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.
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.
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.
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!,
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.
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.