My mother has just been diagnosed with dementia. I've lived with her since my father died in 2001. She has never lived alone and doesn't know how to do a lot of things. We have never gotten along but I was willing to help her out not out of love but out of duty. I hate living here and to be honest I hate her. She has always been a very nasty person and lately has been even worse. She can't remember anything and gets mad because she thinks I'm not telling her things. Also she can't get words out and gets mad when I can't read her mind and provide the word for her. I hate listening to her talk and hate being with her. I have to walk on egg shells around her because I never know what will set her off and I hate to fight. Now I find out I'm going to have to be a caregiver to her as she gets worse and worse and from everything I've read she will get nastier and nastier. I've spoken to my brother about helping out and he says he has a life to live. I got mad and told him I used to have a life too and I want to have one again. The bitch is paranoid and all doors and windows have to be closed and locked at all times. She goes to bed at nine and if I open the door to let my dog out after she goes to bed it means I don't love her and she starts screaming at me. Well she's right I don't. I hate this. I hate this. I hate this. I want to live. I'm tired of having to be home by 5 because she's too afraid to be home alone in the dark. I'm tired of going out to my car and not being able to get back into the house because she has locked the door. I'm scared I'm going to either kill her or myself.

We have to see the doctor again this coming Thursday. I assume we will learn the results of the MRI at that time. Whether that will really tell us anything or not I'm not sure. I'll let you know what I find out.

You may have already sair, PL, but I don't remember - do you have any idea when you'll be receiving the news from the docs? I think you are wise to wait for the full scoop on things before proceeding... It's always better to know what one is dealing with before making plans, etc.

I SOOOOO hope your Christmas plans work out - what a fantastic present that would be for you to have a week off to yourself!

Good luck! I hope your days & nights will be peaceful with her until then...

Thanks for the encouragement. I really want to wait for the full diagnosis before I do much of anything as right now we have no idea what we are and will be dealing with. I am looking into getting a Dpoa and Poa, I spoke to my brother about it but he doesn't believe mother is bad enough to do anything like that. He has agreed that she will come down to his house after Christmas so we will see what he thinks after he has had to deal with her for a week or how ever long she is going to be down there. I'm hoping for at least a week so I can decompress.

Forgot to say....
Some AL places have LONG waiting lists, you may want to get your mom on one and you don't need any POA or Guardianship to do that. On the applicaiton under those questions you just write "pending". This gives you time to work it out. Sometime call one and ask for a tour. That in itself may answer some of your questions about if it is right for your Mom. Our AL place was a HUGE relief for us.
~Hannah

Pilotlady,
I think I have a major thing in common with you. I don't like my Mom either. I love her, feel responsible for her, feel guilty if I even THINK about not doing something for her, will never EVER neglect her, but I don't like her. We never had a good relationship; history of emotional, verbal abuse and manipulation. With a parent like that you spend years and years trying to assert your own life and survival and identity.

THEN along comes dementia. For my Mom it is Lewy Body Disease (dementia, hallucinations and tremors) and she is only 65 right now! I tried having her live with me and it was awful. I'm sorry to tell you this but sometimes the negative traits in a person just get worse because their sense of restraint disapears. I HAD to get her in assisted living for my own sanity and survival. She initially cried, was mad, made me feel horrible. But after about a month she actually LIKED it there. Thank God for all of us! It is her place, her rules, her stuff. The smaller space is comforting to her because she can 'control' it better. Trust me there will still be caretaking for you to do with her in assisted living - taking her on outings, getting her clothes and bathroom stuff, visits...But at least you can go home and BREATHE in between. And yes meds do help too, but not enough to make your life with her sweet and rosy, but you need a good diagnosis.

Your Mom, is not in her 'right mind' (I know some won't like that term but I can't think of a better one) anymore. Her measurable IQ (part of the neurological) will show you just how diminished she is. So for you to be forced to keep windows closed for her is not even remotely logical is it? We do these things because we are still in the Parent/Child dynamic. But you are not there anymore, you are now the Parent and she is now the Child.

IF your brother gets a POA, be sure he takes on the rest of it, or insist on a joint POA if he won't so you have some say too. Some siblings get the signatory rights but still expect YOU to carry out all the actual work. I would urge you to get a guardianship instead of a POA. My brother and I have a co-Guardianship in which either of us can make a decision and it doesn't have to be unanimous. I am a court visitor and Guardian Ad Litem myself and I can tell from your description of her neurological that she would very likely qualify. It wouldn't be up to her - it would be up to the court. The court then becomes the 'evil child' not you. All decisions are then yours to make, not hers. A POA is very limited if the person is uncooperative. Don't wait for your brother. You are the caregiver YOU can do it.

