Besides my 2 adult daughters who have their own lives to live. there is no one to help at all. My mother has no family besides me and my kids. I am an only child. I love my mother, but I am at the end of my rope. When I dropped her off today at her house I was crying on the way home, begging God to either take my mother or to take me, because I cannot live this way anymore.
If I had a choice I would see my mother once or twice a week tops. I don't have a choice as she is very demanding and does live along and does have dementia and doesn't drive and is disabled (bilateral hip implants and walks with a cane). My mother feels it is my duty to care for her. I know that it is my responsibility to help her and to be with her as much as I can but it is emotionally killing me.
Because she has dementia she can't remember from one day to the next. She is very demanding. Just take today for instance. She likes to go to the movies every week. She hates most of the movies we go to, even when she picks them out. She refuses to wear her hearing aid so she complains at EVERY movie we go to that she can't hear it. When I say to her that it would help if she wore the hearing aid, she gets angry with me. After the movie we went to IHOP and in traditional complaining mode, she complained that the tea didn't taste right (the exact same brand she has) and that the ice cream was too hard and that the pancakes didn't have fruit in them (she didn't order fruit in them). Everytime we go out to eat she ALWAYS complains about EVERYTHING and says she "never wants to come back here" again. There are only 2 places out of about 30 that we go to and we don't like those places. Sorry.
While we were eating, I asked her about a letter she had received from an old friend of hers who has dementia also and lives in nursing home. She insists that this woman is dead (her husband died about a year ago but she is very much alive, just in a nursing home). My mother insisted again that she was dead. She said someone else had written the letter. I told her that she was alive and she got very angry at me. I said to her "hey mom, you keep saying she is dead and I tell you every time that she is alive. What do you want me to do next time you say she is dead." Idiot me expected her to say, "I want you to tell me the truth". Well, she didn't. Instead she said "I want you to stop arguing and disagreeing with me." Are you f-ing kidding me? She really wants me to not say anything to her when she says that her friend is dead and starts crying about her. Are you kidding me????
I am not allowed to see a movie without her. I am not allowed to go on vacation without her. Do I see movies without her? yes. However, "sneaking" away for vacation is so much harder.
I am forced to see her on Mondays, Fridays, Saturdays and alternate Sundays. I hired a caregiver on Tuesdays, Wednesdays, Thursdays and alternate Sundays. She does about 17 hours a week and I do about 17 hours a week. Yes, the caregiver has helped somewhat, but my mother is still driving me crazy. Her whole life revolves around me and she is emotionally strangling me to death. She has no problem if my kids want to do anything without her but pitches a fit if I dare to do something without her.
Growing up she was the same way with my dad. She would complain that he was exercising or taking a class at college when he retired because "he doesn't want to be with me." Yes, it sounds like deep emotional abandonment issues. I am not a heartless person. I feel so very sorry for my mother. She has been through hell and back but I cannot go on like this as I am being dragged down into the misery.
I hate being with her. There, I said it. I am a lousy excuse for a daughter. If I truly loved my mother I would want her to live with me, and I would want to be with her all day long every day. I would rather shoot myself than have her here more than she already is.
I guess if her attitude was a little more positive, it would be easier. But someone who refuses to wear a hearing aid and makes me repeat things twice. Someone who demands that I don't tell her that her friend is alive. Someone who demands that I spend time with her because she is "alone and lonely." I am ready to hang myself.
I have encouraged her to participate in senior related activities and she won't. I have begged her to contact her neighbors but she refuses as "if they wanted me they would knock on my door.
If I had a gun right now I am scared to think what I would do with it.
She is already on a ton of meds including an antidepressant and two memory meds. Every time I am with her, I feel my happiness draining. I am not allowed to disagree with her. Today she asked me when we had to pack to go home. We haven't gone anywhere! when I told her this, she started getting upset with me again. There is nothing I can do every to make this woman happy except to agree with her even when she is wrong.
PLEASE give me some advice. I am at the brink. Than
I know you feel at your wits end; I've been there and get there everytime I visit. I try to disregard her delusions, untruths, paranoia and accusations as much as possible. I just visited this week and have to hear her ask me about a "new husband"; or my living in her town or working in her town (non of which is true; honestly, I don't know where she has gotten this stuff; but it has been ongoing for over a year and she can't seem to reset the loop). I try correcting her, then ignoring it. I admittedly snapped this week and made her look at me and told her I didn't know of XXXX and we weren't married; and that I wanted her to quit asking me about him (imaginary person) and to stop telling others about him. Not that it matters and everyone knows the truth; but honestly, it just got to me and I decided it made me feel better to confront her about it. I know it won't change and next time I see her, she'll recount "her truth" all over again; but I felt better for the time being.
