Mom has dementia, her behaviors are wearing on me. How do I handle this?

Why did the strokes do other brain? It sounds as though she has some form of dementia brought on by the strokes probably vascular dementia probably vascular.
This of course has to be your decision, but this is something you can not control and it is destroying your family life so maybe the time is right to place her in memory care.
She is your mother and you love her but she can't be allowed to destry the lives of you and your family. You may have promised never to put her in a nursing home and that is fine but you did not know she would scream day and night so I feel you can be released from any guilt if it is necessary to place her

What were the effects of your mother's strokes, Kecalm? You say her health is okay, but what did the strokes do to her body? How long since she had them?

You are lucky that she only say or ask over and over.my mother screams for days sometimes non stop day and night. Health wise she is ok but befor she had 2 stroks. My husband and kids are so tired. That loud voice day and night some times for days .

One helpful tip I learned from a friend whose 98 year old Dad asked the same questions over and over again I'm know using with my 88 year old Dad who has dementia.

Since the person asking the question has no idea that they already asked you that question, getting agitated doesn't help, since they won't know what is agitating you and it won't stop their behavior anyway.

So I simply answer him with a different answer each time - I make sort of a game out of it. It's more for me and my sanity than for my Dad, but I realize that at some point I won't have him in my life anymore, and would relish any interaction or question from him again.

I just read the article called "Hard Stuff". She says that dementia is a dance. I think that is so true! Sometimes you lead, sometimes you follow and sometimes you just sway to the rhythm of dementia.

I think the thing with dealing with a loved one with dementia is to not allow it to become a personal battle. To not take it personally. It is a disease over which the sufferer has no control. It is not a contest between you and the afflicted person. If you can hang on to that, you will be able to deal with your loved one with kindness and humor...and love.

But, no matter what, caregivers need to take care of themselves and take regular breaks away from caregiving. And that means a real break...not five minutes or just a bathroom break...but a real break-- totally away-- like a day out with friends or time for dinner and a movie...something that really takes you away for a while and into a different environment. I believe this is vital. And helps to replenish your ability to love and nurture rather than to just provide care.

Holycow, the dept of aging in your county will give you some help here. I think there are some Adult Day Centers that offer a few hours of respite, a hotmeal and some interaction for a minimal fee. In Ireland they have an Adult Center that picks up seniors and gives them lunch and they have activities for 10 euros. My mom loved going, and she was the one who was refusing to go and threw a fit, but her doctor asked her to go once and let me have some time to go out for an hour or so, she agreed and really began to enjoy it, was looking to go there on the weekend.

ModestTruth mentioned using Adult Day Care to give you a break or give them a break. Can someone tell me if this is covered by Medicare? I have a feeling it is paid out of our pockets but thought I would ask. Also, can anyone give suggestions on how to make them go if they throw a fit and refuse?

Well said, Jinx.

Going back to the 'do sufferers ever understand their disease?" point - we're at the early stages (with a few mid-stage signs/moments), but I've been pleasantly surprised and impressed at how matter-of-fact my mother's being in discussions with her doctors and with me. I think Teepa mentions it, too: this point about explaining that what we're dealing with is brain function disease, which can affect absolutely ANY aspect of behaviour from thinking to memory to bodily functions and motor skills to personality, speech and language processing… you cannot expect any warning of what is going to go wrong next, and only a tiny element of a process like communication needs to go wrong for the whole system to collapse.

So far, when my mother is upset or confused about a given subject, or finds she can't do some everyday task like sitting down safely in an armchair, being reminded that her brain is mechanically going wrong actually reassures her. It's as though, to her, it's somehow morally ok to have something physically wrong with you, in a way that is not acceptable if your problem is mental or emotional.

I really hope the trend for changing titles from "Memory Clinic", e.g., to "Brain Function Clinic" will catch on - it's a matter of accuracy, not polite euphemism or mere fashion. Not that there aren't still things I dread, but I'll take every aid to perspective I can get.

J2, I think the answer to your question is NO. In the earliest stages a person may be able to grasp and hold onto the idea, but even then, most get defensive.

As JessieBelle says, you should never - except when you can't help yourself - tell her that there is anything wrong with her mind. Call it confusion, or a little problem with your memory. Minimize it. There is no point in BOTH of you being depressed! LOL.

