Follow
Share

my mum gets up at 1pm, I make her breakfast normally tea and toast then I make sure she eats something as shes diabetic shes not eating much but today was just too much after saying she wasn't hungry earlier and refused a sandwich I put the evening meal on at 5pm it was ham and takes along time to cook I was in and out of kitchen when she went "MAD" where the hell is my dinner im starving I havnt eaten all day.
I started shaking and ran to my friends house and now im staying the night lying on her sofa with AGAIN no movement in my back and in a lot of pain. I think im heading for a breakdown illness or not I cant live like this for much longer and wonder how much crap its going to take before I have a breakdown. I feel so bad for my friend as shes been working all day and I suppose the last thing she needs is me here crying but shes been a true friend and as her mum died from als she understands. I hate my mum right now and the fact that ive no place of my own and sometimes feel like nowhere to run AND hate having to depend on anyone for REFUGE its awful! I will head back now tomorrow and my mum will be in foul mood and banging doors I need help and think her doc needs to move his ass?
any advice god if only I had the money to leave here right now im sick with worry as to how much longer I can hold out I am living with a mad woman and I cant cope. I hate my family right now and cant even answer the phone when they call they have no idea how stressful this is. Carers are the victims of dementia is so true I don't want to be a victim I just cant deal with this. My mum will do what she usually does and that's call my sis and tell lies then threaten to kick me out this is abuse and I cant take it feel like crap and now know I need to get away from her or ill go mad.
calm down wont cut it now she is only happy when shes been waited on all day long and I cant live like this. God what would I do to have someone do everything for me except wipe my ass?

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
WOW ive been looking after mum with dementia for five years? you think we dont know its a disease? HELLO?
(1)
Report

Practioner as we say here In Ireland "no sh*t sherlock".
(0)
Report

It is very common when people with dementia get agitated and aggressive. But , I always teach families it is not a person who is acting, it is a Disease.
I facilitate support groups in New Jersey for caregivers where we share experiences and find the best solutions.
(0)
Report

Kazzaa, my mother is so complicated. She has never been mentally healthy, but with the help of tranquilizers, isolation, and showtiming for people has been able to appear somewhat normal. I think she even convinced herself for the most part. The dementia is removing her coping mechanisms. Usually I feel I am watching a descent into madness coupled with dementia. I don't think it is dementia alone. Sugar does have a lot to do with it, though I'm not sure of the cause and effect. I've noticed her sugar tends to go up when she is stressed and down when she's tired, even if diet stays the same.

My mother's worst day is usually on Monday. It is probably because her routine is disrupted on Sunday, when we go to church and out to eat. She gets to see people, especially the man she finds interesting. She enjoys going to church, but the next day is often difficult with confusion and anger. I wish I could take her somewhere like church every day, but she doesn't want to do anything except on Sundays.

Yesterday I went to the senior center for exercise and companionship. I did something I never do. I talked about the things I used to do in my job. I realized how interesting I had been at one time in dealing with alligators and criminals. Today I thought that caregiving, while seeming mundane, is much the same. Caregivers wrangle with situations every day that most people would avoid. Maybe being able to do this is why some people are caregivers and others aren't. It gave me some pride to think this. Caregiving can take a lot away from the self esteem, but there is no reason it should. We should be proud that we can face what we do each day and keep on.
(1)
Report

Jesse mum is the same i think when those moods come shes having a ministroke shes in foul mood for a few days i find when she eats a good healthy meal it calms her down a bit? with the diabetes thier moods can be up and down you just never know when shes going to snap! Mum eats one good meal a day meat and veg other than that im done trying to get her to stick to a low carb diet she will eat what she wants like make toast with jam OR bake scones when im out? so i just let her at it less nagging her means less rows? something will happen as her bloods are all over the place but she just either WONT listen or just dosnt register i dont know but ive given up you cant make them do what you want anymore i guess as long as shes safe and eating shes doing ok? seems like your mum is slipping into another stage but ive noticed mums gotten quieter? i say dont knock it! I know its not a good sign but i am enjoying a bit of peace now we never know when this can change?
(0)
Report

