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Mom wants to be with me 24/7 and is fantastic at the guilt thing. She doesn't want me going anywhere without her (she lives with me), doesn't want to spend her money on help. I want my life with my husband back but she just doesn't understand. She says she does and then is VERY upset if we go anywhere without her. I honestly can't stand this anymore. She's very controlling yet has alzheimers. Sometimes I just wish it would get worse so she didn't even know me anymore and I could put her in a nursing home. Right now I can't as it's her biggest fear. I'm tired (work fulltime and take care of my disabled hubby) but I want private time with him. Even going to the movies makes her unhappy being alone for 2 hours. This is the hardest thing I've ever done and no one in the family even calls anymore. I'm very very alone other than hubby and he's had it too with her making me feel guilty and sad. My depression is very bad right now but i can't even find time for a psychologist to go to. Not a free minute in my day. HELP

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I know it's 2016, so you have probably long since moved on, but I can appreciate the conflicting feelings and the sense of being stuck. I just tried getting my mom, who lives with me, a "friendly visitor" otherwise known as respite care, for a couple of hours two days a week (the absolute maximum she would agree to). The intake worker came to visit and it was a disaster. Mom went on about how she took care of her sick mother and raised her siblings and now every I just want to get rid of her. Then the worker was pointing out what I was doing wrong in my interactions with her (I'd like to see her live with mom 24-7 and not fall into the same trap; you can't be a professional and a family member at the same time. What I don't get is these organizations and social workers talk about strategies to deal with these behaviours but they don't want to share it with the caregiver (except in a very mickey mouse format). For example wouldn't it be really helpful for us caregivers to know what techniques and strategies are used in memory care facilities? Even more that literature, we need an opportunity to practice - life skills for the caregiver if you will. It just adds to the guilt and inadequacy I feel about not being able to meet mom's needs. Their immediate answer is drugs to control her behaviours, but neither my mom nor I are fond of that route, although I may have to revisit a mild anti-anxiety medication just to take the edge off the panic she feels at times. I wish there were herbal variants (besides chamomile tea which tastes like flowers).