One of the members uses the name NotHisFault. That's the thing to remember. They sure didn't choose to get this disease, and their weird unpleasant behavior is just because they are trying to survive. If you want to learn some ways to divert them, google Teepa Snow and watch some of her videos.

ejbunicorn caught some crap for her second response, but her first one was right on the money. This is the disease. The repetition will continue. The denial will continue. The disgusting habits will continue. It sucks. Come here and complain all you want.

But you can't really succeed or even survive as a caregiver if you keep wishing and expecting things to be different. This is what the job is. Try to adjust and accept. If you can't, then maybe you are not cut out to be a caregiver. There is no sin in that. We all have different abilities and breaking points. Some of us can be nurses. Some of us can repair cars or be stockbrokers or telemarketers. Lots of us here can be caregivers for a while, until our health and sanity is at risk.

If you can't accept this job and its crappy aspects, (or when you have reached your breaking point,) then don't keep beating your head against the wall. Get your loved one into an AL or NH and oversee their care and have pleasant loving visits. That is really a better solution for both of you.

J2, my mother goes back and forth. Sometimes she says something's wrong with her mind, but other times she says nothing's wrong. One thing I have learned, though, that I'd better not ever say something's wrong. That will make her mad for sure.

Do people with dementia ever accept the fact that they have the disease? My mother is 86 and has been told by her doctors that she has dementia, however, she thinks they are full of crap. She claims that they tell that to all older people. Her reasoning makes it hard to deal with her behaviors. Seems as if we argue more than communicate, although there is little to talk about since she doesn't want to do anything or go to daycare more than two days. I'm just curious if they ever accept their diagnosis.

I moved in with my mom to care for her around the clock. I went through the same repetitive questions as well. She would asked to go to the grocery, and said that her dogs were going to starve if they didn't get food, at least 100 times a day. She continued doing this for 2 months, then soon after the repetitive questions came the aggression and outburst, then several trips to the ER from falling... I also developed anxiety and depression while caring for her. I love her dearly but I felt helpless to her needs, so much that I had got to the point to where I could no longer care for her... She has been in a nursing home for 6 months now. I still have my moments of guilt, but it helps knowing that she is under professional care & all the nursing staff love her to pieces and call her Grandma :)... Wishing you the best!!

wow....do I ever get it. I have been sitting here nursing a tension headache all day. MIL lives with us full time. We have caregivers some days and she goes to adult day center twice a week til 2pm. But, this does not stop the changes in the behavior. Prior to the new year the hardest thing to deal with was her spitting and hacking every time she went in the bathroom. She is Chinese and apparently she is reliving the fun of spitting as she did when she was younger. It is a custom to prevent illness they say. Well, she has never been hospitalized and she is 91...perhaps there is some truth to it? Anyhow, I got a white noise machine and ear plugs for the night. She often thinks its morning at 3am and commences hacking and spitting for 15 minutes or more in the bathroom. Also before the new year, she started making sucking and clicking noises. Since the new year she has commenced sighing, groaning, moaning, uh huhing etc.....constantly. The only time she stops is when she sleeps. Even then, she sighs all night. LOUDLY.
I have been under a lot of stress. I am burned out and I have no place to go but, here. I love my husband. I feel foolish for now being able to deal with this. I am going to a therapist tomorrow. I just hate getting up and knowing that she will be here making noises all the way til 10pm every night. I know this is the place she should be....not a home. Although she does have the money. And, at some point one of us might have to go. I fear though that it will be me. My husband is afraid I will leave him. He is also mad because he doesn't understand my impatience all the time. He is at work. Its his mom. My mom died from cancer 10 months ago. I really have no idea what to do. I just cry. I am sad...I write. ...I walk when I can. I leave the house when there is another person here. But, I still can't watch television with my husband without the incessant smack, groan, moan...UGH. My head wants to explode writing this. We stay in a hotel one night a week without her. Our sister stays or our niece. But, it isn't enough of a compromise. We sold her house. When it closes should I suggest that we stay at a hotel another night? We considered renting me an apartment but, the SF BAY AREA IS RIDICULOUS.