Take full advantage of those breaks, some people don't even have them! It IS hard to be so restricted, and to have to carefully plan every outing for when someone else can cover. And no, Mom won't break out in gratitude - she does not likely have the powers of empathy and perspective taking she might (or might not) have had earlier in life, and she needs what she needs, she could not really face the guilt of her needs taking up so much of others as they do, so there is that tendency to deny to start with. Do what you can to make Mom's life better, do what you can to keep your marriage strong, and yourself nourished, rested and healthy - no guilt when you've done your best! Don't hate on yourself for not being able to do it all or to do it all perfectly. It's hard to establish that "new normal." when this happens and life is turned upside down.
(0)
Report

Thank you JessieBelle, I've been waiting to hear back from somebody. Going crazy today, but feel so bad for mom as well. I need to focus on getting out for daily exercise, etc.. We have some caregivers so I do get breaks from time to time but the overall responsibility is weighing on me. Husband couldn't be better, I'm just tired. Exhausted is more like it. I get up early just to have some peace before she wakes and then it starts. Thanks to anyone listening.
(2)
Report

fligirl, my mother is zoned out much of the time. Sometimes she will sit on the side of her bed for an hour or two after going to bed. She doesn't know that I know this, but the side of her bed is completely compressed where she sits. Sometimes I peek in to ask her something and she is sitting there doing nothing. There is a picture of my father on the chest of drawers. Maybe she is looking at him.

Sometimes she will go in the living room and sit bent over in her chair looking at the lower shelf below the TV. She isn't looking at anything, but I have a feeling her mind is tumbling. I know she is having a hard time with what she is going through.

My mother gets mad a lot. There are days when she is easy to get along with. Then there are days when demons take hold of her. I don't know what causes those days. Monday and yesterday were two of those demon days. Nothing could please her and I was working myself into the ground to try to fix the problems. I finally told her last night that she was killing me and to quit it. That just made her madder. One can't reason with dementia. But it may have helped. She woke up in a kinder mood today. Maybe she decided killing me is not something she wanted to do.

Oliviagus, I was having a hard time when I first came here, too. I felt like I had to find some on-the-spot support or I was going to turn into a ball of angry fire and explode. This site helps A LOT when I am angry. I have a couple of brothers, but they are not interested in what goes on here. It is really just Mom and me. That is okay, because I don't think my brothers could handle this, anyway. They are probably glad that I am here.
(1)
Report

My first time on this site, unfortunately (or fortunately) a rough day is why I am here. I just feel so angry all the time, unable to do things that I would love to be doing. Also I have a mother who feels that this is what I am suppose to do, no thanks ever. After reading from others it is helpful knowing I'm not alone! How do you all handle family members who are available and don't help? I have a retired brother who does live out of state but feels as if he is doing me a favor coming twice a year for a week. Well, I feel better already, thanks for reading!
(1)
Report

kaz, if your coping much better now then congratulate yourself for having learned so much . my mothers ocd and craziness usedta get me bent too till she was diagnosed with terminal dementia and sent home on hospice care . most of my self education on dementia came from the various AC articles and from the rantings of people in this chat group . i chatted on here even during moms final hours . the empathy was a great comfort .
phsyc doc recently declared me to be in the best emotional health shes seen in the 5 yrs shes known me . i think im in a better place for having cared for mom ..
we took no shortcuts . i was accused of stealing from mom , trying to poison her and of being an imposter . being read up on the illness saved my sanity .
hospice even asked if i was ok at a point . i told them i read , dont worry about me -- thanks for asking tho ..
if my aunt in NH flips out on me im prepared to walk away without a word . her brain is nearly gone , anything could happen .. weve had fun for a year but i cant alter the course of a dying brain .
a little humor tho ; friend betsy stopped in with me to see edna last weekend . edna said no one told her i got married . she told betsy i was her ( ednas ) boyfriend . that was flattering i guess . one gal dont want me , another dont want anyone else to have me .. it takes a sense of humor to cope ..
(1)
Report

I hate when these old posts reappear? this was last year gosh i was in a bad way!! since things are ok mums alot calmer? i just let her be she can wreck my head if i let her but ive chosen not to let her! yeh i think you get to a stage when you let them at it BUT have your mum asessed by her doc when they refuse help sometimes you have to think of your own stress and let it go as long as they are safe and eating properly?
(1)
Report