Mom doesn't want to spend any money on help, and it is expensive; but the underlying motive is to maintain her independence, and she always has been quite an introvert. I can understand why it's pointless to argue, reason or explain to a person with dementia but trying to validate and distract does not work with mom. This approach is further impeded by my natural inclination to analyze situations and use reason, especially in highly emotional situations. I'm not trying to be cruel; I'm trying to break through. Now, I'm back to square one again, because respite care is not going to work. I guess eventually people with Alzheimer's go into the end stage when problem behaviours aren't an issue anymore; however, reading about it is distressing. So I'll take the problem behaviors, but wow, are they draining when you have to deal with them all the time.
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How do you bring up the subject of respite, we've just been given a place for our mum next month and are afraid we'l lose it as she gets all anxious if we say we've to go anywhere without her also when the day arrives for her to go she'l just panic - what do we do? Any suggestions
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Suegirl, I think you should start a new discussion/question on this site. It will get the attention it deserves as this is an old thread from last April. I hope you get the answers you are seeking and that is the best way to go about it.
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My Mother is showing age related problems. She's 91. Should I have her examined by Neurologist.
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You have to do what is best for you. I find it interesting people tell you "not be be judgmental" while they judge you. Whether she likes it or not, you deserve respite care. Call Alzheimer's Association and agency on Aging. I nope they can help you. I hired caregivers and my Mom would always say "I'm not going to talk to the,. I'd tell her that was okay. Within 30 minutes, she was kcal king up a storm. Take time for YOU. You deserve some happiness too!
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Difficult situations here, all of them. This phase of only wanting a sole caregiver, usually one of their "children" seems to me to be a common phase in dementia patients, one which appears to arise from extreme anxiety about the unknown and change. Geriatric psychiatrists are really good at figuring out antidepessant and antisnxiety drugs to combat these feelings. With regard to fear of nursing homes, at least where my mom is, she's getting far more attentive medical care than I would be able to give her at home. Sometimes, we have to remember that we're driving the boat here, not the parent. You the caregiverHAVE to take care of yourself. As Jeanne asks, if you end up in hospital--not something that doesn't happen--mom would be taken care of. So do it on your terms. Go to the movies. Go see a counselor. Tear up the guilt card.
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oh and if I dare wait to call her AFTER 1:00 pm? omg you'd think I was going to be disowned for not checking on her sooner. "I thought something happened to you!" she says to me. I HAVE to call before noon. If I call at 12:30 she tells me she is alone and bored, and sounds very weak, as she has fallen asleep in a chair alone in her home.
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It's so hard to tell her how it's going to be when, in my case, she has moderate dementia and literally says, "I will sell the house and move. I am still in charge of what I choose to do." (and I mean literally she says those words to me as a threat.) My bf says I should call her on that and tell her, "ok, go then... good luck..." but I know she would never survive on her own. Her loneliness even when I am right across the street is palpable. She makes sure I know how "alone" she is daily, even though I take her out 3 hours a day. Now I also sit with her through her dinner. It is never enough and I'm so tired of the 'duty' but I still love her. She has 2 grandkids that don't even want to walk over to say hi because she will expect something of them in terms of lawn service, house cleaning, etc. My son doesn't even care if he sees her again. And she, him. It's awful. I'm in the middle. She will not allow me to take her to a respite for an afternoon even. She will not allow me to call anyone to come in and be a companion. She won't accept "A STRANGER". Nope. She wants ME and almost all of me it seems. I am an only child. At 47 living week to week financially, this is very hard and I wish I could get a job. I have durable financial and health POA over her but I know if I cross her she will spite me triple.
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Bhen you just need to decide that you need time with your hubby-my husband did not want me to go anywhere without him but I did and after he died I was glad I had made friends outside the home. You may just have to let her get angery or give her a choice letting you have a life of your own or going into a nursing home-she does not have the right to have you to herself all the time.
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CeeJay, what a difficult place for all of you now!

First thing I'd do is get her checked out for a UTI. It's surprising how often that is the source of confusion and delusion. Medicare doesn't cover in-home care except in short-term situations, following a hospitalization.

What she might qualify for, depending on what her other health issues are, is hospice care. This would get a nurse and whole team of compassionate care givers in to help every week, I've done that for my very frail elderly Dad. And what it does is give him an expert to eyeball him once a week, a chaplain to help him sort out his conflicts with God (Is furious at God AND doesn't believe in God, so you see the disconnect), and I have someone I can ask questions of. It doesn't mean my Dad IS dying -- just that he has a constellation of issues that make it statistically likely that he may. I am so grateful for the extra help. You might be, too.
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HELPPP! My 91 year old mother lives with me and all has been pretty good for the past three years. On 2/15, she lost her only grandson (45 yrs old) to cancer. The loss was devastating. Nonetheless, almost immediately she began to tell me, every single day when I came home from work, that someone was in the basement, has climbed in a window and is in a spare room down there, even has a dog sometimes. She can hear him coughing and the dog barking. OY! The basement is completely finished with a master suite, my room, a spare room for storage, bathroom, huge closet and laundry room, ALL of which are extremely secure. My boyfriend was even kind enough to make custom dowels that are tucked and nailed into the corners of two windows that raise (of course now they can't) and has secured the laundry room windows with crossbraces. He even installed a new door knob set on the basement door where the lock is in the basement, no way to get upstairs. I took her to the doctor as soon as I heard it the 2nd time, she has now been on Celexa for over a month, things were going pretty well. Then yesterday I took a vacation day from work to go fishing. I didn't leave the house until 11:00 but got home at 8:00 p.m., her normal bedtime. She was so upset that "he" was down there again, she was trembling.

As of this moment I am waiting to find out if she's eligible for some kind of Medicare-covered in-home care; the funds are not sufficient for privately funded care. She doesn't want anybody in the house, says it will take her privacy. I KNOW it's time for role reversal; I'm losing my mind.

