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House, kitchen, garden, mall, doctors office, park, she will open any door, anywhere, anytime, in any attire. She does not pace she trudges incessantly maniacally when she is alone in the garden or thinks no one is looking. She appears practically catatonic but if you watch her you see her wait until you turn away, leave for a second, leave the room, she observes if no one is paying attention to her no matter how many people are present, and quietly she creeps away. No matter how many times I tell her to sit, stay, don't move, don't touch the door handles (she's broken several incessantly jiggling or trying to open them) nothing makes any difference. She is completely incontinent, will not eat or drink without constant prompting, needs help doing every personal hygiene function, but still very mobile. Barely speaks. Doesn't say she needs the bathroom but will say "can I get up or I want to get out." How is it possible she can be so sneaky with her insane need to get out - it's been going on for years, yet has absolutely no cognitive skills left for anything else. She will get off the toilet still going, diapers around her knees shuffling out of the bathroom pants down while I am 2 feet away and will not stop with out physically stopping her. I have to grab her clothes because her skin is so tender she bruises or breaks with the slightest touch.


Today she was eating, threw up in her plate, continued chewing although I was shouting at her to spit it out and stop chewing. I ran out of the room to get something to clean up literally 2 minutes, she threw up again and got up and walked out of the kitchen door, in her pajamas, into a rain storm. She manages to walk so fast when she is alone but with me or anyone else walking she shuffles incredibly slowly. It is so aggravating. I do not have the patience to sit in the bathroom for 10 15 20 minutes. I am constantly trying to multi task but each time she gets up and will just walk out into the hallway, bedroom wherever. Sometimes she'll take off the diaper and put her clothes back on and either get back in bed or walk out the door - while I am 3 feet away!!! She does not care who is with her or what they are doing not even animals. The incessant need to "get out" has been torture for me for over 2 years. She has no concern for her safety or the weather. She cannot sit still except sometimes at night after dark eating in front of the TV - again with constant prompting to Eat.


The ONLY time she is quiet is in the car. She got out of the garden a few times or while I was emptying the car right after a shopping trip, she will get into the car. I am still not able to really accept what she has become and after years of cajoling, reasoning, shouting, begging, giving instructions this constant only thought to GET OUT is driving me crazy. It's bad enough the incontinence but it's never ending. Just when I think it's OK I can deal with it she does something so unbelievable I lose it!! I know it's going to get worse if she is bed ridden. She has no other health concerns. She only takes multi vitamins and folic acid. I've gotten her to eat more fruit and vegetables and a healthier diet than she ever ate in her life. But it's constant pushing. She would die in a nursing home. She wouldn't eat or drink and where would she be able to walk incessantly outside?!!! No matter how many times I take her to the bathroom there's always an accident. How can she not know she needs the bathroom but can still say I want to GET OUT?!!! Even when she's on the toilet!!! She is OUT all the time. She has no current memory whatsoever and barely remembers where she is from. No idea where she lived the last 5 years, previous 30 years, sometimes not even her parents names. Forget her grandchildren, siblings, cousins - but every once in a while we will call someone and her answer to How are you? Is either "fine" "miserable" or "I'm trying to get away" from where!!?!! This is her answer at her home, my home, everywhere.

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Horrified, to be upfront, I don't know anything about your Mother's type of condition. First thing came to my mind is, do you ever let her go outside, and if so, what or where dies she go? Did she enjoy the outside before this horrible disease? My dear Mother is 85, and she has always loved the outdoors, her plants, garden, sitting,,,,,, I can see her wanting the same thing. Would she maybe "go outside" & be happy pidding in pots of dirt, flowers, a small container w/water & beautiful stones,,,,,. Could you enclose a small area in your yard (if you have one), with a solid fence with these things, so she can 'wander around' in it? I'm just wondering what she would do, if she DID get outside. I'm so sorry your so stressed over this!!! Sorry, I'm not familiar about your Mom's condition, hope I'm not being out if line with my suggestions. Hope someone else can give you more help. God bless you and your Mother!!
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The question that jumped out of me is where would she walk and walk if she were in a nursing home?

In good dementia care settings, they have actually thought of this. Gardens and open air spaces are enclosed within the unit so that residents can walk around them safely without leaving the premises. So that's one quick answer to one minor point.