I would email him and say, here is what I am doing and why. If you would like co-Guardianship with me, please call me by.... If he disagrees the other option is for him to be the caregiver.

With financial; in my Mom's AL they 'preferred' we pay privately for one year (her funds not mine - again by order of the court) and when she is out of money Medicaid will pay for it if you have a Dr order recommending it for her health and safety (the neurologist writes this in his recommendations for placement). You don't even need a social worker if you go to a lawyer who specializes in Guardianships - and most will do a free initial consult to answer your questions. In my state the estate of the person in question pays all legal fees, and they weren't much at all.

This is getting long, I feel your pain as Clinton liked to say But seriously it is ok if you don't like this and don't want to do it. You aren't a bad person. THIS DOES NOT HAVE TO DEFINE YOUR LIFE.

~Hannah

Kathy, vent all you need. If we can help in any way, you know we'll try!

It sounds to me like your mom has been suffering from the slow onset of dementia or AD for some time...

You really got sucked into a difficult situation, huh?!!! Hopefully, when you get the results of the MRI (which will not show AD, but will show strokes & mini-strokes), you will have more information to take to your brothers tso they can be involved in making decisions for your mother's care... Please don't let them shove all this on you! The quick in-office testing that you previously described shows there is something radically wrong... If the MRI shows nothing, please ask for an in-patient geriatric psych evaluation (have the doc "sell" it to her any way he can...). Once you have a good, solid diagnosis, you will have a better idea of what you are facing, but even without it, the handwriting is on the wall - you're worn out and on your last nerve! Just because you are single and female does not mean you get stuck with giving up your life to care for someone with whom you feel uncomfortable. You have a life, too, even if you didn't just have a new baby and aren't the VP of a company!! It's the only life you have, so don't let everyone else spend it for you!

Good luck with the MRI tonight!

When I first moved up here and in with her my father was in a hospital 600 miles away after he had collapsed in a Burger King. She did not want to stay down there but needed to go back and forth so I came up here temporarily so I could drive her back and forth. It fell to me since I was single, did not have a job due to disability and my older brother was Vice-presiddent of a company in Texas and my younger brother (who is smart and has nothing to do with my mother) had just had a baby.
2 months later my father died. My mom went into a depression and just sat around and looked out the window. She didn't drive, (had a license but hadn't driven in years), knew nothing about repair and maintenance of a house etc. My father had been one of these old time husbands who took care of everything. So I stayed again for what I thought would be a short time. Mother seemed to be fairly normal back then. I managed to get out and about so I wasn't stuck with her all the time. She has always been very controlling, inflexible. (Has to eat and exactly 5pm not a minute before or after, has to go to bed at exactly 9pm, has to go downstair to walk on the treadmill at exactly 7am etc) I tried to get her comfortable doing some driving etc. But slowly I noticed that she wasn't able to do much for herself. I thought at that time that it was still depression. I talked things over with my brothers and decided I needed to stay for good. I still felt it was only semi permanent because I really expected her to die soon. Over time I noticed her memory going, her temper (which was never good) getting worse and she was having trouble getting words out. I did some checking and tried to get her to do some exercises for her mind. (crossword puzzles etc) Everything was too hard for her, but at that time I really thought she was just being stubborn. I noticed she was scared of everything and tried to get her to go to the doctor but she wouldn't go. She hadn't gone to a doctor in 30 years or more and wasn't going to start. Mostly she just wanted to sit around.
A few weeks ago one of her friends told her she should go to the doctor for her inability to say words, she was willing to listen to her so we made an appointment for her. She promptly forgot that the friend was who had convinced her to go to the doctor and it became my fault that she was going.
She really isn't that bad off yet. Mostly memory and talking. I still can get out of the house and I do otherwise I would have gone crazy by now.
Yes I know I need to look into her finances but I'm not sure how to do that if she refuses to let me. I'm afraid she will think I am doing it to steal from her. Once I find my older brother I will see if he can get her to let him look at the papers. She is much more likely to allow that. She doesn't think I am capable of doing anything so she wouldn't trust me.
Like I say we go in tonight for a MRI and have another appointment with the neurologist next week so maybe by then I will have a little idea exactly what I am dealing with. Maybe with luck it will turn out to be a reverseable form of dementia.
I'll get through this is I can rant and rave here. I just have no where else to vent. So thank you all for being here.