Has anyone experienced anything similar and if so, HOW did you do it without losing you mind? I can't even go to work without coming home to these delusions and God forbid I should want to go out in the evening with my boyfriend or a friend! I also have a 4 year old long-haired Chihuahua Dolly. Mom says she's not leaving Dolly, or I'd let my brother, nine years my senior and two hours away, take a turn at this...but she won't move without the dog and the dog is mine. Incidentally, her moving in with him is an impossibility...and don't ask why, it just is.

I would appreciate all the moral support I can get. I took another day off work to find someone to stay with her at least a couple hours/day, someone to talk to besides me and my boyfriend. I can't help but wonder where all of my relatives are that say they love her...or her neighbors who say they miss her. She never hears from anyone. It's really sad and I'm really exhausted...at 56, I don't need the stress either.
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....I've been away for a min but I REALLY don't understand who's judging who or trying to make decisions for whom which is really irrelevant because in the end we all must make the final decisios for ourselves. Howerver, My wish is that everyone will find the best care for their loved ones and themselves. No SHOUTING, judging or decision making for others here, just love, support and sharing.
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I have not read other posts, but my first reaction is: stop asking her permission. Get a baby sitter to watch her or interact at whatever level she is able, and just go about your business. It is too much to react as if she is your Siamese twin. Too hard on you. If you are seeing to her physical and medical needs, that is enough. Of course, you have a relationship with her, but when they are like that, no comprehension of other's needs, you need to take care of yourself first.
We don't judge other caregivers on this site. We don't criticize them for having frustration amidst doing a very tough job. Some people have a martyr complex and give a passive-aggressive message to make you feel badly about feeling badly!!! Don't believe everything you read here. Consider the source! Don't let anyone put a guilt trip on you!!! YOU and your dear husband are entitled to your privacy and life. Do what you have to do and remember: one of these days, her soul will move on, but you do not have to be miserable in the meantime. Have a good cry and go find a nice memory care home to place her in. You are a good daughter, and you will visit her enough. Hugs and Blessings, dear one:) Christina
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Contact an in-home care agency (or a few of them) Be sure to ask if they have experience in dementia care. Mom hangs on to you as a security blanket (at least she still knows who you are.) but when she gets someone she is comfortable with (or has to accept someone staying with her) she will be less clingy. My husband did well with a companion sitter during the day while I worked, but somehow always knew when it was time for me to come home. He would be ushering the sitter out as I came in. I'm glad he still preferred my company to theirs.
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Margie, that is a very provocative and interesting quote. Might just encourage me to read the book. Of course, we are all on the path to death. Nobody gets out of this gig alive! But our loved ones are actively heading in that direction, and we haven't come to that particular crossroad yet. It really has helped me to realize that my husband has a terminal disease. My goal is not to cure him, or even to keep him "safe" but simply to accompany him as far as I can, to comfort him, to snatch some happiness for both of us, and retain enough of my own health and sanity to finish my journey alone when I reach that crossroad myself. Sometimes when I read some posters' anguish, my heart goes out to them, and I think, "Honey, you have not accepted yet that your loved one is dying." Thanks for sharing that quote.

