Why does Mom think she can live by herself when she can't manage her underwear?

Each person is unique in the process of dementia. As the daughter of a mom with dementia and a Social Worker this has been an extremely difficult journey. So sad. There is no one recipe. For us, my mom still lives alone but has someone in to help from 9-5 daily. Weekends she is with me, she is a easy going woman but still this is very difficult. We are trying to preserve her independence and dignity.
The question I keep in mind is safety and quality of life. Last year she fell 2x's when a caregiver was with her. This year she had no falls at all and enjoys walking her dogs etc...
She baths, dresses etc.... all herself. She cries as it isn't as easy as it once way but when she is confused she knows to call me and talks about it. I don't want to go to 24/7 yet. It would destroy her emotionally and it becomes a question of quality of life. As of today her quality is good considering she has dementia.
I think people have to be careful not to box individuals with dementia into a category and put them away to be totally safe. Then medicated them etc.....
Nothing is every 100% safe. We do our best and take it one step, one day, one minute at a time.

Have you ever tried to explain why a 2 yr old can't have or do something? right. that works out well. Basically the same thing. Stage 6 is beyond independent living.

At this point YOU need to take the lead and make the decisions. She cannot.

Dementia patients think all kinds of things that are not true. The truth does not matter. YOU are responsible for making sure she is somewhere safe. Somewhere she can be fed, bathed, clothed, and interacted with. This may not be possible at home. Sometimes staying at home is worse for them than being in a nursing home or dementia care place. It is not easy to dementia-proof someone's home.

My mother is in a secure dementia unit now. She is immobile and has low scores on cognitive evaluations. According to her, sometimes she is age 3 and her grandfather is paying for her to be in "this great big house". Sometimes she is aware of the present time. Other times she sees dogs & cats running around that aren't there. The truth does not matter.

What matters is that she is calm, protected, and her finances are safely handled.

It is not you who forced her to leave her home. It is the disease. Horrific disease.

Not one of will like to lose our independence! We don't want to be someone's burden, but we fail to realize that our loved ones gladly perform this duty for us, e.g. roles reverse!

Sheryl your Mom is unique try and live in the moment and not anticipate problems that may never arrive. Enjoy her as she is today and build memories on that. of course plan for the future and decide how you will handle all the "what ifs" maybe even write a list and explore the options if she enters a certain stage. you can visit ALs and NHs and make a calm assessment then file it away so you don't have to make difficult decisions in the heat of the moment. Find the cost of everything because this always comes down to money and see what Mom could afford. You can even write out a plan 'budget" for mom's future care and update it on a regular basis. By that I mean if you have chosen a particular
NH and it is beautiful and locally owned but suddenly becomes part of a national chain check it out again to make sure the previous standards are maintained. Take photographs and start a folder and unless there is a sudden change in Mom's health and needs don't worry about it for another six months. It is being faced with decisions in the heat of the moment and being pressured that leads to things you may later regret. make sure you know what mom's wishes are and what you personally can cope with. yes you may have to do the "dirty work" yourself but having the right "equipment" will make it so much easier.

SD....thank you so much for sharing your story. I seem to almost be obsessed with wondering how much time is left before she forgets who people are...or becomes incoherent...etc,etc. I know there is no point to thinking about that but i cant seem to stop. She is my responsibility since my oldest sister passed and my other sister has had 2 strokes and has cancer. I know that it will be me to force her to leave her home.

Sdbike, wow, thanks for sharing your journey with your mom. My mom hasn't been diagnosed with any memory loss, but some.of the earlier signs you write about seem.similar. I am considering having my mom evaluated. She is almost in need of ALF.

I have to agree with SD on the progression - I have posted before on this - only one thing is certain... the disease will progress... how and when are individual and not predictable. You cannot say in two years this will be the situation. It will depend on the individual, the type of dementia (s), other underlying health problems, their social environment, the support they get from within and outside the family and the anxiety they experience as well as all the other things like age, gender, lifestyle present and past, nutrition, exercise. My mum seems to go in stages huuuuuuuuge drop plateaus out, progresses a tiny bit then another huuge drop. My friends mum wason a steady decline but then has for the last 3 years plateaued. Sorry if thats not what you want to hear but it is the darned reality of this hideous hideous disease that takes and takes and gives so little in return

