I have so much anger and impatience dealing with my mother's dementia. I need help.

I am an only child(60 yrs). My mother passed away in 1993. My dad began being ill about 3 years ago from end stage liver disease(the man never drank) that was undetected for decades. He is 84. We lived 4-5 hours apart. The last year that I worked, I drove to be with him every day off that I had-- going back home just in time to get to work. We paid in home call to come in several times a week. After a year of that I had to retire, put my things in storage and move to live with him. Since Sep of 2010, I have been with my dad 24/7 except for a 3 day period when my son stayed so I could handle business out of state. I have left him alone at the most maybe an hour to go to the market or run errands. Things have progressively gotten much worse mentally. Both his liver specialist and regular doctor say this is all from the liver function failure. Nothing can be done because of his age-- he takes several meds..Ironically, his physically reaction to this disease has not been as bad..the doctor thought he only had a few months to live-- here we are almost 3 years later. he takes meds for mental but I've been told it's not really going to make much difference...
anyway--fast forward to now....he has and continues to become more critical, mean, etc. He varies from day to day on his motor skills. He has delusions, paranoia etc-- he has it all. I am a wreck. There are times when it's just confusion, and other times when it's extreme agitation...Like living with a manic depressive or schziphrenic. I gained 40 pounds in the last 3 years. I cannot talk on the phone during his waking hours because of his paranoia--as a result I have lost contact with most friends(although they do understand). What few other relatives i have(who are also elderly) have had to take a back seat as I am unable to go visit them etc.
I'd often told people that I would not put him in a home as long as he could use the bathroom pretty much by himself-- well I fear that is going to be a problem soon. More and more, he seems to be so "out of it" that I know that any time he's going to not be able to handle it himself.
His regular doctor gave me tranquilizers for him(very mild) for when he gets agitated.. When he takes them he sleeps all day, which is not a problem, but he becomes so weak that I literally have to carry him to bathroom etc and he can barely speak(slurs words)..So I guess that's the choice, agitated and mean or so feeble he has to be fed etc..
I'm at my wits end. When I think about him passing or going into a home, then I feel the other extreme...guilt etc. Mostly just wanted to get my feet wet here and vent a little. If it weren't for the computer and cable tv I would have gone crazy by now.

The public needs much more "dementia education". I am surprised how many people take the elderly really seriously. Of course, thinking back, I did too when I was younger. But there were good people around then who told me not to mind. Now, if I cannot wave them off, I may have to pay for some service or item that my mother did not really want. However, My mom has a classy physician who is in late middle age herself, but who is so gullible, that she does not order Depends because mom says she does not need them! I am so busy cleaning feces that I get it in my system and come down with severe bladder infections whenever I am with her. I go home to my husband & he is getting irrate! I cannot see all the e-coli that has been smeared around. She definitely can't. She will wear the smears in public and have no idea why people are smiling. The stuff is under her nails too.

Gerontologist-You should buy my book, it's titled "I'm Not a Lady, the Dangly Bits are a Dead Giveaway".

Thanks for the info, but I have to ask, does AC approve of you promoting your book here?

Ladies, you are all over the board with your issues here. You are however describing normal behaviors that occur in persons with dementia. These behaviors are related to the damage happening in the various lobes of the brain. For example, the Parietal lobe controls pain, taste, touch and temperature. People with dementia are colder than other elderly people, don't interpret pain the same way, can feel touch, and crave sweets because its what they can taste. These are late stage (five) changes, so many families make decisions to focus on calorie count for the day rather than did my loved one eat her peas and carrots.
Remember depending on what stage of dementia your loved one is in, you are trying to provide care for persons who may have lost 1/2 pound of brain tissue to one pound to one and 1/2 pounds to at the end of life two pounds. In other words, every annoying, frustrating, dangerous, embarrassing, confusing thing you are dealing with are all related to the damage the disease is causing in the brain. Some of you are seeing loved ones behave like children, have tantrums, or require the level of care a toddler would need and its all from the dementia.
One of the most difficult areas you face? Unlike other diseases, people with dementia don't look ill with the disease until they are almost at the very end, i.e. stage six.

Patti,I lost my best friend my daughter last year and now it's me and me along to dear with my wife. But she is my baby so I do not mind. ,I never thought that I would be dealing with dementia ,it's is such a bad lingeiring desist and it's sneaking ,slowly brain deaise. That before I know years have past.Get help as soon as you can if you can,hugs n much love.Johnnycares.