Don't feel guilty about wanting it "to be over". We all do. This is unchartered territory and no one thought we'd be sandwiched in this. Science continues to help us live longer -- but with what kind of quality? Someone mentioned earlier, this generation doesn't understand caregiving, SL, AL, skilled nursing care, etc. -- our parents didn't deal with it; their parents lived shorter lives or were in a NH -- and they don't want to give up their independence.
I've rambled. You will need to set boundaries for your sanity. Please don't go over to see her angry or exhausted -- you won't do either of you any good. Don't force your daughters either (its even more scary for them). Consider taking her to Senior Center (or sometimes they have bus service and will pick the senior up) for one extra day or two mornings; consider checking with your church/mothers church to see if they have some "visiting companions" that will stop in and visit your mom once a week or so.
Keep coming back for support or to vent. Give yourself a break and if you need to; make up an excuse and tell your mom you aren't feeling well and give yourself a few days off.
i think geewhiz gave you some great advice. do not try to correct or rationalize, its asking for the impossible out of a demented mindset.
ill give you another piece of advice ; take control. dont ask her shit, tell her how its going to go down. ie; " im not coming back till thursday " . that leaves no room for argument or discussion. i know this approach sounds bully-ish but your clearly at wits end and dont deserve to end up sick or dead because your mother is and probably has always been an argumentive prick.. people will only push you as far as youll let them. its the first thing i had to learn when i went into business for myself. one sign of weakness and you are toast..
You will still visit and be her advocate but have the time to take care of your own health and wellbeing. There should be no guilt or feeling of failure. You are doing what is best for both of you now!
Good luck and God bless!
Don't backtrack. Sounds like people are making you feel guilty. Don't cause we all have our moments, days, weeks, etc.. of feeling just as you are venting. And that is just that..venting..we are all doing the best we can in an unfamiliar situation. Yes, education is helpful but here on this blog where the real world exists helps the most. In the past nine months I am learning to deal with my mother's dementia that I didn't know existed until I moved close by.
I have been thousands of miles aways for many, many years from my mother and now thinking I would have some very special times with my mother in the years before she passes has warped into to something so very different. Which is what I am dealing with and how to prepare with the future without wanting to shoot myself and my sister who will not deal with reality.
Anyway hang in there, you are not alone, keep posting. Your feelings are valid.. but it is an education to understand if only to keep yourself sane.
But I'll also warn you that dementia may rob a person of the ability to continue with interests from their past. A shortened attention span may make watching a long sports event impractical. Physical limitations may prevent former activities. Someone who sang in the choir may no longer have control of her voice. Dementia is a cruel, cruel, disease, and I'm not sure there is any way to prepare for it.
But expanding your own world and developing new interests will be very beneficial as you age if you don't develop dementia. And it could possibly help if you do. I'd say that's a no brainer. Go for it! :)
This really makes me want to have more friendships in my life and more interests and join book clubs, pottery class, parachute jumping class (okay, maybe not the last one!). If I only surround myself with my kids, this could quite easily be me in a few decades. No friends. No life. No one. Just my kids. I hope I never become so overly dependent on my kids that they come to one of these sites for help!
Do you think those things would have made a difference if my mother had expanded her world beyond only my dad and me. Or do you think that with dementia, they push all others away except family? I don't know as this is obviously not the case with my mother as she only wants me. But I was wondering if all elderly people with dementia become overly dependent and emotionally strangling?
It depends on the context, but I'd say, yes, it is very common for a dementia patient to get angry or depressed or anxious when told a truth that contradicts something that is part of their current reality. (Which might be different tomorrow, by the way.) On another board I belong to we have two members who are in early stages of early-onset dementia. They are both highly intelligent and still able to articulate their feelings and insights. Both have written about this. They know their world is spiralling out of their control. They know that they can no longer trust their own senses or perceptions. And when they think there is something they know they don't want a loved one to shatter that knowledge. They can't stand arguing. They need to be right about SOMETHING. The woman reports talking to her husband about this and apologizing for how strongly she depends her "truth" even on trivial matters. He says he understands and is not hurt by it. Dementia patients need someone in their lives strong enough to set aside "the truth" and enter into the patients' reality, at least briefly, in emotional or volatile moments.
And yes, I do mean to tell you that if Mrs. Smith is dead in her reality don't argue about it. And if she thinks her deceased father is sitting at the kitchen table giving her advice, don't try to talk her out of that, either. Arguing isn't going to change her mind and it undermines her confidence in your love.