To SherylBeth: In answer to your question about the time between short term memory loss and where my mom is now, the answer is, there really is no answer. It is so gradual, you cannot pinpoint any one day, month or year. I will tell you how it progressed as best I can.
I would say between 2007 and 2010 her memory started to go. She was 80 in 2007. She still could manage things and talk coherently. She still lived in her beloved house by herself. I used to live in CA and when I would come visit I would notice that things around the house were not so organized anymore. I had her gardener mention to me that she was not writing her checks to him on the lines and was very sloppy with some dates incorrect. She would ask me where things were and I told her. I mentioned to her that she might be starting to get dementia and she agreed with me and then changed the subject. She also has macular degeneration, so that contributed to the handwriting mistakes and un-organization. When I would fly home to CA I would always get a call asking me where such and such was and I told her where. She would say I was wrong and I asked her to stay on the phone with me and go look where I said. One time when she found what she was looking for in the place I told her, she said "I hate it when you are right". I loved that moment.
I took her on a trip to Raleigh, NC in mid 2010 to look at assisted living arrangements to be near my sister. We stayed in separate motel rooms and while getting reading in her motel room to go out in the morning, I noticed that she placed her shoes on the wrong foot and her blouse was not buttoned properly etc. And more stuff like that. I knew the time was getting near where she had to be looked after.
Anyway, by December of 2010 she had fallen a couple of times and I had noticed she had left things on, like the iron or stove when I was there and I said that she needed some help. She finally relented and we got some caregivers to come in for 4 hours a day to help her. Instead she took them to lunch and basically entertained them. After a few more falls during the next 3 to 4 months, I put my foot down and told her we were moving her to assisted living. We found an excellent one nearby her house, but it was not a memory care facility. At that time she could have used one, but we were accepted thankfully.
The day we moved her, her legs just stopped working. It was psychosomatic, but nevertheless, the trauma of leaving her home and going to assisted living had an effect on her. She also had visions of people in her kitchen that morning and was able to tell me in great detail how many there were and what they said. It was very sad. That was the first of many more times she encountered hallucinations.
Once she was in assisted living things went downhill fairly quickly. She started to accuse the nurses of stealing things and she hit them. Within a year we were asked to move to a dementia care facility where she would have better care. We found a great skilled nursing center nearby that specialized in memory care and within a few months she was in a wheelchair fulltime. Her legs had started working again, soon after she moved into the first assisted living facility, but she had to use a walker. Her answers to questions were incomplete or sometimes totally off subject. We got used to that.
So it was in 2011 that her memory really started to go. She could still have conversations with me, but they weren't as coherent. But at least she recognized me by voice. Her ability to eat by herself diminished pretty quickly from 2010 to basically using her hands by mid 2011. In 2013 we moved her again to live closer to me, and for financial purposes, but to another assisted living facility with a dementia wing. With each move, there is a bit of trauma and increased disease progression as they are taken out of familiar surroundings and familiar voices and routines. This was in late 2013
Her short term memory was completely gone by then, but she still recognized names from the past, and knew words to songs, and could do multiplication tables as math was her forte. She would garble her words and I would tell her she was creating a new dictionary, or asked her if she had one too many gin and tonics already in the morning. We laughed endlessly at that.
Today, she is yet in another facility, (we had good reason to move her again and I will leave it at that) and being well taken care of. She kind of knows who I am, but not really. If I mention a relative whom she was really fond of from years and years ago, I see a glimmer of remembrance in her eyes and she will perk up. I also take her outside some days and just play big band music from the 40's on Pandora for her and she loves that.
The key to this all is to accept the situation and learn how to communicate effectively so as not to antagonize them or make them sad. Know how to redirect conversations to get them in a better place. I have to tell white lies most of the time, but I know the minute I leave, she has forgotten about it, so it does not bother me so much any more. The most cherished things she still has memory of, at least in concept. One day, nothing will come out of her mouth and that will be a very sad day. For now, I enjoy what little I can and try to make her laugh and it usually works. I will tell you that the best thing is consistency of environment and people and finding the right combination of meds for them. That should prolong the short term memory somewhat, but as I have learned, each person is different and there is no way to predict anything. NO WAY, no matter what doctors or experts tell you. Your loved one could go downhill in an instant or stay the same for years. There is no rhyme or reason to this disease, except that one day it will take your loved one from you and leave them a shell of themselves. Please try to make the most of it while they are still able to talk with you and create new memories for yourself you can cherish. Hope that helps.

I tack up notes for her to remember certain things (since she is in her own apartment with a PT caregiver) and even that is a challenge because she'll want to tuck the note somewhere in front of her (never to be seen again). There is no guarantee she'll even read the note, but I'm trying as she wants to "stay independent". *rolling eyes*

I think that has always been the hardest part. Mom has always had physical limitations, but sharp as a tack. Now to see her so frustrated by the smallest things she can't remember. We try not to correct her because it serves no purpose, she is not going to remember. Little things she will keep asking during the day we right down on a legal pad beside her chair. Often you will see her holding it like it is gold.