Kazzaa, I cannot believe how similar our lives are. I had to move in with mom because I could not afford to live alone. I have a car but it does not run, am waiting for my son to fix it. I am trapped here. I have to get a ride everywhere and the only places I get to go are to the doctors and pharmacy and groceries. I don't even want to walk here as i feel uncomfortable. I am on disability and do not receive very much a month. My mom is not mean at all. She does get angry when I have to keep telling her to eat, get up, etc. She will now and then say this is still my house if you don't like it, move and this does not happen that often. I cannot and would not leave her alone if I had the money. One thing that I do not know what to do about: Mom is up laying in her bed for hours without sleeping. She then sleeps all day. I get her up at 2-3pm. Today she was awake at 5, 6,7 so I said that she should get up. She is in extreme pain and just sat at the table reading the paper out loud and giggling at nothing. Totally weirded me out. So I guess I wonder if I should just let her sleep till she wants. That is one of the things that really bother me, if I am doing the right thing or not. Thanks. Her dementia/alz is getting worse every day.
(0)
Report

Kazzaa, have you discussed this situation with your own doctor? I know what it's like to be the caregiver for parents who have dementia - and from whom there is not a lot of please and thank you. The stress is immense, even in the best of circumstances, and it can take its toll on our own mental health. I'm not saying there is something wrong with you, as your reaction - and the occasional meltdown - is perfectly normal. But it is very important that you take good care of yourself,as well as your mother.

Do you have siblings you could call? Could they help - even give you a few weeks off now and then? Do you have friends who would help out by watching your mother for a couple of hours so you could go shopping, go to a movie, go to dinner? Does your mother have a church? I found that my parents' church had a volunteer group of ladies who will come and help out from time to time.

It sounds like your mother is able to be left alone at times. My parents cannot, except for very brief errands. Take time for yourself.

But I strongly encourage you to talk to your doctor. I found that after I asked my doc for some anti-anxiety meds to help me remain calm, she prescribed an anti-depressant and it made a HUGE difference! My mother is still a pain, I just don't let it bother me as much.
(1)
Report

If mum has Dementia than she needs taken care of 24/7 Care.
(0)
Report

Kazzaa. So very true.
(0)
Report

Interesting comment made on TV here the other day by a hospice worker..... "when you start to care for your terminally ill parent you are no longer thier daughter or son you become thier carer and the parent/child relationship is lost" she says its better to have them looked after by professionals then the family can spend the most precious quality time with them as thier children. She is so right I think I would love to visit my mum everyday knowing shes been looked after and be her daughter again! Very sad but true!
(2)
Report

Skinonna, I think you're right to a certain extent... The elderly demented are a lot like little kids having tantrums...you can't really take what they're saying too personally after a certain point. It's like yeah, yeah...and you move on from there...arguing or whatever at that point is futile and serves no purpose, except getting the person even more riled up...

But Kaz, I get that even knowing that they can't help it sometimes doesn't make it any easier...or any more pleasant...to live with and deal with, day in and day out... It's like a kind of torture. I can see how people can lose their cool now and again, and get snappy and grumpy with the elderly after awhile.... I've done it, too. Most of us have. Most of the time, you're good with them... But sometimes it's really hard to have that patience, and people

People need to get out more, away more. Honest to God, I think the only solution to all the care giver stress, mental anguish, worry, anxiety, sadness, anger, resentment, frustration, etc, etc, etc, is simply a whole lot more time away. It's like another poster said on here, if she knew she would have regular time away, she could probably do what it took as long as it took...but a lot of us don't have those options... We're not saints. Sometimes we get angry, and that anger is understandable with the more difficult elderly patents...some of them would try the patience of a saint...

That's why, imo, people just need to find more in their lives that they can look forward to, enjoy every day. Time away, imo, is the key to better care givers.... care givers that DO have more patience, aren't as frazzled, because they're not working unholy and ungodly hours by themselves around the clock...

No, it's never ok to harm someone that's weak and already down...but I get why caregivers are snarling and snapping, and gnawing at their chains...it doesn't mean we don't feel sympathy or compassion, or sadness, for those we're looking after...we do...but one body, one mind, can only go so far in the role of care giver, especially if they're mostly alone in it all.. .

I'm a firm believer that no one person should ever be required to take care of an elderly alz/dementia patient alone, or almost alone, 24/7, year after year. Ever. For any reason. Not because the patient is likely to get hurt, but because their care taker is declining in the giving, and nobody should have to give quite that much.... Imo, it takes a TEAM, around the clock, to take care of them, not one person, or even two.