I might, at some later point, strike up a conversation about Mrs. Smith. Talk about something in the past that you remember about her. Then say, "I think she is at Shady Acres nursing home. When we are out today, let's pick up a greeting card for her." If Mom still persists that she is dead (she may have forgotten that belief), you can say, "Oh, maybe my information is wrong. I knew that Mr Smith died, but I hadn't heard about Mrs."
Your situation is greatly complicated by your mother's long-term behavior patterns. But just because she had one kind of relationship with your father does not obligate you to fill the same role in her life, with or without dementia. Be kind, be loving, and be firm. You will see her on Wednesday. No, you can't come over today, but you will see her on Wednesday. Unfortunately it may be nearly impossible for her to "learn" that you mean what you say, depending on how advanced her dementia is. But you can learn. You can learn that she doesn't have a gun or the power of arrest. You can learn that you are never going to be able to satisfy her need to have someone else give meaning to her life. You can learn to say no and do no, and to set boundaries.
The financial aspects of this are tough. She needs daily care. This need will increase as the dementia progresses. You say that she cannot afford daily care. Then she should be able to qualify for some financial assistance. Get a case worker involved and research her options for her. Maybe she would be better off in a care facility of some kind. Maybe she will qualify for a program that helps seniors stay in the community. But do your homework and I think you will discover that she has more options than to throw herself on her daughter's mercy and by hook or by crook or by guilt get said daughter to give more of herself than she reasonably can.
This isn't easy, and I'm not criticizing you. I think you might be a little too close to the problem to see it clearly.
Something happened with my mother this evening that made me think of you. She told me that the BBQ ribs I had bought for lunch were too tough and she didn't like them. She said that she would have much rather had the chipped BBQ. I said, "But, Mom, the last time I bought the chipped BBQ you said you didn't like it and you would rather have the ribs." Of course, she denied saying that. Sometimes there is no winning.
I'm glad for this thread because it made the rib incident funny. I go through this with almost everything I buy or cook. My father would eat only sweets if he could and my mother would eat only fried chicken. Reminds me of getting young kids to eat what they should. (My father throws his away when he thinks no one is looking.)
What the hell is it with dementia? Do all dementia patients get angry when they are told the truth? I wonder. Yes, my mother has always been a "don't you argue with me" type of person, but then when told the truth she would back down with a "well okay" but unhappy that she was corrected type of mindset. But now it's a "don't you even dare to argue with me. I know the truth."
As far as "having" to see her so much jeannegibs I just had to laugh when you said is my mother waiting for me with a gun or going to have me arrested (thanks SO much for the giggle. I truly needed it). You're right. Those things won't happen. The problem is that she has made me her ENTIRE EXISTENCE (before me, it was my wonderful father while he was still alive). She hates being alone, complains of being lonely CONSTANTLY, says that there are days when she doesn't see someone (untrue. I make sure that she is with either me or the caregiver every single day. There is never ever a day when she is by herself). She has NEVER been a person who is okay by herself, ever. She always has to be around other people. i.e. me.
I cannot pay the caregiver, or any other ones, more money, as it is already quite expensive. Therefore, my only other option is to either a) beg one of my daughter's to spend time with her (I did yesterday, but she doesn't want to. Sad, but I probably could "make" her to do it to give me a break. Should I?). or b) leave her in her house by herself with no way to get out as no car, and no one to be with as neither the caregiver or I will be there. Her day will just consist of her being lonely, lonely, lonely (the same mantra I hear twenty five times a day from her), probably not eating and calling me non stop to tell me she is lonely and asking when I am coming to pick her up. Sure, I could not answer, but I'm always a little scared as she could fall. It's not like she has anyone else's number to call in an emergency.
To other people out there whose loved ones have dementia: is the constant whining of loneliness dementia related or do you think it's my mom's needy personality?
Thanks so much. You prop me up!!
I suggest that you do a little reading about dementia and about how caregivers can more effectively deal with some of the behaviors. Your mother showed a lot of insight when she told you, "I want you to stop arguing and disagreeing with me." Generally dementia victims don't want or need "the truth." They need to be accepted and loved. And if you could convince them of "the truth," they wouldn't remember it tomorrow in any case.
I think it will be easier for you to not take this struggle personally if you realize that these things your mother does are very common among people with dementia. Her life-long personality also factors in here, of course, but she has a disease. She can't help many of the exasperating things she does. Joining a caregivers' support group can be a life saver! (I speak from experience.)
