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.
If there's a downstairs bedroom she could move to, that would prevent a catastrophic fall. And you might put child-safe covers over the stove knobs, and don't let her see how they work.
I'm sorry for your frustration... I know it's so hard. Good luck.
I notice that you are in Los Angeles. I normally live in Amsterdam but have been staying in LA to take care of my mom who is in LA. (Too long a story for this post). In early 2018, when my mother was in a rehabilitation center after surgery, it became clear that she could not go back and live in her apartment. Not even with the caregivers we hired to help. The director of the rehabilitation services at the rehabilitation facility gave me the name of a service that could help me find an appropriate solution for my mother. http://www.thepassarogroup.com/ I found that it really helped to have someone with experience to talk it through with.They helped us find a facility that met our needs. We placed her in a homey residential care facility (Raya’s Paradise) that is equipped to provide memory care and has an LVN on staff. They also have activities that engage her mind and the small social interactions with the other residents and the caregivers have been very positive. My mother’s GP set up home health services (paid for by Medicare) so she has an RN see her about once a week.
My mom’s situation is not really comparable to yours. Every situation is different. In fact the same person goes through different stages. My family has have gone through multiple solutions since 2011 to support our mother in her aging process. Each stage required looking freshly at multiple issues - medical, emotional, financial, and logistical. An factoring in family dynamics. What may have worked in one stage may not work in another. My mother, brothers and I often had to reevaluate preferences and strongly held opinions about what we would and wouldn’t do. I hope and believe that we now have a solution that will last her to the end. But for the first time I am now having to make medical decisions for my mom without her input so I can appreciate how complex it is when your loved one’s mental capacity has diminished to the point where you have the responsibility of making such critical choices for them. It is confusing and a heavy burden. I wish you strength, an open mind, and a support system for all you are facing.
Other options: adult day care program and sitter at night. My MIL has dementia and has a live-in caregiver in Hawaii. This works since she is loathe to leave Hawaii, we live in Florida and her other son's family lives in California.
If her mobility is not impaired, she probably goes shopping and to appointments with you. If her mobility is not the best, you might want respite sitters for your "around town errands."
If you go the sitter route, most want 8 hour shifts.
I agree with others, that the stress her care is causing you (and it surely would for me as well) is the most important reason to have her move out. You need to care for you now and make the decision best for your health and your mother's care.
My MIL had a friend who said "your parents took care of you until you were 18 years old: it's time for you to take care of your parents". First, this is a "crock". Taking care of a baby is easy compared to taking care of a grown up person with Alzheimer's. And in many cases, older sisters raise the younger ones, not the parents. I think of the crazy Duggar family. Their utter selfishness in putting their older children in unpaid servitude so that the parents can keep popping out children is sickening.
I think it is terrible that family members are adament about placement while allowing you to take full responsibility for your mom's care.
Good luck to you.
When my mom was living with me, we had to put a lock on the refrigerator door to keep her from getting up 'rearranging" all the contents, and partially eating bizarre combinations of food, and occasionally attempting to cook. I did find that it helped if I left her some snacks by her bedside, to eat when she woke up during the night.
I had a dog, that would wake me up if she was prowling about. That was a real blessing, and I have no idea how that dog knew that I needed to check on mom.
Anyway, let me recommend door alarms, bed alarms, and bells for her room, they are a better solution than locking her in her room. For your kitchen you can get locks for the cabinets and the refrigerator, and for the stove, you can cut the gas off at a switch that is under or behind most of them, or you can have one installed.
If other family want to tell you how to do this job, then they should pitch in and sit with her at night so you can sleep, or perhaps they would rather pay a in home care giver to take the night shift! If they fail to do that and you can't afford that kind of care (it's extremely expensive), then I suggest you ignore their input and do what is best for you and your circumstances. Putting her in a care facility where she is protected and you can visit often to oversee that she is cared for well, is probably going to be your best option. It will give you peace of mind and allow you to get back to being a daughter that delights in her regardless of her condition.
Finding a way to enjoy your last few years with your loved one is also important, and it will matter a lot more to you, than you realize when they are gone.
-MJC
If your family won't come sit with her overnight, they have no say. If you have reluctance to memory care facillities, visit some. I would find a place where residents are comfortable and safe, and they have many activities to pass the time. A place with common areas for waking hours is good. I would not choose a place, where residents are expected to stay in their room.
I agree with others here, it's time for a memory care home.
Remind the family its rather selfish to put their dislikes above your Moms safety and well being not to mention your peace of mind, own safety and well being!
If the memory care and home health options are totally out of the question I suggest letting Mom help in the kitchen during the day. Have her wash fruit and veggies, fold kitchen towels, sort different types of pasta, etc. Maybe if she is addressing the cooking during the day it will satisfy her need to cook at night.
