I have read about how bad this is. And against the law. But I'm upstairs with her down the hall. I just started locking her in. A slide lock from the outside on top. She doesn't know it's there. From 12 to 8 . This is nessasary because My mom may fall down our stairs is a big concern its 16 steps. And she will go in the kitchen try to cook and turn on the gas. She cuts the gas on all the time. Gas fumes all over. We took knobs off and she will still turn them on especially in the winter to keep warm. She takes good roast out and steaks any food she sees in freezer she will try to cook. My son came in the kitchen the smoke alarm went off she was sitting at the table with smoke all around while some food she put in the oven was burning. She is up at night will go downstairs looking for food 2:00 in the morning. Take food out leave it on table mix strange things together. I'm tired of not sleeping and worries about gas blowing up and her safety. When I do sleep I'm exhausted I may not hear her or know what she is doing. AND also her urine incontinence is awful all over the house. Nothing I can do she hates adult pull ups. She won't listen to me. I take care of my mom by myself. No help. My son is off on Tues and watches her sometimes a couple of hours while I run errands. She does everything she pulls off all her covers on her bed to the mattress everyday. I cannot understand why. Her mind is so bad and I can hardly handle her. My family does not like convelasant homes I can't put her there. When she is trying to open the door about 2:30 in the morning it unnerves me. It's a nitemare. But after a few minutes she goes back to bed. What else can I do???? Even my aunt who is her sister and a nurse told me for her safety and mine lock her in till morning. Yes it's drastic but I have peace of mind for a little while. All of this is slowly killing me. Sometimes I think I could die from so much stress.
From all you describe, you haven't got much of a choice.
Your mother AND you, need to have her placed in a memory care facility.
Contact senior social services in your area, or if a need for her to be hospitalized arises, tell them you can no longer care for her, and you will not be taking her home.
She will be safer and happier. You will be safer and happier.
There is no shame in knowing you have hit your ceiling and simply cannot be a caregiver!
You will not be deserting her, or dumping her on someone else....you will be choosing to do what is best for her. You wouldn't perform a surgical procedure on her, knowing you're not qualified.
This is not failure on your part; this is you doing what is the right thing FOR your mom.
Have the professionals care for her...THAT is what the right thing, in this case, looks like.
You can then return to being her daughter. You can oversee her care from a far better vantage point than from where you're at now.
It sounds like you need to get her in a nursing home. If your family does not like it--too bad..then let them care for her, and I would tell them so. Her safety is the main concern. Those stairs are completely unacceptable, because even with the best precautions, accidents do happen. They become obsessed with locks and will find a way out. What is going to stop her from escaping out of the window? You can't leave her by herself, and you cannot lock her in her room. She requires 24 hour supervision. Call the county about elder services to get placement started if you won't do the hospital placement thing.
My mom used to do the same thing, but I have a single story home, got alarms when she gets up including fall mats (most falls happen getting out of bed), and every single electrical appliance got disabled; even the stove unplugged. I stay with her 24-7. FIVE YEARS later..she recently became bed ridden, is kept alive with a feeding tube. I'm so used to the caregiver role I do not know or understand how to live my own life without it being centered around mom, so when she dies I will truly be a basket case and emotionally destroyed. You see mom had symptomatic Alzheimer's for 10 years now. The last five years, she started acting like you are describing (wandering and trying to escape the house). Just a few weeks ago she completely stopped eating and drinking so I got a feeding tube put in..and she forgot how to get up and now she is bedridden. But she will be 90 years old next week.
I do not regret taking care of mom, but I literally sacrificed my life for her. So please do not lock her in her room.
We have my MIL (94) that wanders at night, and fell down the stairs, but luckily we only have 4 of them, and she fell on the last one, so she wasn't hurt, but after that we put up a baby gate so that she can't get to the stairs, but can still get around and go to the loo etc, it has really worked so well for us and she has no idea know how easy it is to open. Are you not able to put up something like this, or even a full size gate, to allow her some freedom, but prevent her from accessing the stairs?
You mentioned that your family doesn’t believe in nursing homes, what are your thoughts on them? It seems that you are the one caring for her and it’s led you to locking her in her room at night. It maybe a temporary one, but for her sake, it shouldn’t be a permanent one.
When we are caring for a loved one with dementia, they need 24 hour care for their safety. If she is hungry or needs to go to the restroom, there needs to be someone to readily assist her. I fear her being locked in her room could lead to trauma for the both of you.
Consider hiring or asking your family to cover the night shift so that you may rest. You can’t take care of others unless you are taking care of yourself first.
Whenever a loved one is moved to a nursing home, it is wise to plan daily visits from friends and family and even consider to hire someone to come by for visits regularly. I have found that this makes staff stay on top of things. Also, having a daily journal available for to write down any concerns they may have regarding her care. When you come to see her, you will know if there are any issues that need to be addressed.
We have to think what is best for your mom. Family will not always agree. If you have the legal control over your mom’s care, then you give her the best care possible, whether it’s in the home or a nursing facility.
Where are they when you need help?
Tell them to mind their own business and place your mom for her safety and yours.