For many months my husband (age now 85, Lewy Body Dementia) repeatedly packed his bags to go home. He'd ask when the taxi was coming, or when our train left. We were home. This was early in his dementia and I hadn't learned enough about it yet to realize this was very, very common behavior. It drove me nuts. If possible, this is another topic not to argue about. "I don't think we can leave just yet, Mom. We are expecting our clothes to be delivered from the cleaners first. Let's play a hand of Merry Widow and have some ice cream now."
About the complaining ... I'm not dealing with that, so I'm guessing, but really, her world is NOT right. She can't remember. She can't drive. She can't control many things she used to take for granted. It is frightening to be alone, and yet being with someone doesn't make it all better. Maybe that is why the tea tastes funny and the ice cream is hard and there is no fruit in the pancake. She can't articulate well what is really wrong with her world so she picks on everything else in sight.
You say you have no choice. You have to see your mother more than the one or twice a week you'd prefer. That struck me as very strange. What is forcing you to do this? If you chose to see Mother every Tuesday and every other Sunday, who is to stop you? Will the law show up with a warrant for your arrest? Will a thunderbolt strike you when you step out onto the street? Will your mother have a gun trained on you when you next walk into her door? Maybe she'll complain her addled head off, but she does that all the time now, and you live through it. She pitches a fit if you so something without her. So? And how does she know what you have done without her?
I think it will help you immensely to
1) learn about dementia.
2) take control of your own life and actions. Realize that you don't "have to" do anything with regards to your mother, except see to it that she is safe and adequately cared for. Chose how much time you want to spend with her, and what you want to do with it. And your perception of the experience may change, as you learn more about the disease she has.
You are not a lousy excuse for a daughter. You are obviously a kind and dutiful woman who is in over her head dealing with a cruel, confusing, and devastating disease that is taking your mother away from you.
Best wishes to you are you struggle on this very heatbreaking journey you never signed up for. May it help to know that you are not alone, and that in fact the road is getting crowded.
I read an article once about validating a person's thinking that has dementia. In the case you mentioned, maybe saying the friend was still alive, that it was the husband who died, would help her redirect her thinking. It would have given her an "out" to explain why she thought her friend was dead. When my mother is wrong, my first impulse is to correct, but then I think about it not being about who's right or wrong. That really never matters. It is about helping her deal with the dementia that I know will become worse.
Taking care of elderly people is very difficult. Sometimes people have said to me that it must be like having children. I want to laugh and tell them that yeah, it is like having 150-lb children that wear huge diapers and you have to call 911 when they fall down. People who haven't been a elder care giver have no idea how hard it is to watch as our parents decline. For me, I am always trying to recreate the mother and father I knew. But I know these new people are the same ones, only older and meaner and mighty unhappy.
If you are on the brink, it may be a good time to take a break. Could the person that helps you take your mother extra hours for a couple of weeks so you can have some time for yourself? The care giver is just as important as the one cared for. Do what you need to do to make your life better and to get your blood pressure back to normal!
About the gun thing -- I've had visions of what I would do to myself, but they weren't serious. It is just a way of relieving frustrations. If you ever have serious thoughts, it is definitely time to get away.
About the complaining -- I have never figured out a way to make some older people stop complaining. My mother complains from the moment she gets up to the moment she goes to bed. I wish they would come up with something that would cure complaining.
As far as the hearing aids go, can you bring them with you and just before the movie begins hand them to her. Tell her your friend/neighbor/co-worker saw the movie and said it was hard to hear it.
My cousin once said that as we age we become more of what we were/are. More pleasant or more cantankerous. I'd suggest that over the next few months, you bring the caregiver in more and more. Make arrangements ahead of time w/caregiver but don't mention it to Mom til the last minute. For example. Saturday evening call and tell Mom you have a terrible whatever (headache/stomach ache/flu) and you don't want her to get it. You were very lucky and called (caregiver) and she is free and will be there instead. End of discussion. "Mom I'm running to the bathroom, turning the phone off so you can rest -- bye)
Little by little try to gain more time for yourself. I sometimes use her illness to support my actions. If she doesn't remember from one day to the next, will she know if it is your turn to come or the caregivers turn? Are there any children's movies out? They may be easier for her to follow. How about one day a week in a respite center.
DO NOT feel guilty. Our parents have no insight into all of the "new fangled" facilities to help them. They have no concept of respite care, assisted living, at home care givers, etc. They out of hand reject help because they do not understand it. You will be of NO help to her or yourself if you are all worn out.
Good luck