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

If your kids are adults then "a shame on them"! If not for your Mother than they can visit for you.. They don't have to stay for hours just pop in and pop out! Tell them it will make you feel better!

If they are actually "kids",I understand how it can be scary and confusing for them.. You could have them make her a card or bring something they did at school...

I think it is more helpful to refrain from using "shame on them" kids are raised sometimes with a great deal of guilt and shame messages. I would sit them down and talk to them about mom's dementia, they have the right not to feel comfortable or wanting to visit her in my opinion, maybe you can encourage brief visits if they would like to do this.

you don't, take a breathe, my mom has dementia and that is part of the disease, she cannot help it, you either need to be able to handle it or find a nursing home, will keep you in my prayers

also sounds to me you do not know much about the disease, you have a computer, use it look it up, then maybe you will have more patience

How soon some forget that caregivers need support, thus the very reason why we come here and ask questions to begin with, ask for advice, etc... Your children if adults, should at least come by to visit you. With your children, adults or not, they need to be spoken to about this, your mother's condition, what it means, what it requires and that you need their support as a caregiver, emotionally at least, and how much that means to you. One reason is very obvious, if they don't learn how to love someone who is sick and/or elderly now, and respect this part of life and the need for family to support each other, then they will not be there to support anyone else down the road, not friends, not a spouse and not you. We all have life lessons, which continue through our life journey, and this should be one of your children's life lessons. As for help with little things, get mom a calendar, put it on the wall near where she sits all the time, or set it at a table very near where she sits, as each day passes, mark across it with an x, let her mark across it, let her look at it as much as she likes, let her know the calendar is hers. With food, make smaller portions so when she doesn't eat all of it, there's not a lot of waste. You might try feeding her yourself if she'll let you, and keep lots of soup on hand. Try sitting with her and eating together (don't know if you do or not). Ensure is really good, chocolate is best, if she really gets to where she's not eating enough, this will help keep her nourishment up, most people like it. I also recommend basically childproofing your house now if you haven't already, that's the best way to look at it. Locks for cabinets and stove knobs, doors to basements where there's stairs, etc... As far as patience with it all, look at adult daycares in your area, it's worth it, you will need breaks from this. Many hugs to you, and remember to somehow find time for yourself.

Gee eibunicorn...you are harsh. Have you had a mother with dementia asking you the same question every 5 minutes....worse yet telling you the same stories over and over and actually making you sit down and listen. My mom would demand I sit down and listen to her stories. Some I just heard about 30 minutes ago. It is pure hell. Luckily I was able to find an affordable nursing home for my mom. Now she has a whole staff and residents to talk to all day. My quality of life is back and even though I feel somewhat guilty, it's the lesser of two evils.

Hi Marlene001. My mother-in-law had a period of dementia about five years ago while in the hospital. Being in the hospital was very disorienting to her and it caused her to hallucinate, repeat things constantly, forget names, be unwilling to eat.etc. What frustrated me the most was that I had no strategies for dealing with her condition. It sounds like that is what you are asking for now. As a starting point, I'd suggest NOT spending a lot of time making her meals because she is not enjoying them, through no fault of your own. As long as the food you are providing is healthy, that's what counts. But by making a big meal that she then rejects, it is only causing you resentment. So just make sure she eats, but don't worry about it being a nice meal for her (although you should make a nice meal for yourself if you enjoy cooking!). As for your children, I agree with GrannySmith that you need to be honest with your children. If it is too difficult to tell them in person or on the phone, then send them an email or letter. You don't have to guilt them into anything, just let them know that you are dealing with a very difficult situation and need their support, even if that is tough for them. GrannySmith and some other folks here have articulated some good strategies about eating and houseproofing. Seeking support, talking to people in the same situation as you (like on this board), and not feeling guilty that you cannot fix this will all help. Hang in there.

Resistance is what causes us pain in relationships with others. Peace comes when we stop thinking (and speaking) that things should be different.

What has helped me deal with exactly the same behavior in my mother is to accept what is and detach my emotions, except for love. Let her be.