Sometimes my patience is tried when my BF's mother asks what day it is at least 15 times an hour (one of her favorite questions). When she asks other questions repeatedly it seems she is often just trying to make conversation, so I'll try to come up with a different answer each time that makes her laugh. I have 2 dogs and often she will ask me how many dogs I have. I'll say 7 or 20 with a straight face and she realizes that I'm kidding and just seems happy to get a response and is amused by the ridiculous answers. Other times, she will repeatedly ask what my BF and I are going to do that day. I sense she does that when she feels anxious about us doing something without her. I might come up with a list of about 5-10 things (we are going roller skating, then we are going dancing, then we are going hunting, etc, etc.) then ask if she would like to join us. Again, she will laugh at the response and it seems to diffuse her anxiety. I can't say I always have the patience (or the ready quick responses), but this approach does seem to lighten the mood and help me keep my sanity.

Sounds like you and your mom are living in my house.....behaviors, hungry after throwing plates on the floor, but doesn't know how it got on the floor...But a change of medicine and omitting one has helped..hallucinations are not as aggressive are only outside and not in the house kicking her out of bed and chairs or urinating on her pants and floor. Take a deep breath and walk away move on to whatever comes next. It is frustrating.... my husband calls her wonder mom... wonder what she'll throw at us next... literally and behaviorally.

I do want you to know because you sound something like what I experienced before my mom and her dementia. My grandfather was dropped off at my house for three years. I had no room for him for one, i worked 40+ a week, raising 4 kids, and 2 foster children. I knew nothing about Alzheimers, except mainstream info, the don't remember. Ultimately what happened was he choked to death at my house. He was losing so much weight, and my thought was to give him extra calories, so I made him french toast sticks with tons of syrup. He choked on it that evening. My 16 year old son gave him the hymlic and saved his lived. The ambulance came but they didn't take him to the hospital, as my son had saved him, all his vitals were good. The next day a friend of mine wanted to come hang out at the house while I was at work, I let him but gave him strict instructions to feed gpa on every even hour , 12, 2.4, etc. I got a call from my son at work at 4:45, he was in hysterics, Mom, I think gpa is dead. He had choked, my friend (my ex) had made him a damn peanut butter sandwich. He didn't wait until he was finished eating and left, my son was on the computer and turned to look and saw gpa slumped over. He tried really hard to revive him, but couldn't. The point is find out what you can about Alzheimers, I saw a post where someone was explaining about possible seizures, learn all you can. When you have Alzheimers they can forget how to swallow from what I understand,. Also something with that punching bag in the back of our throats . Alzheimers is more than just the memory. Also know that their tastes change. I know that my mother doesn't like hardly anything, (but she is cantankerous). spices she used to love she can't tolerate. I think also they feel different things and explain them the only way they know how. My mom says she has anxiety attacks, when I don't believe that is what they are at all, it is something going on in her stomach neurologically. So ask different questions, you have to learn to be slick. My mom goes to the bathroom and then can't go, she will tell me she is constipated, when it is a feeling she gets that truly has nothing to do with a bowel movement. I hope this helps you , I am so glad that we have this place to go. Us BABY BOOMERS sure have our hands full. Karma guys remember Karma, we will get back ten fold what we give LOL. So lets hope we can teach our kids to be empathetic. We are all born, and we all die, it is reality. Hopefully our children will be kinder than this generation we are dealing with , I don't know if it was from the depression in the 30's or what ,, but man the all must have drank the same Kool-aid. LOl

my mum is early stages and I dont have this problem yet? Just one week after respite I noticed her repeating the same story over and over it was very scary but she hasnt done this since??
I must say though although I dont have children I think its sad that your kids dont understand and support you? I think I would sit them down and tell them that they need to understand this illness and how much its hurting you that they dont visit and how much you need them to support you. visiting a sick old lady is not much fun but thats life and surely spending a short time with her isnt asking for much? When you are caring for someone 24/7 spending a short time once a week is nothing its so unfair that you feel that you have to choose your children should be a bit more understanding I just cant imagine letting someone go through this on thier own and when its close family it hurts like hell! Hope you talk this through with your kids they are being a bit selfish dementia is hard on everyone but its not going away and it will get worse. My mum does not want a NH or to move with me what do you do I have nightmares about her being forced against her will into a home she is not safe here on her own and if thats what her doc thinks we can enforce this by law here I pray it will not come to this.