Peeweedeb, I am sorry you are feeling such stress at this time. I think it may be causing you to read into things more than is there. I don't know exactly who the "you" is who is just like everyone else. If you mean Sumlerc, I don't see her making decisions for anyone else at all. She is encouraging all of us to take care of ourselves, but not how we have to make that happen. What decision do you think she had made for you? (Actually, her response was addressed to Bhenson.)
At the risk of offending you, I too think we should all take care of ourselves. We are each unique and valuable individuals. We deserve it. And even if you reject that premise, if you collapse and wind up in the hospital, then who will take care of Mother? Part of our devotion to our loved ones should be an effort to keep ourselves strong enough to continue the journey with them. We are all just here sharing our experiences and trying to encourage each other. I hope tomorrow is a better day for you.
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I felt the same way, but mom is not living with me. a guilt trip every week....
I saw her 2x's a week because I love her their is more behind the story. In your life now you are the boss the parent and you need to tell her "this is going to happen and thats that". Its hard to be a parent's parent God I know. but you don't want to give up your life. give good attitudes and smile and say this is whats happening today. This is just advice.
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Well, I don't really understand where some of the responses are going, nor can I pretend to know everybody's particular situation. Here is something I read in a very wise book (Passages for Caregivers by Gail Sheehey) - she points out that one of the hardest things for caregivers to understand/accept is that their loved one is on a path to death while we must stay on the path of life. When I read that, I had to shut the book and sit with that thought for a long time. That willl mean different realizations/truths/scenery for all of us at different times. There's no one-size-fits-all for caregivers - surely we can all agree on that. I feel deeply that I must accompany my 94-year-old aunt on her journey as far as I can - I keep her safe and happy - but ultimately it is her journey. And I am on my own. Don't know if this helps anyone - if anybody reads the book, please let me know what you think. Peace, and Merry Christmas. margie
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i'M WAY PAST "WE" , AND MY ONLY FAMILY IS MYSELF AND MY MOTHR. You are just like everyone else out there trying to make my deceisions for myself and my mom. And after the decesions are made you all go home while "we" are still trying to make it through another day! You don't know me or my situation. You have no idea about my mom and her health!
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WOW! Me, me me? Really? Those of us who are care givers certainly aren't 'me, me's"! While we care for others we MUST also care for ourselves and the methods of care giving can vary from one person to another, be that in ALF, NH, in home, Foster Home, as long as EVERYONE is being well taken care of.
Bhenson, I and more than most of us on this website encourage you to take the necessary steps to help your Mom, yourself and your family, that way you'll feel better that it's not just me, it's "we".
I really wish you well on this journey, you deserve it.
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I UNDERSTAND SOOOO MUCH about how you feel! I listen to my boyfriend of 17 years tell me that he is very worried about me, because he believes that taking care of my mom is wearing me down. It has been suggessted to me by doctors, nurses and friends that my mom needs to go into a nursing home. I cannot do that to her. She does not want to go to a nursing home. It seems so easy for everyone to tell me that putting my mom in a nursing home is the best thing for her. This is MY MOTHER! Yes, taking care of her 24/7 is exhausting, but she has nobody else. I do have an older sister that conviently lives 3000 miles away, but she is not willing to help me out. I just wish that I could get some help!. I have bags under my eyes, and I feel as if everyone looks at me thinking " she looks so exhausted from taking care of her mother". It's difficult to carry on a conversation with anyone, because I feel like they are looking right through me. I'm mostly concerned about my personal relationship with my boyfriend. It seems to have taken a toll because of the situation, and of course, more added stress. Sometimes I just go off by myself and cry, but It really doesn't help much. I have become half of the person I used to be in my personal life. I describe how I feel like this....." everytime I walk to a closed door in my house I try to open it, but I am unable to. I walk to another door, try to open it, but it won't open. I continue trying to open doors, but they are all locked and won't open'! I feel traped! I love my mother very much, and I will never dessert her. Here it is Christmas time and I'm not sure that she even cares, for that matter I'm not sure that I care. However, I did make it a point to decorate the house, and to put the Christmas feeling into it for my mom. I just wish she would feel better. I can understand how you feel about your mom being scared of the nursing home, my mom is too. Hang in there, as hard as it is I believe that you are doing the right thing. Now all you yhave to do is convience your husband. You know the best way to a man's heart; is when the lights are low, and a little bit of loving can go a long way. Merry Christmas!
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tenderrose, you haven't filled your profile out. Who are you caring for? What is his or her condition?

Wanting to figure out how to get some time to oneself is not dwelling on the negative. Trying to balance the conflicting needs of two loved ones is not about me, me, me.