You don't have to answer the questions. Can she still tell time? Then write down the schedule for meals and snacks and post it on the fridge. Her eating preferences will change. Just when you adapt to one set of circumstances, everything will change. You can count on that, so there's nothing to get upset about. This is simply the normal course of the disease.

Perhaps medications (for her, although maybe for you too) would help. After 10 years of avoiding what I think of as *strong* drugs for Mom, I recently took her doctor's advice and started her on two prescriptions designed to tone down the repetitive, compulsive, incredibly annoying behaviors. This has been a big help for both of us.

Blessings to you and your loved ones that you soon are able to find some happy compromises in these difficult circumstances.

My father the last week of his life, repeated help me all day 24/7. No matter what I did he wouldn't stop. It started after let left him fall at the rehab center. I slept about 3 hours that last week. what I got short with him I felt so guilty. But I held him laid beside him in his bad at night. He couldn't eat or drink. I would give anything to have him back and hear the help me again.

Marlene, many of us know what you are going through. Granny and Scratchie had such good advice that I don't think I can add to what they said. My father had a small "time station" in front of him that had the day, date, and a clock. It helped him orient to time, since he could see it at a glance. That may work with your mother.

I have heard my mother's stories so many times now that I can say them along with her. As many times as she tells them, she uses the same words for the major points. It was irritating for a while, but it doesn't bother me anymore. I guess it is because I accepted that it is what it is, so I just go with it. My mother has other thinking problems (obsessions) that are hard to deal with, so the repetitive stories seem tame now. They are just part of old age and dementia.

Sorry you got some harsh answers. Many of us know exactly what you are talking about and know how nerve wracking it can be. How you feel is very normal, so go easy on yourself. It helped me to lower my own standards when it comes to cooking and cleaning -- things I never liked to do, anyway. :)

Totally agree with San Antonian54. Having patience is NOT easy with a person with dimentia. This is the way a conversation went down with my mom 2 weeks ago. "When are you leaving. Tuesday. How long will you be gone? 6 days. (Whispers) Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday. Oh my gosh. That's almost a week! Now when did you say you were leaving? Tuesday, mom. And how long did you say you were going to be gone? 6 days, mom. (Whispers again). Tuesday, Wednesday, Thursday. Friday, Saturday, Sunday. Oh my gosh, that's almost a week! So you're leaving Monday? At this point, I'm getting totally exasperated and my voice starts to get louder. NO MOM! TUESDAY! TUESDAY!! And how long will you be gone? And on and on it went until I told her I wasn't going to tell her anymore. I'll be back when I'm back. Then she says no. Just tell me. I finally had to change the subject which I have to do in order to keep my sanity, but she only finds her way back to it and I just can't get on that merry go round again.

It's like that Pete and Repeat joke you heard as a kid. Pete and Repeat are out on a boat. Pete fell out. Who was left? Repeat. Pete and Repeat are out on a boat, etc, etc. it drives me crazy. I try to have patience, but it gets the better of me. I have found a wonderful caregiver who does excellent respite care. She takes her out several times a week, for drives, for ice cream, shopping etc. and she's so reasonably priced. I have complete trust in her and she's been a God send. With her and another lady who comes to clean her house twice a week, it's manageable at least for now. I try not to think about what happens when her dimentia gets worse. I'm taking it one step at a time

My mom refuses to go to assisted living or adult day care and is extremely difficult. She fights me all the way. Thank God I have a POA.

Mt advice is to check in your area for ads. There are a lot of people out there who offer respite care. I just happened to see an ad posted in a local diner. She is well known here and came highly recommended. Believe me it will make your life a whole lot easier and you can reclaim your life and your sanity. Good luck!

The funny noises could be partial seizure activity and should be reviewed with her Neurologist. Dementia patients need annual CT scans and a good review of medications, including supplements. I am so sorry this is affecting your kids, they are obviously frightened and confused, don't know what to do, and your level of distraction may mean they feel you aren't paying attention to them. It might do you some good to get mom a sitter and you go to the kids house for a break, even if it is just a couple of hours. Let someone else be in charge of entertaining YOU for a change, and relax.