Point is, she needs more help than you can give her now. Your safety is at risk, hers it at risk. Go look at some of the homes, check out the options. Maybe daytime adult daycare a few days a week so you can at least sleep during the day.
Take charge here and get your life back!
Obviously no one wants to go to a care facility but REALLY? Why does it all need to fall on one person? This is just plain nuts.
Reading posts like this makes me grateful for the "trip" I'm on with my dad.
I have no children...if I get diagnosed with Alzheimer's I will not go through this living hell. I'll be bailing out of here.
I hope you can let us know what your future plans are to protect your health, safety and sanity.
You say your family doesn't like convelasant homes but then they are never at the top of anybody's list to places they want to end up in either - if you haven't been to one recently then you don't know how good or bad they are - there has been much improvement in the last decades - many say they wouldn't put their mom in one but have never even visited one rather are going on the rumour of what someone saw 40 years ago when the attitude of the public was it was a warehouse for the elderly - FYI ... they are called nursing homes now a days so that's why I can guess how out of date your information is
It is past time for your mom to get professional help 24/7 - think what would happen to her if you either got very sick or died - that's where you are headed with all your stress & deep down in your heart of hearts you know it too - start taking the steps now before you get too sick to have any choice where she goes because when [not if] the crisis happens then your mom will go into the first place with a bed available & it might not be the best one around
My mom always said she didn't want to go to the 'Sunparlour Home' the one in her town but she ended up near me & it had a different name - she blossomed for a while & went to 10 activities a week excluding religious ones - she painted, did bingo & hugely enjoyed the chocolate bar that was a prize, she had her hair done on site, participated in sing-alongs and many other activities
It is time to look at what not only she wants but she needs because she is endangering others with her behavior & that can't continue - there are resources & agencies that will help you through this difficult time so make use of them because most are funded by your tax dollar so now is the time to make that investment work for you - good luck but never feel guilty about this as you are securing her safety & well-being
My cousin was visiting her aunt (from the other side of the family) at xxxxx retirement home and asked how she liked living there. The lady replied that she liked it very much, then went on to add how grateful she was that her family hadn't put her in xxxxxxx retirement home.😜
It is PAST time for your mom to be in a care facility. You are "abusing" her and yourself by not getting her to one IMMEDIATELY. What I mean by "abuse" is that she is obviously not safe in your home. It is like you have a huge lap pool at your house and you are allowing a two year old to be in the pool area without you watching. A facility has no pool. No stove she can reach in her declining years. Once again, for your sanity and her safety it is past time for you to move her to a place that is designed for her at her age. Would you allow a 7 year old to be at a collage dorm room for a week? Of course not. A facility will not lock your mom in. She will be allowed to roam the halls 24/7. The difference is they have 24 hour staff that is wide awake and getting paid to do their job of keeping your mom safe.
Be good to yourself AND your mom, it is time for her to be in a safer environment.
About your family and their comments about mom. Don't let their guilt and displaced feelings about their mom force you to make truly wrong decisions.
My suggestion is to copy this whole post with answers from others and be direct and say, "I am sorry you do not agree with my decision, and I can understand your discomfort about a change for Mom. This will fall on me, since I am the one who is with her the most, therefore, I am the one who understands her needs the most. If you are not sure about my decision, please come sleep at my home for ONE week and I will leave. After the week is up, I am positive that you will agree with me about this change."
Once last thing, although I am certain it has been mentioned in other posts, please bring in OUTSIDE nurses, social workers, etc. to have a meeting with your family. It sounds cruel, but when they hear the EXACT same thing from a professional, everyone listens more. Instead of being annoyed at this happening, be happy that they are listening to SOMEONE that there needs to be a change for mom.
Good luck to you and your mom.
-Get a plumber to look at your stove/wall connection to see if he can install some kind of cutoff toward back or side of your stove. Then even if she turns on a knob, no gas will escape.
-For doors that lead to exterior, a handyman may be able to install a lock type system up high on the door similar to those used in hotels. And, perhaps, a similar lock for your pantry door. A strap around the refrigerator could be used after kitchen closed down each evening.
When you say my family does not like facility care, do you mean a general consensus of your family including yourself? Or siblings/other relatives don't want you to put her in a facility. If it is other family members only, then it may be time to have a family meeting that includes a calendar of what days/nights each of them can cover. Let them know with notice of meeting that non-participation may result in you having to make a decision on your own regarding ongoing care because you can no longer do it on your own. Since it is not stated about her finances, you may also want to mention if these relatives cannot provide on-site care, paying for day or night care can be substituted and get payment in advance for their share of the day/night they would be responsible for.
Locking her in the room could prove disastrous if there was a fire. I'm quite surprised a nurse would tell you that since a nurse would be a required reporter to adult protective services if they came upon a situation like that in a home
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.
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!!!
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.
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.