to hear lclantontx2. It's extremely frustrating when you have a sibling that does not agree your parent needs the care they deserve.

Roseformom Feb 2018
Yes, the night caregiver can give her meds too.

Roseformom Feb 2018
My brother has used the money for two caregivers when she got out of the hospital since last summer 2017, but now he wants just the night caregiver because he says he wants to save money so she can live in her home longer. But, she has over $6000 a month which is still enough for the two caregivers (one during day for 4 hrs, and one at night, 8 hrs). You're right, it does not make sense that he would cut the daytime caregiver. I don't get it either. It seems there is something fishy going on. I have access to my mom's banking account, so I'm going to check it out on Monday. If it is more than $6500/mo. for 12 hrs./day care, husband will not put in one penny even though he is a millionaire. The reason why we need the night time caregiver is because her husband will not wake up to help my mom in the restroom. My mom had to take care of him, but when it's her turn, he refuses the same. My brother doesn't have the 8 hr. caregiver coming until 10pm, so my mom is going to be up pretty late getting bathed, but at least she'll be bathed, you're right. If I find out he is still leaving her alone during the day, I'll just keep calling authorities. She'll just deteriorate faster. My brother claims to love my mom, but his actions are showing different. He always had closer relationships with his friends than our family.

lclantontx2 Feb 2018
I feel like you just described my situation exactly except in my case there is no husband and I am poa instead of my brother and my mom has no money. I am still getting no where and state wont help. Someone suggested i refuse to be poa and this would force the state and aps to step in. My brother also refuses to see she needs 24 hr care

Eyerishlass Feb 2018
Your brother, who is POA, will not agree to more caregivers because that money is earmarked for your mom's care? That barely makes sense.

I'm assuming your brother knows everything you've told us? Neglectful husband, no bathing, no oral hygiene, being left alone, etc?

What kind of care does your brother expect she'll need before he pries open the checkbook? She's already being neglected from lack of care. is he waiting for bed sores that will get infected? Not having a shower for 6 months? Have you asked him at what point will he agree for caregivers to take care of his mom?

As far as the overnight caregiver goes is he agreeing to that because it's cheaper? If you can't reason with your brother and he continues to insist on a night caregiver only take advantage of that and have the overnight caregiver give your mom a shower. I know her meds probably have to be taken at a certain time but instruct the overnight caregiver to do as much as she can for your mom overnight. It's not ideal and will most likely mess up your mom's schedule which will irritate her dementia but at least your mom will be clean.

See how this works and continue to harass your brother about more care. Don't give up. Email him. Text him. Talk to him. He's being ridiculous.

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