Respite care. Look up adult day care centers in your area. They assist with ADLs, hygiene, and elimination needs. And they are often more cheap than nursing homes. You need a break too. Look at it like "daycare" for your mom.

My mother used to ask what day it was over and over and over. I think was because they would ask her at her daycare that question everyday. I was my mothers caregiver and she went to daycare while I worked. She became too much to handle just in the evenings and weekends. Dementia is tough, because the person becomes only self aware. That is extremely hard to deal with alone. Especially when they have constant problems and doctors appointments. Be careful with letting it tear you down. It happens without us knowing, now that she is getting skilled nursing she is alot better off. No medical issues , shes eating right. I am still trying to recover from it. Meaning , depression, social isolation, ect. It sneaks up on you.. Good luck I wish you the best.

My mother also has dementia, and I think the repetitive stories (especially about stuff that may or may not have really happened 60 years ago with people I have never even heard of) is the hardest part. I try to let it go in one ear and out the other, and sometimes I'm just rude enough to say, "Mom, I have heard this story 100 times and I simply cannot listen to it again!" and walk out of the room. Sometimes she'll shut up, but the minute I walk back into the room - no matter how long it's been - she launch right back in exactly where she left off.

As much as possible I try to keep my sense of humor, as both parents have dementia. I don't argue with them when they see something that isn't there. Sometimes I just pretend to pick it up and carry it out of the room. Sometimes they talk to people who aren't there, but hey! At least they're not talking to me.

I try to make it a point every day to hug them and kiss them and tell them I love them. Some days it's easier than others, but I find it seems to ground them, and when I do that they always know who I am. I would hate to be living in a situation where nobody touched me or told me they loved me. Doesn't mean we don't have arguments too, but I'm there because I love them.

Oh, and the anti-depressants (for me) help a lot too!

I agree, eib was too harsh.

I think Dementia actually makes you a worse version of yourself; excerbates all your faults and weakness and habits of your life.
My mom is always emotionally "needy". Never has been real strong and mature person, and now its much worse since she has dementia.

To answer you question, it would be good to wait til your mom starts looking around for food; then give her lunch. Sometimes they are not all that hungry.
Only trouble is when my mom gets hungry she can't seem to even wait five minutes until lunch is ready; but gets into crackers, etc, and spoils her appetite.
Dementia is hard. Yes. Especially if your personality and values have always been much different than your mom's.
I am sorry (for her) my mom has to live with me, but I am the only one alive to care for her.
I never got along with her very well, but I do try to accomodate her whenever possible. I have always had a very hard time relating to her as a person because she is so different emotionally from most of the family.
My mom really loves to eat out a lot. Maybe your mom would like that kind of food, better (shudder). I take my mom out a couple times a week, not because I want to go but because that makes her happy.

My mom, too, is obsessed with what day today is, what day tomorrow is, and do I need to go to church. O.M.G. For a while digital clocks (found in WalMart) that has the day/time/date/AM or PM on it worked fantastic. Had them all over the house. Now with Mom being in the next phase, those didn't work anymore. Finally we found in the Dollar Store a small white board that we write on daily saying "Today is: _______", "Tomorrow is _________"; "______ is coming ________(tomorrow)". It has been a sanity saver, that's for sure. Found a bigger white board and put the weekly schedule on it; however, that was a big bust & is now tucked in a corner unused. I do like the suggestion of others that suggested creating a daily schedule & placing it on the fridge. That would be extremely helpful for both Mom and the various caregivers who are sharing in Mom's care. thanks!

Raven, I feel you. You're describing my mom, too. She was in the hospital a couple of times in restraints and those fat gloves on her hands. She went nuts in the hospital, too, and they drugged her right on up. And yes, with these types there's no such thing as 5 minutes off, let alone a 'me' day. I had to watch my mom like a hawk or god knows what the hell she'd do or get into next... I felt like the living dead dealing with her. Hell on earth...

Great advice has already been given... My advice...How do you handle it? A joint, or a big fat margarita. :)

Just kidding!