I hope you didn't mean to, but you certainly came across as very judgmental. Where is the love in that?
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tenderrose, yes she's my mom but she's not the same person I've always known as a strong independent woman. She's everything to me and do you honestly think I like feeling this way? It's something I hate about myself all the time. She was an angel sent down to me, adopted me as a baby and has been the best mom in the world. On the other hand, she hardly remembers any of that and not much she says now makes sense as each day it's worse and worse. Is that easy for me? Does it mean I love her less because I'm tired and worn out taking care of mom as well as my handicapped husband plus working fulltime and to boot, needing knee surgery that there just isn't any time to have? I adore that woman and NO ONE has had a better mom but this isn't her. It's a shell of who she was. I hope that you are able to understand that for other people going through this. Thanks, hugs and happy holidays
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naheaton can you tell me more about adult foster care? How do I find this? I've never heard of it. It may be an option.
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I just wanted to say that I hear you ... I hear your pain ... I hear your frustration ... I hear your guilt ... and again, I hear your pain. You have been heard ... and it is OK to feel that way about your mom.

I am in the exact same place as you with my Mom ... I'm at my wits end as well ... and I'm on my own with dealing with her. I know that I have to find a way to have some time to myself WITHOUT the guilt from her affecting me ... I'm just beginning to think about how to do that too.

No advice here ... just great big ears that hear your cry.
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Peewee, have you ever looked into adult foster care instead of a nursing home? I know just the word 'nursing home' strikes fear in the minds of many older people. So maybe that's a different option for your mom?
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I haven't any idea what the answer for you is. I am in the same situation. I sit at my computer typing waiting for my mom to wake up and call me, "Deb". As I hear that sound of my name, something inside of me cringes! If I don't respond quickly I'll hear the sound of her trying to get up ( she is unable to walk), that's when she usually falls and ends up in the hospital with fractured hips, dislocated hips, etc. I am unable to go to the bathroom without her looking for me. The doctors, have expressed concern about my overall health lately. They say it is beginning to show. Like you, my mother's biggest fear is going to a nursing home. If I could just get more help! Sometimes I feel as if I'm losing my mind. I cry alot. My mom and I live together in a house that we share the rent in. My only sister lives 3000 miles away, and shows no interest in helping out. She doesn't even call anymore. If you find a relief please share it with me. Also, know that my heart understands what you are going through, and although I don't know the answers; maybe it will help just knowing that you are not alone. hang in there
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I must say I don't feel your comments are very fair or respectful.. You are of course entitled to your feelings however I do not think we should stand as it were in judgement of someone else's feelings...
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I cant relate to your heart ache fill with depression nor understand the stress that has upbuilt within your everyday life, but i can say this... When ever we take a responisbilty its never for the worst, its for LOVE. Love is a very postive thing, it endures all things... remember you have the priveldge to care for her, since her time will be limit and you what most people dont have "your MOM" . When we dwell on the negative then everything around us is negative and robs us of the joy we have left in this beautiful life with family. We make issue about me, me and me, then we really forget the important of why we love others
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I whole heartedly agree with you quakerite... Reasoning is not a skill someone with Alzheimer's disease or dementia have. I would encourage an in home respite care worker... Mom may be resistant however it is not a debatable issue. Contact your Area Agency on Aging and they can help you. OR call a home care agency and ask if they have a respite care worker trained to work with AD or dementia... take care and God Bless!
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Main thing to remember is that you are not going to get her to understand or empathize with you. She has dementia. Remember the letters ARE: Never Argue, Reason, or Explain to a person with dementia. You can't make deals with someone with dementia, you can't remind them about anything. They live in a different reality than yours, one that is as totally real to them as yours is to you. That said, those of us who work/live with those suffering from dementia also have noted that they can be controlling, manipulative, and cunning. Your first duty is to yourself and you sound like you're on the ragged edge. My advice, as a nurse in the field, is to make arrangements to have someone sit with her. Contact an agency with experience dealing with Alzheimers patients - and really grill them. Ask them what their caregivers do if your mother says this or that, or acts out, or whatever. If their answers make you feel better, then hire one for a short time and go do whatever. If there is an adult day care in your town, talk with someone there. You cannot be held hostage to someone else's disease, especially if it makes you feel resentful, angry, and exhausted. What good would you be to her then?
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