I think I can sense frustration, exasperation, maybe even a bit of hysteria in the question; and I know those feelings. It's not that people with dementia lack logic or lose the power of reason, we get used to that quite quickly - it's when they come up with these things that are almost AntiLogic: "I cannot lift this fork to eat my supper but on Sunday I made all the children a roast." Er, no you didn't. Oh okay, if you say so, yes you did - just let me help you with your food now, please, I beg you….

A form of confabulation added in, I suppose. We all need to make sense of our worlds, and when your world is bent out of shape so will your methods for making sense of it be.

Sorry but it is not a question of why she thinks these things. Her thinking is not normal. We go over this every day with my mom about why she is living with my husband and myself. It is one of the things you have to realize, you can't reason with her anymore.

Debi 13th
Thanks for your answer! It makes sense! Mom has dementia - Good days and bad days! She still fusses because I sold her car to help pay for caregivers and keep her from driving! I've quit arguing with her about skipping medicine doses! She'll say she didn't need it that day! It's so frustrating to me though that I often leave in tears!

My mother has dementia and asked me today (for the umpteenth time) why she needs her caregiver (it would be a load off of me if she were in Assisted Living but wants to stay in her home). I answered that she needed her for everything and she accepted that. She forgets all the time and yes, it is aggravating but is understandable and she isn't ugly about it. You pretty much have "to go with the flow" and do what you think is best.

What does her doctor say about her competency? Sounds like she is not competent to be making complex decisions such as living alone. Does she have a power of attorney for medical and financial? Call your local chapter of the Alzheimer's Association, they can give you information on how to deal with some of the behaviors she is exhibiting. There are times when a demented person makes perfect sense, but is really unable to comprehend complex issues. I've seen it in my work as well as in family members. Don't argue with her, you learn by trial and error & never give up is the best advise I can give you. I know it's difficult but you must be the adult since she is unable. Look for a caregiver support group, call your local area agency on aging. They also have a lot of information that can be of use to you in caring for your mom.

My mother has been in a NH nearby for two and a half years and has spent every minute of that time sitting in her room, refusing to have anything to do with residents or activities, just plotting her escape back to her former home, being totally hateful and demanding. She's had parkinsons for 15 years, numerous strokes, hip fractures and increasing dementia for a very long time.

I don't know what stage she's at now, but she's skin and bone, eats next to nothing and is pretty much bed ridden. As she's so very weak the tantrums have recently stopped. When I visited yesterday she looked like she was coming to the end of her time. We've never been close, not even friends really, and I don't know what I feel ... just sort of going day to day in a vacuum/no mans land waiting for the other shoe to drop.

My eldest cat is 16+. I've been nursing him along for some time. He's in no pain but he can't go any further so this afternoon he will slip quietly across the Rainbow Bridge. Sometimes I think we're kinder to animals than we are to people.

I had this very question a few years ago about my Mother. She thought she could take care of herself, drive, etc. Here is the explanation I got from ALZ association: Think of your brain as a four drawer file cabinet - the bottom drawer is your memory 0 - 18, the next drawer is 19 to 30, the next is 31 - 50 or so and the top drawer is 51 to the present. As the file cabinet fills up each drawer is filled accordingly until the top drawer starts to overfill. What happens when your cabinet is overfilling? You start to pile your files on top of the cabinet - when the piles get to tall (beginning of ALZ/dementia) the files begin to fall behind the cabinet. You can no longer access the files and those memories are lost. As ALZ/dementia progress, the files in the lower drawers "lock" and you cannot access those memories. The last drawer contains the youngest years of life - what happens in those younger years? You can get your Drivers License, date, take care of yourself, be independent. How did you feel at that age? You had the world by the tail and you could do anything! This explained where Mother was at in her "file cabinet" and why she thought she could do anything. She was VERY upset when we had to tell her no, she could not have the car keys, she could not take her herself anywhere or travel alone.
I don't know if this analogy helps but, it sure did make the "light bulb" go on in our heads and explain alot! Best wishes on your journey.

Bless your heart! Know what you're going through! My mom is 89, has dementia and under hospice care for mantle cell lymphoma! She wants to stay in her home but won't stay at night by herself so I pay someone to stay at night! Brought her to our house several times and all I hear is I want to go home! For now she's still there but keeps me concerned about her constantly! I decided if she's happy there with my help to see after her I'll leave her there as
long as possible!
However, you have no choice with your mom! You're in my thoughts and prayers! People who haven't gone through this have no idea how difficult it is!

There is not going to be a sane response when a person is so ill. Stop trying to get one. It is a waste of time.

Answer=because most, if not all, elders do not want to lose their independence! They dig their heels in to resist moving! And who can blame them really? Who loves change?