Find a place and take her without telling anyone, if they say anything ask them where were you when I needed help.
Contact DHS about help with finances and placement. There should be no guilt on your part, you have to do this for your mother’s safety.
Best of luck
If you cannot place her in a nursing home, I would recommend using gates, baby monitors and back zip pajamas. All of these can be found for purchase online. I also recommend hiring someone to give you some respite if you can afford it. If not, call on your family members to take their turn.
I wish you the best!
Even if you dislike nursing homes, you have zero choice,based on what you wrote she legally needs to be placed inside a Nursing home STAT.....you're dedication is remarkable, yet she's going to kill someone.
For assistance you can reach out to case management and social services department in a hospital for information to provide guidance and support for you. In addition you may need your Mother’s doctor to assess and evaluate her to qualify for memory care.
Hope this is helpful.
Since 2013 it has been better since have learned that the mind is in chaos, have learned the behavior triggers and found the right medication to reduce the chaos.
We have realized over the years that the strange behaviors are because the mind remembers fragments of things that need to be done, but also only fragments of how to do it.
My wife has FTD with all variants.
All dementias are not the same.
It seems that much of the medical industry does not yet differentiate.
It took 9 years for the FTD realization, and that was only by a chance phone call to a social worker who's husband had FTD.
FTD does not respond to meds and Alzheimer's cause adverse effects.
Sleep aid medication has no affect.
Christy is permanently hunched over and drools from Alzheimer's meds administered before FTD was realized.
Three main clinical variants are recognized: Behavioral variant (bv-FTD), Semantic dementia (SD), and Progressive nonfluent aphasia (PNFA).
https://www.nia.nih.gov/health/types-frontotemporal-disorders
I am typing this at 3:30 AM because I was just up with Christy as usual. She wets the bed at least once most nights, sometimes more often. Often the wetting triggers seizures.
There is no Rx for FTD seizures, but we found natural medication that stops the seizures instantly and affords a nice sleep for the rest of the night.
Christy used to sleep an hour, then be awake and active for 2 hours.
We use the same medication before bed when she is irritable.
Now she sleeps until she has to pee, usually 5 hours, and then right back to sleep with a pleasant wake up.
I enjoy my mornings with her.
UTI is a major cause of irrational behavior.
We do not use depends because it causes UTI. This is known. Our local university hospital does not allow them for that reason.
Much bedding is Polyester or blends. Polyester is a plastic, holds the moisture and bacteria, and is an irritant. Good hotels use ony 100% cotton bedding.
We use 4 x 4 washable bed pads with a 100% cotton cover. We have cut king sheets in quarters. It is easy to get her up, spray her underside in the shower, and replace the 4 x 4.
The 4 x 4 pads are an easier load than full sheets. I would do that a thousand times rather than one UTI episode.
Christy has no language comprehension or self awareness, She is a danger to herself and others and she is hyperactive. She has to be watched by a person within reach 24/7. She wanders without purpose. She would bump into walls if not redirected. Restraint enrages her and it is unlawful. We very gently redirect her from dangers.
We sit her down sometimes to feed her or when she is obviously tired, and let her choose when to stand. It is only moments of relief for us.
We are able to leave her space for the moment, but she will suddenly pop up and one of us will exclaim, "and she's up!"
Often it is because she has to toilet or has already done so.
She sits on the 4 x 4 with cotton cover. No depends.
I have realized that it is easier to grab the pads and throw in the washer than to struggle with removing and replacing a diaper. Better for the environment, also.
We toilet her every 2 hours, which minimizes accidents on the floor.
Facilities do the same.
Christy has to be hand fed and hydrated with a bakery syringe continuously all day, and often it is while she is shuffling, twisting turning, head hanging, drooling.
I used to dread her wake up, now I look forward to it.
With the medication, even in her emptiness, she can be a hoot and we laugh much.
It is like watching a toddler learn, only she can't retain after the moment.
She not changed since 2013 and is physically very healthy.
I have been providing this level of care 24/7 since 2013
Christy is exhausting and each night I wonder if I will have the will and strength to do it the next day.
But each morning I find myself realizing that I can do this for another lifetime.
You are an awesome individual and what a great answer you have given. For all of us answer I’m sure MissingEverything will draw some hope and actionable steps.
Blessings to you sir!!!
So sorry for your situation but, you must place your dear Mom in a memory care facility.
Dont worry about naysayers telling how bad these places are because they are so regulated by the states they have to be cautious. You can visit her everyday for as long as you desire then go home to peace of mind. Make friends with staff and they will keep and eye out for you.
You will land in a facility if you don’t place her in one. You are her main caregiver so you have rights too. These facilities are improving their care because so many people are needing them and will need them so competition to improve.
Locking the door yes is illegal most everywhere from what I’ve read but try like someone said the AARP site.
Go to the local library if you don’t have a computer.
Research, research to find what you need.
Nothing lasts forever.
Its been seven long years.
You have paid your dues and can still be very active and helpful with more ways than you can imagine if your sanity in tact when she is in a memory care facility. It’s the loving thing to do. Prayers for you now, and many blessings to come.