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

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

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.

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!

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.

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.

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.

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!

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. :)

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.

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.

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.

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.

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.

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

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

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.

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...