To Patty99, I know EXACTLY the feelings you have! I have had, and still do, have these same "yearnings'!!! My mil is 93 w/dementia/stroke. My husband has her POA, his only sis had it first( covertly gotten),only to get her greedy hans on her mom's bank account! When that was depleted she did not want the resposibility of a POA and"smugly" passed it to her older brother( my hubby)! And so I stepped up to help with caring for my MIL too...... Well since I, never was thought of as part of their family (even after being married to the only son for 33+ yrs), I still was there to take up the responsibility, along w/her son! But alas there was still resentment from my MIL? Her own daughter doesn't even go see her except when there is something she will get out of it!!! This daughter sucked her moms funds DRY, now WE (my husband and I) pay all of the MIL's exspences. What a nice daughter....NOT!!! Yet I am the one my MIL lashes out at , and yes it does hurt. Most days I want to run away as fast as I can, never looking back! When the comments are made about what an ungrateful person I am, and that" my mother should be ashamed that she had such a rotten daughter like me"!!!!! I felt like strangling her at that moment! And the SIL for never being there for her own mother!!!! I lost my mom in 2011.....I miss her sooooooooo much, then when someone you are trying to help makes a nasty comment such as that well.... I left the room crying, all the while thinking (" you should be saying this of YOUR OWN ungrateful offspring, you call a daughter!")!!! So Patti do not feel alone........we have a lot in common, in the "feeling like running away" dept.! I know that this is the progression of this diesease and my MIL isn't the same person she once was but, it is not exceptable to say these hurtful things to anyone, at any time! Hang in there, we all stick together here, through thick and thin!! Godbless and hugs to you

I tried to find an adult day care for my mom in my area but the only thing they have here is to take her to a group home for the day or visiting angels. Well, if I had that much money, I would take mom with me and go shopping all day. They want $20 per hour, I wouldn't be able to afford to go anywhere paying that price. I think when my mom passes, hopefully a long time from now, I am going to help caretakers with relief and not charge them an arm and a leg for it. I will go to them. sit and care for their loved one and charge on a sliding scale. I got my one day sleep in the day before yesterday, and it was right back to JOLENE all night long. Again, my name is not Jolene, but that's what my mom calls me now. I am so tired today that I can't see straight. Hopefully I will get to sleep tonight, even if it's just a three hour time frame. I did get the neighbor to agree to watch my mom on Saturday and I am going to go shopping with both my daughters ALL DAY LONG. I won't have to race around to be back quickly, she says take the whole day. I can't wait. I feel for all of the caregivers out there, especially the 24/7 365 people. God bless you all.

Hi Patti, gee, we really all are living the same circumstances, for what ever reasons. Only you can decide if you want to care for her in your home or somewhere else, or if you cannot do it any way at all-we l have to figure out our own path. You have come to the right place for some help though, and we welcome you! I was ready to give up when I found this site, but here I have become less isolated, more loved and have learned, shared, cried, ranted and laughed til I cried! You will too, just keep coming back. It WILL get better! I'm glad you reached out for help. You've receive lots of good ideas so far-I agree w all of them. I would add to look at the teepa snow dot com site at the resources section. You can learn a lot from the free u tube clips there. There is a certain way to improve interactions w dementia patients; she is an awesome teacher who makes it easy to learn some mad skills! Many of us have moms w mental health issues prior to dementia- it can be done. Take time for you n get some respite, where ever u can find it. It makes a huge difference in what you'll have to bring to the table, promise! Let us know how u r doing! Kimbee

