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part of me thinkss its not running when we are the ones to make the difficult decisions for those we love. doing what is best for oneself should be first and formost. how can we take care of others if we are not happy inside our own selves.
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Dear Runningaway,

My heart goes out to you. Reading your e-mail brought tears to my eyes. I don't think any of us knew what we were getting into when we decided to care for our parent(s). I am a registered nurse who worked in LTC for over ten years and thought I knew what I was getting myself into. Was I ever wrong!!! We are all here for you. Vent whenever you want to. I have found that being able to express my feeling to other people who understand makes all the difference.
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If you are that ready to unload your parents and get on with your life, then it would seem that you are ready to start the nursing home placement process. Why put it off if that is really where you are in your life? Also, have you considered leaving them in the house and if they have an income, using their income to pay a live-in home health aide to care for them assuming that you are able to keep both of your LA and TX homes?
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If they can't care for themselves, likely assisted living won't help (sadly), and a nursing facility is the only lareger care center that would take them.

An option, if you can find it, is licensed home care where people take elders in their homes. We have several in my area, ranging from six to ten or so people. You could check with the social services people in your area and see if they know of any of these homes. Be sure and check them out, but they can be a Godsend if you find a good one.
Carol
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We too moved to Texas after Katrina, and had the grueling job of bringing my parents with us. Chose TX because sister lives here and she said she could help with them. A joke that isn't funny! As my Dad has said, "that brooms done swept clean" meaning that's done! So, we hate it here, which adds to the problem. Want to move back to LA. where I have my house. But don't want to bring along the baggage, if you know what I mean! We built our home here with 2 master bedrooms and a community kitchen thinking that would ease some of the tension of having them underfoot, but it seems they are always in the way at the most unopportunic time. I caught myself going around the island in the kitchen like on a carrousel to get away from Mom and her shuffling feet! Help me!
I have inquired about an assisted living apt. for them both but I don't think Dad can care for her or himself. I don't let them cook or prepare anything to eat since he won't wear his glasses and almost set a fire in the microwave making popcorn.
Now they're up all nite and sleep all day. I could go on and on, but the more I write the funnier it gets! Or the sadder I can't tell anymore...
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O.K., here I go again. Runningaway, I will join you. Been taking care of my Dad, 3 strokes and in a wheelchair, and my nervous mother for 20 years. First going back and forth from house to house, maybe 5 times a day. Lost my house in Katrina and had to take them into live with me. I am totally nuts now. My husband hates that my life revolves around my parents and we are having much trouble, also. I bought a house and attached an apartment to it, so they would be separate. lt didn't help. My mom still aggravates the living hell out of me all day. I, too, wish I could get in the car and never look back. Just started therapy sessions with a counselor, who wants to see me once a week, because he is afraid I'm going to kill myself. I won't because of my 12 year old daughter. I am 46 and don't want to be doing this for 20 more years. OH GOD!!! I can't stand this any more. I don't even want to wak up in the morning and I can't find my smile either. We are all in the same boat and I am not ashamed to say, its either them or me and I don't care which one it is any more.

Marylynne
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I am so glad I found this site! I have the same problems, parents have been with us for 15 years! I can hardly believe that but my daughter often reminds me! Mom has dementia and Dad is so depressed that he constantly is picking at his face from nervousness. She is on Meds and also is diabetic of which I have to admin. insulin. I feel so alone in this situation. My sister has returned to work I believe to get away from the situation of maybe being called upon to help me. I know I put myself in this situation of being the caregiver but its draining me so bad that I feel like running, running away and never looking back! My husband and I are constantly at each others throats lately as I turn to him for support and he's just fed up with me having to care for them. I am reluctant to even speak to him about my problems with them which have lately been all I can talk about. I saw a therapist last week and through the sobs and making excuses for everyone else not caring enough to help I know I rambled on for the whole one hour session! She wants me to come back, imagine that! Like I need therapy...seriously....I'm very aware that I need help. I want my life back! And I don't want to feel guilty about it! Is that to much to ask? I'm 55, and I can't find my smile anymore.....
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This blog is a God-send! My mom does manipulate me into feeling guilty. However, when her mother was old, she took care of her too, so I feel an obligation. She adopted me as an infant, and has been very helpful financially in the past. She still throws everything she has done for me in my face regularly.
I can vent here, and people understand!
Thanks everyone!
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Sandy
Listen to Decor-she has a good head on her shoulders and has been through so much herself;
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Caregiver guilt is such a huge issue. Most of it is that we are still the little kid inside, wanting to please our parents. And when we can't please them, we feel bad.