My mother also repeats her self over and over. That part is no big deal to me. I just listen but everyone has there cross to bear. I love some of the ideas for helping her with what day it is and meal time. As she sometimes forgets to eat and other times over eats. However my mom is still in so much denial. If I try putting up notes for her. She just takes them down and throws them in the garbage. and says "I'm, not stupid" Always accusing us of thinking she is stupid. I hear her mumbling in her room all the time about it. Also feels she has to sneak food up to her room. And then washes dishes in the bathroom sink. NO soap. When I try and have a conversation with her to explain that we know it is her disease not that we do not think she is stupid. She gets it for a minute but then all is forgotten. So sad. I know she is scared and I wish I could do more. I don't want to lock the fridge but she can go through a whole jar of jam in two day sometimes.

We have a white board on the fridge. I use it for reminders of appt's, draw hearts, silly stuff - and my husband seems to like it. Of corse, sometimes it isn't the way he likes - but that's ok - and we change it. I like the white board as it is easy to erase.
This disease is tough - I find reminding myself that he can't help it - is helpful. We're here for you.

Marlene...This is dementia. Nothing prepares us for it. And every person who is a victim of it is different. They react differently to different stimuli, to different people. The great majority of people I know (outside of physicians and support group) think that when a person has Alzheimer's, or any other dementia for that matter, he or she just simply forgets who people are, forgets who they themselves are, and sits around staring vacantly into space. This is so far from the truth that it's laughable! My Dad becomes fixated on the strangest things -- for example he thinks his fingers are falling off; he becomes obsessed -- i.e. believes he needs to go to work because they need help or he forgot to do something, even though he hasn't worked in over 15 years; paces and wanders around the house for hours at least every other night because he's anxious about something that he can't explain to anyone, before finally tiring himself out and lying down on his bed; talks about stuff that no one understands, least of all himself! He needs help with all of his daily activities -- showering, toileting (sometimes doesn't know what the toilet is), dressing; if he's too anxious he won't eat. He pockets food like a chipmunk and must be told to swish and swallow to get it down. And the list goes on! He is 80 and my Mom is 83. She still cares for him at home. Some days she wants him in a care facility yesterday; some days she'll never move him to a facility because we've visited 3 or 4 and they're depressing and sad. She want's him at home, yet at times she's so worn out she doesn't want him at home. She gets impatient, I get impatient, my husband gets impatient. It's just part of the journey, as horrible as that sounds. In the end the caregiver has to make a choice -- take care of their loved one or let someone else do it. My Dad may eventually end up in a facility, but he also my live out the rest of his life at home. I'm trying to talk my Mom into getting home help a couple of days a week for 3-4 hours a day, just to have someone sit with my Dad, shower him a couple times a week, maybe do some therapy. Hopefully I can talk her into it. But she's stubborn and of the generation that believes you take care of your own for as long as you can. In the end, you do what you have to do. I know that's not an answer, but its as close as I can come to one!

There is a wonderful clock out there that has the day and the time on it in digital letters. dayclox. It is a bit pricey but my mom loves it's-it gave her back a little bit of control. She hated not knowing what day it was- she just wasn't using the calendar anymore. She would call me almost everyday asking if it was Sunday (church). Oh and GrannySmith said it right on about kids visiting. I can only control how I'm dealing with this adventure. The very aged condition is something we all could face -I hope someone is around for me. God willing. Peace everyone.

Sanantonian54 ;left you a message on your wall but for everyone here, yes I have taken care of my mother with dementia for 7 years so yes I have been through it all and more than burned out, just got her into a nursing home last month and still waiting on medicaid to be approved, sorry if i sounded harsh, but when you take on this role, you should do your homework and research the disease, nobody more than me knows how frustrating it is but I learned if i needed to walk away and go outside and cry i did, i did all i could do and planned on caring for her for the rest of her life but as many of you know my husband abandoned me with my bed bound mother so the stress of both suitation took its toll on my emotially, mentally and physically, i should weigh 130 pounds and only weigh 100, so yes, i know just how hard it is and again sorry if i sounded harsh, would never hurt anyone feelings on purpose, many prayers

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.

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!

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.

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.

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

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

Just kidding!

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...

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!

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.

I agree, eib was too harsh.

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!

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.

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.