THIS ALSO IS MY LIFE 24/7 and the constant correction or directives really gets to me but she has done that all her life with everyone! It is just worse now. She still puts my youngest uninvolved sister on a pedestal and speaks with her like she is the best thing since sliced bread and she does not ever come visit or help. Now for her hearing aid, when used we can have wonderful conversations, but she chooses to NOT wear it and I refuse to NOT repeat myself telling her why. She is stubborn beyond belief but that again is nothing new so all the painfull things from their past gets magnified and annoying and that is when I walk away and when I come back she seems to perk up and acts nicer. She has a fractured back from not listening to me asking her to stay put until I emptied the car - her doing - her expense. She has the $$ and would give me anything. I am POA and will not touch her $$ unless it is for her. I have seen how others whose parents have less than $2000 in the bank - that SS will pay caretaker $2000 a month stipen to keep them home so I am working on getting my courage up to paying myself for the same out of her money for household expenses, food, taxes, car ins. utilitites. I can validate that in my own mind but not a payment from someone who gave me life. My husband is on SS and we bring in less money than one that has to claim taxes so that will be my next stratergy. All with her knowledge and permission. I will put aside a few dollars for myself to get my hair done since I have been doing hers for my whole life - color, cut etc. My nails will also be done regularly and if I kill my back doing something to move her etc - I decided to make appt for massage too. This is what home care in your 60's does to you with a really bad back. I have now something to look fwd to to help me and my husband pay the bills. She gets her pension and ss ck each month - my sisters are no where - she would have to pay to live somewhere - so now it will help us with expenses. Check out that "how to get paid for being a caretaker" google it. It is all there if parent has less than $2000. I would never downsize her$ to qualify so with her permission - I will do it my way for all the tlc she gets 24 hrs a day at home and
never wants to go to a nursing home. She is a love most of the time but the typical obcessing can be redirected with folding laundry etc. Notes don't seem to help - but I have put a lock on my bedroom door for pvt conversations on the phone - since she gets exasperated when I am on the phone. I am 1700 miles away from dear friends that I have always kept up with from home way before she came to live with me and I will not be questioned or suggested to get off the phone because it takes time away from her. I agree - the more you do for them - the less they will do so "buck up" and ASK her to set the table around 3pm. They also need a half of Ativan at that time so ask your doctor. Do Not ask her for help when she is underfoot while you are doing dinner. Ask her to clean off table of her own things - mine likes to leave for others to do. Until now - I have done it - now I say - Mom pls put your dishes and table mess away where it belongs like we do - most often she will. AND WHAT IS WITH THE SWEET TOOTH??
I have to hide all pastry, cookies, etc. and take out only for desert since she would eat all the junk in the house first and never have appitite for real good food I prepare. Frozen Cherries in store should be a staple for constipation or just daily comfort. Put on cereals, in small cup for snack, and blueberries frozen
too. Keeping them regular is sooooooo important. Their activity is not often enough to keep them regular - Prune Essence Orange or Lemon is great too. I need to keep her drinking since her urine is too concentrated due to her not drinking enough so - I buy 4 pcks of crangrape and kids 100% juicy juice cartons and just give it to her to drink. One thing I have learned - DON'T ASK - JUST DO IT. Kidney function is vital and urinary tract infections can cause delerium and more confusion so be on top of that always. If she voids (pees) ask her to not flush the toilet after she goes - fib and say you are cking the water pressure. If it is dark - get it cked - if it has a foul smell - have it cked by calling your doc and keep sterile urine containers in the house so he can call it in to lab and you can bring over after she has her bath. Bathing and cleaning her pvt areas is essential - they were brought up in the Puritan days and do not
TOUCH THEMSELVES AS WOMEN - put gentle liquid soap on their fingers while you hold the spayer and ask them to sep. their pvts and clean - most will freak like mine did and just want to use a soapy face cloth but unless they actually sit in a tub of water - this needs to be done 3xw. Saving them from a UTI could save their life. Men has no issues with this. Good luck and do not expect a CNA to do this properly. Yes I am a nurse but when pt is your mom -nothing is easy. God Bless Rae Rae

Patti, I so related to what you wrote. My mother is a dependent personality who is combative and controlling at the same time. She chooses things to obsess on and brings them up again and again. I had to turn my ears off because I know there is no way I can make her stop doing it. These are not new behaviors for her, but they've gotten worse as her memory is vanishing and her confusion increasing. Sometimes I have had enough and go back in my room and hit the palm of my hand. Ouch! Then I play with the rabbits a few minutes until I feel better.

The obsessing that goes along with dementia can be like a scratched record, with things playing over and over again. It can be strange that our parent may not remember what they did the day before, but they can remember the things they obsess on.

How does your husband feel about things? Maybe you and he can chuckle and make things easier. Much of what our parents do are irritating, but not so serious. Since your mother is a dependent personality, something that will help is to set limits on what you will do and stick to those limits. Does your mother help with the bills? Maybe she can do that. It would help her feel useful. Encourage her to do what she can. My mother will let me do everything for her except eat and watch TV if I let her. For example, this evening she said she couldn't reach high enough to hang something up. I had just seen her do it with another article of her clothes. I told her to keep trying because it was good for her to stretch. (Why she was hanging clothes over the window, I have no idea, but I wasn't going to do it for her.)

I need to set better limits myself. My dependent mother consumes way, way too much of my time. This has really harmed me, so it needs to change. Unfortunately, her selective memory forgets everything I've done. She tells people all I do is sit in my room. Very strange, since I don't have enough time to even do my work.