Kathy
A friend of hers

PL, sounds like you don't know much about your mom's affairs. Start with her pension(s) - is she on SS alone or does she have benefits from your dad's retirement, military service, etc.? If she is living on SS alone, does she have insurance other than Medicare? Is she eligible for Medicaid? I know these things are mindtwisters, but regardless of your mom's diagnosis, this is stuff you and your bro need to know about for her future. You should NOT have to nor be responsible for paying ANYTHING for her care... if her finances are insufficient, then that's where Medicaid kicks in.

I am sorry you haven't been able to contact your bro... I know you are worried and it must feel very lonely to be in your position with all of the worries and none of the answers and no idea where to begin. When Mom went in for a 10 day in-patient evaluation, a lot of specialists did their tests and stuff. Then they all got together along with the facility's social worker to present their findings to one another, arrive at a diagnosis and recommendations for treatment and care. The social worker is included to help with making sure she has a home available to her that will ensure her care. They also make recommendations and arrange for equipment, etc. so they have a big role to play in the teamwork. There are folks out there to help you figure this out even if your bro decides to be unhelpful. Remember: a POA is a limited power that can be revoked easily and is usually pretty specific for only business matters. For health care decisions, a Durable Power of attorney is needed which encompasses the POA and adds the medical stuff. Because it goes into effect when a person is unable to make medical decisions for themselves or when it is signed (depending on the wording), it is far less easily revoked by a mentally unstable person. Generally, a DPOA is needed by the person who will be either giving care or overseeing athe care of another locally. If your brother is some distance away, it would be awkward for him to perform the duties required unless he were to move her to a facility nearer to him (wouldn't THAT be a BLESSING!).

Honest, it WILL be okay, but you are going to have to be very assertive about the fact that you will not continue living with her and caring for her as her condition is beyond your ability to cope with on a residential basis. As I said before, even under IDEAL circumstances, living with someone with dementia is VERY trying... we joke darkly about it being catching... ...at least I HOPE it's joking...

Read up on what legal things you need to get in order... You'll need to know the answers to a lot of questions and somehow she doesn't sound like she will be very cooperative if you ask her... Make a list and start going down it... her assets are:___ her income is:___ her home is worth:___; her car is worth:___ etc. Go down the list and try to fill in as many things as you can. Check the laws in your state regarding qualifications for Medicaid - what are the income & asset guidelines there? Calling your local Counsil on Aging should help you with this... they can give you phone numbers, brochures, lists of sitters in your area (no references - just a list), and other valuable eldercare services and options. If you have no place to go and her home was to be left to you or something, be sure to check into how this has to be done legally; some states are more lenient than others...

In short - the handwriting is on the wall. You can't go on with this and other solutions must be found. Don't wait for your brother to notice that you are one hair's breadth away from the funny farm... outta sight, outta mind, yaknowhutImean? Instead of reacting to this situation, take a proactive stance and get all her information together and then sit down with whomever you need to to take charge of your own life. Wouldn't it just frost your cookies to find out that she might have been eligible for in-home care all these years that you have been suffering through this?!! Get answers! Eventually your brother will have to come home and you can present him with what you know and what needs to be done... If he's the Golden Child, GREAT!! Let HIM be the one to "sell" it to her... that's the price for being the Chosen One instead of the Evil Spawn who cares for her day after day after day...

Buck up! Your back is to the wall and you are ready for change! Go for it and anytime you need, we're open here 24/7!

You are about to explode here pilotlady. I know only too well how you feel. I too had an immensely difficult time with giving up my life and moving into my folks home. I’m a single woman too, was positive that I’d be married again by now but my dreams and other aspirations are just that….dreams and aspirations….for now, anyway. The big difference between you and I is that I love my mother but we’ve always had a very volatile relationship. There’s noone in this world that can push my buttons like she can. There’s nobody in this world that can annoy me like she can. The woman drives me nuts but there’s also noone in this world that comes close to the love I hold, exclusively for her. When I’m intensely enraged with her though, (or I should say, when I “was” intensely enraged with her except she still even today, pushes those buttons), this woman who I love becomes this whench who I fantasize about throwing “mama from the train” character and I clearly can’t stand her…temporarily. I care for both my folks PL. My father is gravely ill, my mother is declining rapidly and both are incapable of taking care of themselves. My home was packed up and put in storage in August ’05 and since then, my life has completely changed with no reflections of my life as I knew it before I started caring for them. I too am on my own here with a brother who, not only lends no support whatsoever but also bleeds on me whenever possible.