SDbike is exactly right. That is how it starts, memory problems, progressing to incontinence etc and despite how they may respond to you (they often SEEM rational - but they are not) - you cannot reason with a late stage dementia patient. That means you must make the hard decisions for them, whether they like it or not. They are no longer capable although they think they are and will argue the devil into his grave about it. I always thought Stage 6 was the last stage before death, but your description of your mother's behavior is exactly like my mother's and she is going strong, physically. We moved her to AL (1 year later than we should have) She has no short term memory, but she can take care of her basic needs still. Yet she is incontinent (but denied it until we had to replace her underwear constantly as she was throwing the dirty away). She has obsessions, won't listen to reason, does weird things and still insists she can manage her own apartment. (She was burning pots in IL, often confused, accused the housekeeper of stealing, missed meals, clothes filthy, etc) It sounds like your mother needs assisted living now because the worse they get, the harder it is for them to adjust. Another thing, she probably needs medication and AL will make sure she gets it and takes it. She will eventually end up in memory care and its easier to transition from AL. I know it makes you feel bad to put her there because she doesn't want it, but it is best for her, and best for you.

Sdbike...do you mind me asking how many years it was between just short term memory loss and where she is now?

I read an awesome article on this site concerning validation therapy. Basically, the caregiver agrees with everything the person says and then does what is necessary to keep their loved one safe and happy. After several weeks of absolute hell with my Dad, this article was a Godsend! Just agreeing and discussing how unjust things are, really helped my Dad calm down. Don't get me wrong, he still needs meds to be calm, but the conversation surrounding the particular issue helps him vent the frustration. This gives him an outlet to say what is bothering him. This works mainly because he is at the stage where his memory is quite faulty. I just go on and do what is necessary for his care. It does help to be cheery & smile, even when you don't feel like it! It actually helps ME feel better.

This is a very difficult and frustrating stage for the person with dementia and the family. At first it is manageable, because although they forget somewhat, they at least understand the explanations and live with it. There are very few people that welcome being taken care of 24/7 after having independence for all of their lives, so that is understandable. As I say, this stage is the most difficult. They can be combative and stubborn and nasty. As some others have suggested, have a doctor prescribe some meds that will calm her down. You don't want her "out of it" completely, but enough so that she is manageable by the staff who must take care of her. And for you, the family member, you need to accept, accept, accept. Whether you just want to educate yourself on what is, or pray about it, or seek a support group, you need to let go. I have my mother in a dementia wing of an assisted living facility. She is 100% incontinent, in a wheelchair full time and sometimes speaks and sometimes just sits there. But it has been 6 years of getting used to the idea of how this disease works, that there is no rhyme or reason to a person's mood from one day to the next, and that eventually, they will lose that part of themselves that cares enough to complain in the manner you are referring to. It takes time, patience and understanding. Good luck with it

I learned long ago when taking care of my mom that made it very difficult to live on her own but did until she passed away, that WE, the children or loved ones caring for them, have to become the PARENT and they are the child. WE have to make decisions for them that they are not able to make on their own. If we can look at them as a child, but not treat them as such, aim to keep them safe and secure as best we can, then these decisions are easier. We would not let a child drive a car. We would not let a child fall without protection. We would not let a child cook, we would not let a child wet their pants without protection, we would not let a child have sores unattended, we would not let a child make major decisions. We would not let a child.........fill in the blanks. The cycle goes around and they revert back to being a child. Keeps it all in better perspective.

Such a shame our parents have to live out their lives this way. My nephew lived with my Mom. He is still at the house and came here after an appt. He told me later that Mom asked if he was taking her home. She was packing up. He told her she was living here now.

IF she is in Stage 6, she is waaay beyond where she should be by herself. I pray she doesn't burn the place down, injure herself or others. I agree that her brain is broken and it's like trying to explain to a 2 or 3 year old....can't be done. You are her advocate now and time is of the most important. She needs your help in finding a place that she will be safe and be with others that didn't think they needed help either....my mom being one of them. She wouldn't take any medication because she DIDN'T need them.....yeah, she did so we sneaked them into her coffee which she immediately tasted. That didn't work so when her temper got the best of her it was time that we found a place. She fought it like mad at first and I didn't visit for 3 or 4 weeks (per their instructions) so she could get acclimated. She did and that place became the norm with her 3 best friends. They would all pace together. Seriously, if a dr. has told you she is stage 6 you should get her help immediately. Going through depends or being incontinent is not the big issue here. Just went back and reread your question so she is in facility. So my above story might not help. You need to sit down with Director of Nursing or the Doctor that is in charge of facility and look into different meds that can calm. Good Luck and God Bless

My 83 year old mom refused to believe she could not take care of herself. Her doctor in front of all the kids explained that she was in danger to herself doing it. It did not help. After getting really sick and in and out of the hospital I got guardianship over her. She is in assisted living now and still some days wants to go home. She can hardly use the phone or TV remote. I am afraid it's just the process of dementia. I try not to worry about it because that will not fix it.