Wow...I know the feeling well. I know it's frustrating and you can argue until you are blue in the face...but no matter what it's not the person you once knew. She is slowing losing her ablities to function. But in her mind everything is alright.
My advice is to let her be...walk away. Get fresh air and a fresh perspective.
I am taking care of my 91 year old mom with progressive dementia. She has a jekyl and hyde personality. One minute she is a sweet person...the next minute she is angry and opinionated. My mom was never like this before the dementia. Never would speak a bad word about anyone..always considered feelings. But now...oh boy..some of the things that come out of her mouth. Yikes. I love my mom...I hate this horrible disease. But I totally can empathize with your frustration.
Respite is a wonderful thing..if it's available to you...I highly recommend you use it. But in the long run...just know you are doing a wonderful thing and will be blessed because you did.

Patti99 I'm going to give you a suggestion that you may find impossible but try it. Instead of changing the things your Mom is doing, look at it like... Well, at least she can do that and it keeps her occupied. Remember playing house when you were little and you'd pretend that you were having a tea party or making a mud pie. Barbie and Ken were living it up in Barbies Malibu Beach house or riding in her Pink Corvette...not real but it was fun for you and you were occupied. Your Mom let you do such things because you were in a happy place in your head and not harming yourself by doing these things. In other words if it's safe it's a good thing!!! Music is always a happy pass time for an elder with dementia. I see it all the time at the NH my Mom is in, the whole gang gets happy, it takes them to a fun place in there head.
If you want to keep your space of limits try posting signs, such as Patti's room, Patti's closet, Patti's chair, she may forget you told her but she can read. You can get some freedom from these signs... if she wants to know what day it is post it on a message board daily she will eventually look at the board and stop asking, you can also write what time of the day you are doing this or that she will rely on the board to see what time lunch is pill time etc. eventually she'll be telling you what's next. If she has the desire to drive, when you get in the car tell her you thought it would be nice to give her a break and ask her directions like she is the boss, even if she has no idea your still driving pretend she is the boss. They need no stress and to feel independence, but they don't have to know your really in charge. Tell her she's beautiful and special and scream in the other room if you have to but don't let her see you stress, "you know" she's not right all the time but "she needs to think she is". At the end of each day have a moment to praise yourself and be glad you are there for her and you made it through that day! You need to be proud of yourself because I am sure no one else will be (except on this site). Unfortunately this is a thankless job but it's rewards come later and it's A Greater Feeling than you'll ever know!!! The reason why your Mom depends on you is because she knows deep down she can she knows you better than you know yourself. Mom used to distract me so she could fake taking her pills. She used to hide evidence of eating things, all because she knew I would question it. Just remember that forgetful is never stupid, LOL that was my mistake she out-smarted me all the time. I feel for it, she knew I would by the sweet act so she could get away with stuff. I look back now, when she was at home with me, and realize that she played me all the time. She thought like a 2 year old on a mission, her focus was on what she wanted and how to get it!!!

Patti, I understand your frustration. There are some very good pieces of advice here. Get some locks, and start dementia-proofing your home. One of the major hurdles for an adult child being a caregiver for the parent is the nature of the relationship. Never think "I can't do or say that to/for my mother. I can't treat my mother like..." You WILL have to treat your mother like a child. You WILL have to say "I need to get away from my mother before I smack her one". The people here understand that in a way that non-caregivers do not. Do internet research and find programs in your area for respite care, adult day care, etc. If you try to butch up (or whatever the female equivalent is) and do it all yourself, you'll only succeed in making yourself sick or dead from the stress. Use medicaid/medicare services when you can. Put that lock on your door and build yourself a safe haven. Finally, if you can't do it, then you can't do it. Nothing wrong with that. Again, people here understand more than outsiders that putting mom in a home isn't a shameful thing. Ultimately, it's better for her to be in a facility where she'll get care than it is for her to be in your home if you can't handle it. You don't owe a stress related death to your mother.

Oh, one last thing. I know the obsessive list making is annoying as hell. My dad can't concentrate on a half hour TV show, but he can sit at the kitchen table and go through a phone book making notes for hours on end. At the end of the day, if they aren't writing on the flatware with dookie, who gives a rat's patootie? Just ignore it (as much as you can, I know they can be demanding). You also might speak to her doctor about medication if she's agitated.

I have to ask God for the patience to deal with my 92 yr old mom. Sometimes he gives it to me, sometimes I don't think he hears me. Pray for the strength to deal with her.