When you originally moved in with mom, was it because she feared being alone? Was there any caregiving involved then or was it primarily because she had a hard time being alone? Before she started showing any signs of something not right going on, is it correct to assume that you both then had your own lives independent of each other but shared the same dwelling? How was this arrangement for you before you got hit with a look into the future as her caregiver? Did you feel stuck then or just since this recent diagnosis? There are solutions no matter what the situation is on your end. She was probably very needy before she got sick, huh? After you (hopefully) admit her for a thorough evaluation as MB recommended, why don’t you look at all the alternatives a social worker will offer (as BG suggested to you) and possibly consider full time in home assistance? It would give you a chance to let loose from your mothers grip while preventing her from the shock of having her life swept under her feet, in new surroundings at an ALF. To slowly let go may be easiest for you to get used to before you consider other alternatives and while your mother still has some wits about her; she wouldn’t feel so alienated from her life as she knows it, while she still knows it.

You are definitely in the right place here PL, that I promise you. As Mae said, we all understand, only too well, we all understand what you’re going through. Keep posting!

quote-"Doing your duty" for Mom does NOT mean you have to perform hands-on caregiving. Please arrange for her care in some other way. You don't have to read far to know that arranging for care in a decent facility is plenty of responsibility! I don't think ANYONE should be EXPECTED to give hands-on care in the home for ANYONE! -Unquote

I do need to look into what can be done. Unfortunately I can't seem to get ahold of my brother. Maybe he is on vacation or something but nobody answers the phone and I haven't gotten an anwer to my emails. He lives 100 miles away so I can't just drive over there and see if he is around.

Quote- Do either of you have her DPOA (Durable Power of Attorney) so that you can make medical and other business decisions for her? , the TWO of you need to talk with an eldercare attorney who can explain stuff to you.-Unquote

As much of this has just come about we/I haven't really had time to look into what can be done. I'm sure my brother will be able to talk her into giving him power of attorney as in her eyes he is and has always been "the perfect son, almost godlike" Unfortunately I won't be able to talk her into anything because I have alway been "the evil child". So I have to wait until I can get ahold of my brother.



Quote-Obviously, she cannot live alone, so she either has to go to an ALF (assisted living facility) or some other residential place that can handle the care that she needs. Does she qualify for in-home assistance?-Unquote


I don't think there is any way I can afford to pay for assisted living but admittedly I have't checked yet. I need to check into her insurance to see if it will cover it at all if the doctor should say she will need help. I'm assuming to get insurance to pay I would need a doctor's statement. I am living on a small disability payment so I don't have the money to pay for it.

Pilotlady welcome in...sorry for what you are going through. Its a tough job for those of us who care about our charges but when the feelings are like yours...whew...not good, not good at all Baby.
Mae asked the obvious question here so heres my question.
Must you be the one to care for Mom here? Could mom be placed in a assisted living facility? Have you looked into the options yet?
Start first at getting her diagnosed then get a Medical Social worker to help you figure out your next move. They will assist you in finding a solution here that works best for everyone, they can look into Moms insurances and income to figure out if an ALF or NH is possible for her. Your brother well been there done that and still continue to hear that same old song and dance from alot of people your definately not alone in this sweetie.
For now Baby Im gonna go out on a limb for a minute ok.... when things get stressful for you (I know thats most of the time) walk away into another room and just breath because the more irritated you get the more she will become irritated, agitated and angry...she is no longer a fully functioning adult here. She may not remember what happend 5 minutes ago but you and her have a history here that spans a lifetime this is what she is remembering but you cant fault her for this now her life is slowly slipping away sweetie and there will come a time in all this that your going to have to make peace with it all. Take the time to think about this baby, life is too short to be filled with all this hate for a person that can no longer make amends for something in the past, you never know what moms intentions may have been this disease has stolen her only chance away to tell you what an incredible daughter she has in you...after all look at who is standing by her side right now....You.
No matter what you think this is all about I know deep down inside there is a place that is reserved for your mom...this is about the hurt you feel...Ive seen this way too much baby if this was truly hate you wouldnt be here right now....find your real truth her sweetheart and acknowledge it before you regret this all later.....
Again welcome in

quote:

It scared me to death to see how bad she was and to realize I was going to have to deal with it. I realize that we don't know yet what the problem is or if it can be treated. But I'm terrified, not for her but for myself and I know in most circumstances I can't say that because people who think you have to love your parents wont understand.

Welcome. Pilotlady. I think that folks who have gthe greatest relationships with their loved ones can MOST understand how you feel! My mom is my friend and I love her a lot. This caregiving is difficult enough. I cannot imagine doing what I do for her if I didn't feel that way! There are folks here who do care for people they don't like... HOW they do it is beyond my understanding. That's a calling I am pretty sure I would find difficult to undertake...
I think if I were in your position, I would need the Depends before my afflicted relative because I would be fillin' my britches at the THOUGHT of caring for someone I didn't really, really love! "Doing your duty" for Mom does NOT mean you have to perform hands-on caregiving. Please arrange for her care in some other way. You don't have to read far to know that arranging for care in a decent facility is plenty of responsibility! I don't think ANYONE should be EXPECTED to give hands-on care in the home for ANYONE!