My hours caring for my mom were absolutely brutal. It's against the LAW for any corporation to force a worker to work around the clock, day in and day out...yet that's what WE do. Year after year. What's against the law in the real world is alive and kicking in the free care giver reality. And then there's the fact that in that role, a lot of times nobody seems to give a crap what the hell happens to the one putting in those brutal hours behind the scenes. Care givers walk on a tight rope, sky high, trying to provide what their elderly charge needs, while still retaining enough time for themselves to stay sane... There were times if I got a couple hours sleep a day when my mom was sundowning, I was lucky... No corporation would expect anyone to work those hours, and they'd be up shit creek with the law if they did...but we do it every single day.... Imagine that. I broil a little at that injustice.. about the fact that I asked everyone and their brother about getting more help, and couldn't get anymore... I'm totally against people caring for alz/dementia patients by themselves, with minimal help.... It's ridiculous to think people can just keep it up forever, as science keeps bodies, forget minds, alive longer, and longer, and longer... God, how scary.... I'm glad I won't be around in the distant future...what if people live to be 120 by then?? *shudder* Glad I won't be their care givers... Anyway, we're good most of the time. The fact that none of us has strangled our elderly charges by now speaks well of us. lol If we get snappy some days, well, nobody on this planet is wearing a halo 24/7... we're human, not machines... Stay strong, Kaz, and take that time...SNATCH that time if you have to...for yourself... It's vital to your well being, which is vital to your mom.... *hugs*
(2)
Report

When a 2 or 3 year old says mean and nasty things like "I hate you." we don't get hurt and take it seriously. If they cry and through a temper tantrum we don't take it seriously. Isn't it the same with these demented adults? I just don't see the difference. It isn't appropriate to yell at the child or the adult for saying things their undeveloped or damaged brains can't understand the scope of. So if you try to see it that way, it doesn't hurt your feelings, except for feeling bad for them for being in that state. If they had their wits fully about them, if they were thinking it, they would probably hold back the words. I'm not sure that's better.
(0)
Report

Too right SA. my cat wakes me up at 6am I let him out then go back to bed until 10am or later if i feel like it but like you I get up for the peace! my mum dosnt get up until lunchtime which is fine by me I dont know how long she will be sleeping this much but hear that they start to sleep less and wander around oh god help me when this happens.
My mum says why dont you stay in bed longer as youre always moody because youre not sleeping enough????????????? yep that must be it!
Im exhausted as im going to bed late so i can have a break from her and watch tv later then im up early to get more peace no wonder we dont get enough sleep?
Just been avoiding any crap lately cant be bothered dont feel like a daughter feel like an unpaid hired help!!!
(0)
Report

Kaz, I totally feel your sense of desperation. I get it. I'm right there with you. You will hold on, and you will make it through the day, and you will find some small time for yourself every single day, come hell or high water, and you'll be alright. You've got to walk away sometimes, just like you did. Sometimes, it's the only option. But don't just leave when you're pissed or frustrated beyond endurance, leave just for the hell of it too, to go and do one thing that you'd enjoy doing. Even if it's simply sitting outside early in the morning with a steaming cup of tea in the quiet, early morning, with nothing but the sounds of the birds and bugs around you....that's what I did almost every morning. I got up way early on purpose, just to get that little slice of peace for the day...I looked forward to that every day...and if I missed it, I was a grump, and the day impossibly long...find something to look forward to every single day...
(2)
Report

Thank you both...She does have a way with words. I had such a hard time reading the first time through the tears. But it really touched my heart for her to relay her thoughts like this. I really appreciate you sharing it. God Bless
(0)
Report

Msdaizy I love it.. I retweeted on my twitter page.
(2)
Report

msdaizy, powerful! Your daughter has a profound mind. She took me inside the mind of the person with dementia. Excellent.
(2)
Report

If I may...I would like to share something my daughter wrote on her blog. Really puts it in perspective in the eyes of the loved one suffering with dementia/alz. I'm so proud of her and her new adventure. Please share my excitement and tells us what you think. If you feel impelled to encourage her to continue, it will make her so happy.
God bless.
(2)
Report