People do, consciously or unconsciously, choose their lives in many ways.
Alcoholism is a disease, but there is help. Once people's brains get to the point of dementia, however, most help will be ineffective.

Siblings who don't help affect many, if not most, families. Men are getting better at stepping up to the plate, but I think most of them are only children. This isn't always the case, of course. But it still seems that if you are "the girl" - especially if you live close by - then you are "it." It would be nice if siblings could at least give you a break.

Hang in and keep talking. That always helps a bit.
Carol
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Hi Everyone

I am feeling guilty of course because dad is all by himself. My husband and I have no children and have made arrangements for our older years. I think even if we had children we would have made the same decisions concerning our older years or if we get sick.

No one should have to take the burden and responsibility of someone else. I know that family is family and have taken care of my father for many years but I feel guilty all the time and I don't know why. Because I did not choose his life, I was forced to watch him drink day in and day out. And now I cannot believe I feel guilty because he has no one.

I have 3 sisters who don't care and I am always at conflict with myself and my husband over what and how much time I spend with him. He was living with me and that was a disaster but now he is at his brothers and waiting for an apartment to move into.

But nothing solves the being alone. Nothing.

I don't know why I am still always feeling guilty if I go a day without calling. I even try not to for his sake so that he don't get the wrong idea and expect me to do everything for him again.

This is the worst thing in life to deal with and I don't know how we do it but I am glad for this place to write.

Feeling bad today because I am feeling sad for him again!!
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I just found this site, and I am so glad to know that there is a group with so many of my concerns. After reading what was posted, I have a better outlook regarding my situation. Three years ago my mom came to live with my husband and me. I am retired and can give mom the time and love that she needs. Of course , it is never enough. We sold her house, put the money in a trust, and use the funds to hire caregivers, buy what she needs, and provide health care. We are lucky that she had no debt. At 87, she is sharp, but very lonely and in much pain. Arthritis, spinal problems, and Parkinson disease has affected her life. Two years ago she received a new knee which was a Godsend. My problem is that I have a brother who refuses to help. He only lives 37 miles away but has taken what we call a " no thanks you portion" toward mom. He calls every weekend, and comes to see her on holidays when he gets a free meal. I have tried to reason with him and his wife, but I have gotten nowhere. She has her elderly mom to deal with and that is the answer I always get. Mom thinks the world of my brother, wants to leave him half of her money, and can not see that he is hurting me. She feels that I should take care of her because I am the girl!!! That attitude just sends me up the wall. To all you women out there. Raise your sons to know that they have equal responsibilities to their sisters. Mom tries to be respectful of our privacy, but I feel so guilty when she sits in her apartment all day. She won't come into the main part of the house because it is too cold. Only in the summer and spring does she join us. Getting away is very difficult and very expensive for her because she cannot be left alone. Last summer, we put her in a nursing home for two weeks while we went away. They have a two week minimum, so weekend vacations are out of the question unless one of her daily caregivers can give up a weekend.

All and all, we are lucky. She is a loving mother, but I need a break!!!! The holidays are coming, and it can be a depressing time of year for so many. Peace to you all. So glad I found you.

Lovingdaughter
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pkpurs, this fear is so real to her. The paranoia. The TV being "real." Hopefully, a doctor can give her some Ativan or some other anxiety medication that can help.

Many types of dementia come with this, especially later stages of Alzheimer's. Please don't fault yourself. It's the disease and no one can do more than you are doing, but medications may help. You are doing all you can. Get medical help and some respite help, if you can. But, please understand that you can't make her happy. The fear is real to her and it's not your fault that you can't make it go away.

My dad's surgery did that to him and it's so horrible to feel so helpless, as a caregiver, so my heart really goes out to you. But all you can do is try to calm her and get medical help for the worst moments. Please keep coming back and talking about it and get as much support for yourself as you can. Caregiver guilt is so common, and in most cases, unfounded. We try to do the impossible, and when it doesn't work, we feel guilty.