Hello Raven 1. Thanks for telling me your story and yes it does help to hear, but after reading yours i have actually nothing to complain about. I feel so sorry for you and think to myself that if i was in your shoes i would've mentally cracked. You are one strong woman. My heart goes out to you. X

I am so glad to see your question and all the replies. I feel somewhat better to know that other people are going through exactly what I am dealing with. My Mom was having gall bladder pain and after testing she was admitted to the hospital for surgery which went so well. Her heart however went into Arrhythmia and she spent 8 days in the hospital! She went crazy on the medications they were pouring into her. We finally had to put restraints on her, which she chewed off, by pulling out the straps with her teeth! I had been with her for 36 hours with zero sleep and went home telling my sisters, I am sorry but I cannot stay with her another minute I need sleep (I have seizures). Well they work, so they would not go stay with her, so she was alone in restraints all night. She must have gone really nuts because the staff mentioned her behavior several times the next day, but would not tell me what had happened. I was however told that one of us had to be with her all the time or I needed to hire someone to stay with her!

They tried so many medications, Ativan, Halalol, Morphine, Seraquel and nothing works, we can't knock her out! They say there is something about her that works the opposite of anyone else. Xanax doesn't work either.

Her doctor said put her in a NH or hire in home care for 8 hours a day, you cannot handle this alone, you with fail, you will hate yourself and you will be sick. Now I am having to consider so many things I never thought I would.

Prior to this Mom was always asking the same question, over and over and she still does, but now it is worse and I have to watch her every second, every second! I was in the same room with her and turned around and she had medication out getting ready to take it and fought me over it, as I am hiding the medication, she slips out back and I find her pulling a trash can full of rocks up onto the patio....she just had surgery but she doesn't remember that or that she was even in the hospital so she does not believe anything you tell her and will call you a liar along with many other things.

My family is of no real help. They work but one lives with us and still gives little help. It is as though, they are exempt from helping.....I don't get it, yes I have POA but that does not mean I should be carrying the entire burden here. I am becoming angry and resentful of what they are doing to me by not helping.

I too get upset with Mom and may raise my voice because I am so frustrated, I am fighting a losing battle and I am mad at myself for not being perfect and knowing what to do and how to handle every situation and I am tired, I am tired, I am tired. I wanted to be a champion for my mother but I am realizing that I am losing here and it is hard to face the fact.

We are not alone, none of us, we feel like we are but we are all going through the same exact thing. I don't think I can continue this much longer. I feel like the old car that never gets worked on and the owner just drives it til it falls apart....I am falling apart. My family is just hiding out so they don't have to deal with the situation.

What I do is SUCK IT UP, go outside for a spell, think about the truth of what is going on then. Its tough! My mom is from Boston, Italian, and hardcore. She is my world and she has been with me for years, and trust me she one tough cookie. Long walks help, cooking, even though she thinks my cooking sucks, and my bedroom is my alone place. Get help and take as many breaks as you can, even if it is just to sit outside the home. Pet your dog. I understand some must go the nursing home route but I am not a advocate of it, MOST of us should just need to calm down (whatever it takes) and it accept it as part of the wonderful life-cycles. I thank god I have had the opportunity to spend this time with my mom.

Thank you LindafromVT when I read your response to conversations with your elder I just broke out in laughter I needed that thanks!

Marlene001, my heart goes out to you, you've received some great advice. Smaller, meals, talking directly with your adult children about the disease and needing support from them. Going out spending time after getting mom a sitter perhaps. It's very frustrating this is where I come to vent, however not all is lost, there is much gained caring for a loved one. Trying to weight my next move! Your doing great, try changing the subject quickly sometimes that works and then she may forget what she was originally driving you crazy asking! Best Wishes to you on your journey!

I used to write giant signs and hold them up, the best one said "I Don't Know" and it turned into a joke, my confused Mom laughed her head off everytime I raised the sign. I too have been through it all and believe me, as hard as it seems to you, its just the tip of the iceberg. They then start pulling down their pants and peeing on the floor, stop walking, stop talking, etc. I hae a hoyer lift and keep my Mom comfy as I can, with talk, music and lots of hugs. Your children will treat you as they treat their grandmother so they should get used to it. I also have adult children and oh they have learned soooo much and can make her laugh now. Hang in there, we might be in their confused shoes some day and I do believe we get what we give.