So you AND YOUR BROTHER have some decisions to make regarding her care. Do either of you have her DPOA (Durable Power of Attorney) so that you can make medical and other business decisions for her? Time to get those legal ducks in a row regardless of her diagnosis: she's old and stuff happens. Someone needs to know her business inside and out and be willing to take care of her business ethically. She will have to designate that person. If you haven't already, the TWO of you need to talk with an eldercare attorney who can explain stuff to you.

Obviously, she cannot live alone, so she either has to go to an ALF (assisted living facility) or some other residential place that can handle the care that she needs. Does she qualify for in-home assistance?

You and I have been living with our moms for about the same time. Bless your heart, the only REAL mistake you made was moving in to begin with! I know how long these years feel to me - I can't imagine how they must feel to you!

You gotta take the bull by the horns and say NO. This is SOOOO not fair to you and there ARE other viable solutions! Seek them out! It would be good if you could request an in-patient geriatric psych evaluation so that an entire team could evaluate her over a period of time and properly diagnose and recommend care solutions to you when the results of their findings are all put together... and also to give you a small respite and to give you and your bro a little time to talk to folks in-the-know and decide what to do about Mom's care. It shouldn't fall to YOU and it does NOT have to! This is your chance to pass the torch to others better equipped to handle her needs - that is certainly not always US!!! Don't miss this one! When the docs tell you the diagnosis, TELL THEM you cannot handle caring for your mother and ASK for other solutions.

Best of luck for early release! You have done enough, dear.

The test you are speaking I am familiar.My husband and mother had it so many times.I began to know it by heart.
Sweetie, no one comes here to condem you for how you feel.Those feelings are your to have and understand.Do not fear anyone judging you.Everyone has differnt opinions on many subjects but that had nothing to do with a persons individual thoughts.I had a friend who had a very bad relationship with her mother in law.Being a kind and compassionate person she wanted to give her mother in law quality of life.She soon discovered she was unable to do what was required as she could not get past the way she had been treated.She did what she new what was best for her and all involved.So know you are not alone.

My mother goes in for a MRI tomorrow night. We did see a neurologist and he gave her some verbal test. I was appalled at how few of the things he asked her she could answer or do. I knew she had a problem but did not know it was as bad as it appeared at the doctors office. She could not draw the face of a clock, could not put the hands on it were they belonged. did not know how many states there were. Could not understand taking a peice of paper from the nurse, folding it and putting it on the floor. Could not follow instructions for pointing at the ceiling and floor. Did not know what a calculator was called. Could not remember what it was called even after she had been told. I bet she got closed to 90% of the answers/actions wrong. It scared me to death to see how bad she was and to realize I was going to have to deal with it. I realize that we don't know yet what the problem is or if it can be treated. But I'm terrified, not for her but for myself and I know in most circumstances I can't say that because people who think you have to love your parents wont understand.

pilot lady, hello and welcome.You sound so over whelmed.May I ask if your mom has been evaluated by a neurologist? If not, to have this done may give you an insight to some of her behavior. Having dealt with dementia with my mother and now my hubby, I can tell you it helps to have some idea of the causes and affect.There are meds that can control the symptoms and still give her and you quality of life.It is an overwhelming task caregivers face.It is not easy to feel your life is passing by with no meaning.
Is there anyone who can give you time for your self?
When we feel trapped and have no control over our lives so many emotions come to the surface.I agree with you that your feelings may cause you to act in a matter that will not serve you or mom well.I so wish the churches would become involved with those who need time to gather their thoughts and have just spontaneous time.That use to be a big part of many communities .If you read other posts you will find others who are having your feelings.Many just need a place to vent so everything does not stay bottled inside.My days of care giving is better now but I had times when I thought the world was not mine to enjoy.Is there any way you can speak to a professional about your relationship with your mom and the deep fells you have?Many times they can give you a good perspective.When we have the stress and anger each things becomes magnified..To feel trapped and have no one to turn to for help only adds to the mixed emotions.I came to this forum at a very difficult time in my life.It is not the same as the physical presence of a person but it is very close.Give the ladies time and they will address your feelings.I see your mom has been diagnoised with dementia.Was she prescribed meds ?If so how long has she been on them? Also , you may find that the meds prescribed do not always work for everyone.They try to lump all meds to all people and that is not the way it is