Take care of yourself and let us know how you are doing.
Carol
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I understand your Mom's symptoms, and I am also suggesting that you do little outings by yourself. If she has anxiety attacks and prescription medications can't help her, you know that you have done all you can, so an occasional movie night for yourself, even if only at home on your DVD with your door closed when your Mom is asleep may offer you a brief respite. As a caregiver, I don't recommend that we exclusively focus on our loved ones. You and your husband may want to take turns? I don't have any backups and do not wish to pay an outsider to do the job, so by choice, my outings are close by where I can always return home within 10 minutes, if I need to knowing that my cell phone is always on and that I periodically check on Mom if I don't hear from her. For me, it is all about achieving a balance
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My mom gets so agitated when we go any where!! I do sit outside sometimes, which she use to love, but now she is too afraid. We use to go to the park alot just to get out and we would sometimes eat a picnic lunch but now the trees blow and she is terrified!! She gets so upset and then she ends up soiling herself and that makes her more upset. I've tried to tell her its' ok, that everybody has accidents but it doesn't work. She even gets upset when the TV is on. She thinks whatever is happening on the TV is really happening. When someone comes to the door she hides. She is just soooo scared of everything!! I have always worked with animals and I have patience. I could coax anything or anyone into relaxing but not mom. I feel sooo guilty that I can't make her happy no matter what!!
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Caregiving is life transforming as your post suggests, pkpurs. It is not for the fainthearted. Still, for me, it is important to carve out little moments of outings, even if only an early morning drive, or meeting a friend for dinner and getting all dressed up, or sitting outside in my garden. I also take my Mother for lots of lleisurely little drives which she enjoys. I put some soft pillows for her to sit on in the passenger's seat and one for her back and throw an underpad over the pillows as an extra precaution and our drives are lots of fun. For me life cannot be all work and no play. Be sure to take care of yourself as well as you take care of your Mom!
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Alice,
You may be right about "what comes around, goes around" but I do not want my son to take of me when I no longer can. I wouldn't want this burden for anyone!! I love my mom but I have had to give up my entire life. My husband, daughter and I are able to do nothing outside of our house. We use to go to many things to do with my daughter (she is a 34 year old Downs) go out to eat, go to relatives for holidays. We can't do any of that anymore. My mom spits her food out and plays in it. She has very little control of her bodily functions. Needless to say, we don't leave the house. My husband does the grocery shopping and that is it!! I can't drive anymore because I'm having problems wiyh low blood pressure and Vertgo.I would wish that no one would have to go thru this, especially my children!!
That sounds like whining and I'm sorry but its been a bad day..........Smile, ya gotta laugh to keep from crying............Phyllis
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Hello everyone,

I hope everyone is well and staying mentally happy. I know how hard it is also and beleive it or not I still believe "what comes around goes around" so just think we all have so much to look forward too.....

Have a great day and love yourself first always.....

Alice
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Rt oughtimes-thank you so much for your information- I am sure it will help someone have an easier time,
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SunshineCaregiver had some wonderful insights. I'd like to add that the reason your mother can tell stories is that they are back in her long-term memory. It's the short-term that is causing her problems, which is normal with dementia.

It's good she occasionally recognizes that you both need help. Transition is never easy, and you will feel abandoned and alone, and often guilty, no matter what you do. She will, at times, be angry, but she's angry at her disease. That's normal.

Please do make sure you keep up with our own health needs. What would your mother do if you got sick? She needs you as her advocate and caregiver, even if she moves to a care center (maybe even more so). Getting outside help isn't giving up - it's getting extra help so you can care for both of you.
Carol
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Hi, mrbdawg. That feeling of loneliness you describe has a way of rearing its ugly head when a caregiver least expects it. For me, that can be in the midst of lots going on when it hits, and just as quickly seems to evaporate before my very eyes. I think the lonely feeling you describe it may be related to knowing that as the sole caregiver for a loved one, the buck stops with you, certainly with me in my situation where I am as well, all while everyone else in your loved one's life seems to have pulled way back. So there you are...all alone! I am sorry that you are feeling the way you are, and also know that your feelings are entirely normal, not to mention a healthy dose of realistically looking at how much you have to do at this particular time in your life on your Mom's behalf. A good place to start is by making an appointment to see your own doctor to share how overwhelmed you feel. Doctors have lots of referral resources to share. Please don't be so hard on yourself thinking that everything you do is wrong. What you are doing is a difficult thing. After all, it is your Mom and not a stranger. There would be something wrong if you had no feelings whatsoever. You are normal and are in the right place to share with other caregivers, including me. I sure do understand. Don't give up on your Mom, and certainly never give up on yourself. Life is always worth living, even on the dreariest of days. You and your Mom both need each other. It goes without saying that your Mom is also going through a rough time...which accounts for her occasional resistance. Dementia is horrible...just horrible!
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My mother has been living alone since my father died just over a year ago. Her memory had deteroriated, where there are times she is fine, can retell stories, but there are other times she can't find money or keys in her purse. Lately she is confused with the light switches in her home.