People are illogical, unreasonable, and self-centered.
Love them anyway.
If you do good, people will accuse you of selfish ulterior motives.
Do good anyway.
If you are successful, you win false friends and true enemies.
Succeed anyway.
The good you do today will be forgotten tomorrow.
Do good anyway.
Honesty and frankness make you vulnerable.
Be honest and frank anyway.
The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds.
Think big anyway.
People favor underdogs but follow only top dogs.
Fight for a few underdogs anyway.
What you spend years building may be destroyed overnight.
Build anyway.
People really need help but may attack you if you do help them.
Help people anyway.
Give the world the best you have and you'll get kicked in the teeth.
Give the world the best you have anyway.
Mother Teresa
(4)
Report

It is hard when you find out you cannot be the perfect saintly person you always thought you really were inside, and just be all love and care and wisdom and never think a crosswise thought about the "torture" of getting yelled at and hated on while doing your best and sacrificing your own life and health. Most of us can get better at that serenity prayer stuff but probably won't acheive perfection in this lifetime.

Mother Teresa once asked of us in America, "Why are your elderly parents not staying with you?" and the answer may well be "because we are not the Sisters of Mercy whose life work it is to take care of the poor and sick, not also trying to hold down a job, raise kids, and keep the bills straight at the same time, and YOUR poor and sick probably aren't your own personal parents ungraciously pointing out every little wrinkle in your blue striped saris or complaining about how ratty your sandals are getting and how the rice porridge is always too hot or too cold!" I don't know that I could really say that to her face, but thinking back to how Mom treated me, maybe I would! Caregiver guilt sucks, doesn't it...can I pretend with you guys that I will ever get over mine?
(4)
Report

I recently had an experience similar to this. I had just spent two days taking my mom shopping (something she loves to do) and to a fair. Every meal, we ate at a restaurant (another thing she loves to do). At the end of the second day when I took her home and was giving her, her medication and getting her ready for bed, she turned to me and said "god is going to punish me because I don't take care of her." I'm not a religious person but my mother is, so I know this had some meaning to her. It put me over the edge and I lost it. I yelled at her and after I did I felt like my world had just crumbled down on me. I apologized to her, I hugged her, told her I loved her and then left. I am now finding it really hard to even go and visit her. I never want to get to the point of resenting her, but I'm finding it really hard to say it's just the disease talking it's really not my mom. As my kids watch me go through what I'm going through with my mom I am constantly telling them I will not do this to them. I have made sure I have secured my stay in a home so that unrealated care givers will take care of me knowing that it's a lot easier for them to not take things personally.
(5)
Report

kazzaa, you don't have to calm down. Vent away! What we go through is very unfair. It helps me a lot to just get mad sometimes. Getting away is just what you needed to do, so you are doing fine. It may help you to stop and think about the quid pro quo of things. You have some security and your mother has a caregiver. She is not giving you the things you need emotionally right now, but she is giving what she can in financial support. I hope it will help you rebuild your life after the accident.

There are some things I do when I get really irritated with my mother. Sometimes I go for a walk or to the senior center to work out. Surprisingly the most effective thing is to visit my rabbits, who I would never be mean to. It calms me down to realize when I realize that me showing anger would frighten them terribly.

I know exactly how you feel. Caregivers have to put up with carp that humans were not intended to have to deal with. Sometimes I find myself in the worst times just saying Frakking Alzheimer's. The disease has kidnapped our lives and is holding us hostage. And no one seems to care, because it doesn't affect them. I'm so glad you have a friend that knows what it's like.

It just occurred to me that there is really no reason their anger and demands should upset us. We should just do the things that need to be done and let the rest roll off of us. It is hard to get past the person being the mother who once had complete charge of us. If you are taking care of her the best you can, then it is all you can do. Bless you for being there, and I hope you can rebuild your life on the foundation.
(4)
Report

Yes...exactly. What Wuvicecream says....remember that this person is not the person you knew to be your mom. Also arguing seems to be a mute point. She relies on you for much more than you rely on her. At this point...try and do your best to be calm. She will feed off the anxiety. Find the little things that make her happy...and definitely take care of you. Find little moments to step out and breathe.
(1)
Report

dear Kazzaa i myself am looking after my mum dad passed on no to long ago and she is lonely and l have had to shat up my own home and live with her l send all day and night with her l love and that keeps me going, l look after dad in the last years of his life here on earth, an l'll look after her till she passes to be with him. I am sorry to hear you are at stresses door I to am at times their many times, all I can say is your not alone and that I understand. God love you for what your doing an I pray you strength in your battles ahead. We can only grow stronger by this road that so many of us carer are on
God love an keep you safe.
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Subscribe to
Our Newsletter