How old is your mother? When was she diagnosed with dementia? (I think that the strategy might be a little different if she is 97 and this will be self-limiting or she is 78 and this could go on for another decade or more.)

Your patience level might be improved if you learn more about the cruel, terrible disease of dementia. It is annoying to have your mother messing in your room regardless of the reason, but you may be able to deal with it better once you understand that she cannot help this. You are so right -- this is not at all like training a young child. She cannot learn appropriate behavior. So you have to take measures like locking your door. Understanding dementia better will probably go a long way toward reducing the stress.

Some of your frustration may go back to before Mother even had dementia. You blame her for not trying to be more independent after your dad died. But to be fair, you must have enabled that dependency for it to take such deep root at your house. This is not a criticism -- you were also mourning your father and you do doubt wanted to be gentle with your mother. But if there was a good time to discourage the dependency, it was then. With dementia, it is just too late now to change that. Being angry at your mother or angry at yourself for this isn't going to help anything.

Which leads me to my next suggestion. Caregiving someone with dementia is EXTREMELY stressful. And if that someone is a loved one you have an imperfect history with (and all histories are imperfect) it is even harder than if it is a client. You deserve professional support in dealing with the very challenging issues involved. Getting some counselling won't change your mother's behaviors but it can help you deal with them with less stress to yourself.

Caregivers absolutely MUST get some respite, and this is especially critical when caring for someone with dementia. No one can do that job 24/7/365. Take ladee's advice and find out what kind of help may be available for caring for your mother.

Learn about dementia.
Get some counselling.
Get some help.

And feel proud of the care you have been able to give your mother all these years. Now be sure to take a little better care of yourself.

One suggestion is to put a lock on your door.... she possibly does not remember and only she knows where she thinks she is when she's moving things....and yes, no more driving....
Let her make the list and get what you need and nothing esle... she may or may not remember what she put on the list.... if she asks, tell her 'loving lies'.... they were out of such and such....
Have you tried redirecting her when she starts obsessing, or have you tried just keeping the flyers out of her sight??? Sometimes when she is doing this, bring her some clothes to fold... even if you have to unfold them first.... with Alz, we have to do 'creative' caregiving..... and yes sometimes it seems they do it on purpose, hard to tell sometimes... and if she was always dependent on your dad, she is NOT going to change or try to do things differently... and possibly if your brother doesn't want to help, hands on, he could send you some money to get some in home help once in awhile and give you a break...
You can also contact your Area on Aging and see what she qualifies for,,,, there are many things that we just don't know about unitl we start looking for help....
And you haven't killed her yet, so you must be doing a good job regardless of how crazy you feel sometimes....so come back and let us get to know you and we'll help... if nothing else you will know you are not alone....
And my avatar... thats a caregiver after a day like you've been having..... hugs

I am a caregiver for my mother who is in good health except for AFIB and dementia. My father passed in 2000 and my mother has been with me and my husband for our entire relationship . ( we started dating after my dad passed) . My mother has always been a very dependent person. I feel angry because she never really tried after my dad passed away. She just stayed with me and depended on me. Within the last 2 years her mental state has declined . She is in a robotic life style , she doesn't socialize , doesn't want to. She has obessions with grocery shopping. We just decided she can no longer drive. Now I have to listen to this constant grocery obession. She will not leave her chair and makes lists from the flyers. I am trying to control this and we argue . I lose my patience so bad.... yesterday I felt pressure in my head like I was about to have a stroke. I have one older brother who does not offer help. I love him and know he is not acaregiver but it makes me angry. I feel like a prisoner in my own home. My mother constantly does what she wants and doesn't seem to respect my space. I have asked her to stay out of my room and stop moving my stuff and she just continues like I never said anything. I don't know if she does not remember the conversation or just does it because she wants to. I leave the house as much as I can. There are so many things I want to do but she is always under foot. She is running up my electric bill by constantly turning the t.v on and not watching it ...she has one in her room but does not watch in there. You know when you have kids that do things you can teach them but my mothers brain is going backwards and she can't or won't process. I just want to get in my car and drive away

I and many others here completely understand... think i posted the other day about the 'going to the bathroom ritual"... I am ready to scream by the time we get done.... let us know more about your situation and we'll see if we can help.... sounds like you are too tired, and that we can relate to also.... so welcome to the sight, and let us know what' going on with you and your situation....sending you the caregiver survival kit... hugs, love, angels and chocolate...