How can I get away without my mom when she won't go to respite care or to a relative's?

Do you have a relative close by that will keep her company for a few hours? In that way you are very blessed.

B, you just have to put your foot down. My dad died a year ago yesterday and he catered to every sneeze my mom had. She was spoiled rotten. I'm thankful that the hospice people pointed that out to me, otherwise I would be living a guilt ridden life.

Sometimes, it just takes a person from the outside to see how you live. That's what changed it for me.

Tough love kiddo. Tell your mom you're dying inside because you're not present in life. Do you really want that for me mom?!

Is assisted living a possibility? You sound like where I was six months ago. My life was miserable when my mom lived with us. I don't know where I found the courage to get her into AL, but I did. I thank my dad for my strength with her actually. :)

Ask your mom if she remembers how she liked being alone with her husband? How would she have liked it to NEVER have a moments privacy? Try to get her down memory lane for a minute, then strike while the iron's hot. This guilt thing is crazy, you're not going to execute her after all right? jeesh.

How did you get away from your child when she refused to stay with a babysitter? Well, she didn't really get to refuse, did she? You did what was best, and she had to learn to cope with it.

How can your mother refuse to let you go out? Other people can buy you tickets for a guilt trip, but you are in control of whether to go or not. Or you should be. If you need help with that, see a counselor. See a counselor even if Mother doesn't want you to be gone regularly.

If she really needs 24/7 care, she is in the wrong place. She needs a placement where they have a night shift, and enough staff to spell each other for breaks. If she is well enough to live in your home, she needs to be able to stay on her own for reasonable periods. If this isn't possible, then she needs either to go somewhere else or to pay for assistance to come into the home.

What is she saving her money for? Has Alz made her forget we can't take it with us?

Maybe dementia has made her incapable of making decisions in her own best interest. Just as your daughter could pick out what to where to kindergarten but not do the menu planning at 5, there may be some decisions you have to take over for your mother, for her sake.

Figure out the boundaries. Lay it out for Mom in terms she can understand. Here is how we can keep you here with us: 1, 2, 3. Spell out the help that has to be available. Spell out your expectation to be able to go out, by yourself, and with your husband. Tell her what has to happen financially. Repeat as necessary. Be firm and kind.

You don't have to wait until she doesn't know you to place her in a long term care facility. Try keeping her with you with some in-home help and some boundaries, while you are getting some counselling. Work at it. And know that if you can't make it work there are alternatives. Really.

You must find a way to get her to understand you cannot be with her all the time. You deserve time for yourself. As another answer stated, be firm but kind. I wish that approach would work for my elderly problem, though. But you absolutely do need time alone with yourself and your husband. It's absolutely necessary, for your health and peace of mind, for you to get your mother to understand that.
It's easy to give advice, I know, when it's not in your lap! But I do understand how valuable the time you spend with your husband can be, and you need that for yourself. You'll be making the right decision when you are seeking a balanced approach to loving and caring for your mom. If the scale tips too far in her direction, you yourself are off balance, and it hurts both you and your family when mom gets the lion's share of resources, care, and attention.

I agree I had to tell my husband-when he needed to be placed and he said no just as he had about going to adult day care-it is not your decision to make-just as you can not give into a child that is being unreasonable. I found that any small change that I made gave me courage. When my husband was mean to me when visiting him in rehab I learned to leave-not just go down the hall for a spell and when he was nasty to me on the phone I would not go to see him for a few days-he finally got it that I would not stand for his treating me badly. After a while it gets easier to take a stand. Tell her you are going to do things without her and if she will not go places without you-you are still going out without her.

Actually, I DISAGREE with the advice that you must get her to understand anything. That would require a personality transplant on her end. I'd say that the option here is for YOU to understand that she will not be happy no matter what, and then step back and grab what time and peace you can create, until she is in full-time care elsewhere. Also, be clear to yourself about what you want refuge from: Time spent taking care of others, or time away from her complaining (or both). You won't get time from her complaining until she is incapable of it. There are some terrific techniques for taking the "sting" out of emotional encounters in the realm of "energy psychology" and they are do-it-yourself techniques. Google things like EFT, or Tapas Acupressure Technique, or Be Set Free Fast, and see how easy they are. Then maybe you can get relief while she still lives with you. I'd go nuts without them.

Good luck to you!

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?

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!

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

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...

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

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?

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.

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.

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

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?

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!

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.

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!

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

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.

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.

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.

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

....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.

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.

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.

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.

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.

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.