I'm on leave from work to help place her in a facility, which she is hesitantly receptive to, but othertimes she is resistent. There is no other family willing to help, and her friends have abandoned her. I feel so alone and everything I try seems wrong to me and it seems hard to find anything to hope for. I need some type of help, and I don't even know what help I need. where do I turn?
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Talking about it helps, when you know people understand. It's good to hear from you.
Carol
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To all who have responed to this e-mail of mine--I appreciate all the comments made. Seems like I opened a can of worms with this one. Seems like alot of people are in the same boat as me. I am 61 years old, still work full time, am in the process of moving into a new home and have to take care of my mother after work. It just gets to me sometimes! I am going to try and hang in there a while longer and see what happens. I just get so depressed,stressed and fed up sometimes I just want to cry. I have thought about sending my mother back to the state she lived in originally to live in her condo with full time help, but that would mean that my sister would have to check on her, and my sister has pretty much washed her hands of my mother. There is no one else that could check on her. My sister feels it was my mother's own fault that she had a stroke because she knew she had high blood pressure and did nothing about it. This may be true, but what is done is done. I have made sure she sees a doctor regularly since she has come to live with me and she does take all necessary medications now. I have a great husband that supports and helps me, but even he is getting tired of having no life anymore. Just needed to vent a little more. Thanks again to all.
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Yes, I'd have her sons in Canada check. Maybe that will be a good thing. But you are wise to work with an attorney here and go with that advice. Hang in. You did the right thing. We all need to learn that good intentions don't always make good records, so we need to keep records even when it doesn't seem to make sense.

I, too, just send people to an attorney. It's too complicated (and risky) for any lay person to give advice.

Take care of yourself,
Carol
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Thanks Carol, I just spoke with an attorney. Looks like I need to pick a nursing home, tell them that I have Medicaid pending and then wait for the spend down period. If I state that I have charged her rent then she would be closer to getting into the house ( regarding spend down) but it would then be taxable income to me. I don't even want to mess with that. Looks like we will just go through the motion with SS, give them what they request and then wait it out. She has sons in Canada who need to be helping as well. Perhaps, I can have them check on their side. Thanks for your response.

Disclaimer: The information that I have written in this post is in no way meant to be used as legal advice. I am not an attorney and am in no way qualified to advise on any legal matter pertaining to Elder Care Law.
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Definitely, an attorney. There are too many variables for a lay person to go through. And it needs to be the right kind - someone who has experience in estate and aging issues and knows Medicaid law well. It's changed a lot in the last couple of years.

Carol
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His mother is actually a Canadian citizen. Does anyone know if Canada has Socialized health care for nursing homes? She is also ready to go and asks us every day if we have a found a place for her. Again, if anyone has had experience with the spend down procedure with Social Services, I would be very interested in hearing. I think an attorney may be our best bet. Open to suggestions.Sure would like to be living with my husband soon!
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There's so much truth in what you said. A caregiver goes into it thinking that they are caring for the elder and everyone is in it together. You spend everything you need to in order to take care of the person. Then you end up in a mess like this.

The need for records isn't the first thing on your mind when you bring an elder into your home. It's caring for them. There are many in your situation (which doesn't help you, I know).

But thanks so much for sharing what you are coping with. You are right - would you get paid what the nursing home gets - for private care? Not likely.

Our thoughts are with you, and we're glad you are in a better living situation, now. Hopefully, you can get through the Medicaid mess without too much pain.
Carol
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MindingourElders: yea i tried a place for mom, but when i called them, i got the worst customer service ever! they were swift with me as if they had more important people to talk to and when it came down to it they were like here are some homes do everything yourself, no hand holding, and ive never been in this situation before, so i have no clue of what to do, so then i complained to my alzheimer's association adn they then recommended me to your senior care and yourseniorcare bascially hand help me through the whole process..i was really awe struck, but maybe i just got a bad person at a place for mom, but from now on, i'm recommending your senior care to everyone i know. Good luck!
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