What you're going through is at the extreme end of challenging. Have you been to visit any dementia care facilities yourself, to get a feel for what the better ones are like nowadays? A lot of research has been done and applied in practice.
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Thank you everyone again. We’ve tried lawyers. Evidently stealing from your ill parents isn’t a crime. I now have POA. I had to bring her to live with me overseas to escape my threatening brother and get back to my job which I barely do anymore. I have 1 daughter who tells me the same thing just put her in a nursing home. I’m trying with another lawyer to somehow sell her home to get her some money for a decent care facility. At least get her into a nice place and later apply for Medicaid. My asshole brother filed tax returns in 2016, funneling the remains IRA funds through my parents bank account, making it look like she had 50,000$ in income. She didn’t even have her social security check. He stole everything. He was having Meals on Wheels deliver food to his million dollar house. So many other nefarious things. Like forcing my demented mother to be the primary care giver to my father dying of Parkinson’s. I’ll have to save enough money to get us plane tickets back to America and into the Medicaid process. I would happily sign the condo over to a nursing facility and let them deal with my scumbag brother but it’s probably not feasible. The only lawyers who seem at all concerned with this kind of criminal behavior are old & retired or ProBono who said get a litigator. It’s an awful plight for old people to be both unwell and financially duped especially by their own children
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So what country are you in at the moment?
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I can hear myself in your letter. I have been down your difficult road. First, I agree that you need to get her qualified for Medicare. That isn’t an easy task , as there are a lot of steps. But you need to do it. Contact your local Council on Aging and make an appointment to see how they can help you. Contacting an elder care attorney would also be a good idea to help with legal matters. If you don’t have Power of Attorney over your mother, he can help you do that ASAP.
While you are getting this all started, buy alarms that sound when outside doors are opened and/or put locks up where she can’t reach. Local sheriff departments often have a program for elderly that wander. They may even have an item for her to wear (it looks like jewelry to the patient) that can track them.
Now the really difficult advice... you have done a great job of caring for your mother. But she needs more than you can give. It is time for her to go on to the next stage of her life. As hard as it is, you MUST give yourself permission to place her in a memory care facility. If you don’t, I can tell you that continuing to give the level of care that is demanded of you now will cause you to develop physical health issues, mental and emotional health issues. You don’t mention if you have a husband or children, but this stress changes your intereactions with your loved ones too.
Once she qualifies for Medicare, you will be able to move her into a place that can meet her needs. No one ever WANTS to go to a facility, but her physical and mental needs now require it. Some have enclosed atriums where patients can be outside. You can continue to advocate for her and visit her. But you need to start living again too.
As I said, I hear the desperation in your voice and I recognize it because that was me. Please let go of the guilt. You know your mom, that she used to be, would never want this life you have right now. You CAN do this!,
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I think you need to see an attorney.

Your brother is over stepping his rights, he can buy the condo at fair market value and pay mom, or he can sell it. An attorney that is certified in elder law will be able to help you know your options.

I would talk to Medicaid and find out how to proceed. You may need to file charges against your brother, but he is putting your mother's safety at risk. I am seething at him right now. Sounds like he has financially exploited your mom.
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Thank you everyone who answered. I still cannot believe her desire to get out, which no matter the situation seems sneaky and purposeful. She will actually move furniture, luggage, objects blocking doors to get out. What’s the big hurry to get out of the shower or off the toilet and put the door!?!!?? Yes she needs a memory care facility but due to my brother stealing all of her resources, remortgaging her home twice, changing the Title Deed and clearly having legal advice a long time ago concerning Medicaid funding, her name still on her condo mortgage he refuses to sell and give her the money, we are hesitant to start the process. I’m alone in the process as my sisters are otherwise occupied although supportive and my mothers siblings are useless.
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I think that your only option at this point is getting your mom into a locked facility. I don't know if you have guardianship, if you do, you don't need to have your mom's consent or opinion. I don't know what your mom's financial picture is but if she needs Medicaid, start the process now. Her safety comes first and she needs professional care.
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Not much to say here. It is pretty sad, though. Hugs
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Sometimes, when I look at my husband, who is bed bound, lying there in his diaper laughing at endless 50 year old reruns of comedy shows that we have watched 400 times each, I wonder what I ever did to deserve this rotten life. I never cheated on him. I never abused our children or pets. I was unfailingly nice to his family who always brushed me off. I kept a good house and always had supper ready when he got home. You probably feel the same way, right?

The years of her decline that you spent cajoling, begging, arguing, etc. have led to your feelings of burnout now. “She will die in a nursing home.” Yes, she will, eventually. But there will be 3 shifts of caregivers around the clock to care for her. She will be in a locked unit where escape is impossible. She will be just as content walking up and down the hallway as she would be walking in your garden or house, and she would be a lot safer. She won’t realize where she’s walking. She’s beyond that.

You have become an angry, frustrated, worn out and stressed out daughter. You can’t feel good about yourself right now. If you were watching yourself through a window, what would you think. If your mom, in her prime, were standing next to you looking into that same window at the two of you, what would SHE think?

Go go see somebody. A therapist. A trusted friend. A clergy person. Your doctor. Talk to someone who can help you understand and explore all your options for mom’s continuing care. Here’s hoping you can find some peace, and Mom too.
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I wish I had a magic solution to make this all simple for you. Unfortunately, there is none. Everything you describe sounds like typical behavior for someone with advanced cognitive impairment. Seems like she is at the point of needing 24/7 one on one care and that is a huge undertaking. I can only suggest you get help, as much as possible and as soon as possible. In home care is not always the best solution. Consider all the options including inpatient care. Do what's best for your family. And yes, (hugs).
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In agreement here faeriefiles.
A thorough medical evaluation and 24/7 care, is vital. Behaviors such as this are consistant with cognitive decline. It's tough on us love ones, but our mother's quality of life, as much as can be, is necessary.
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Hugs!
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