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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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Rt oughtimes-thank you so much for your information- I am sure it will help someone have an easier time,
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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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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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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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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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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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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 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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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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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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Sandy
Listen to Decor-she has a good head on her shoulders and has been through so much herself;
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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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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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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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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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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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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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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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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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Hello Everyone,

I totally understand and I have been ready to run away from here also. My poor husband has been in termoil forever. This is the only thing we have ever fought about I cannot believe it. But dad is moving into his new apartment on Sunday the day before my vacation I get to move all his stuff for the second time but at least its out this time.

Seriously, if you are at the breaking point get help and no one could possibly understand the extent of taking care of a parent. We do not deserve to be so lonely when we are doing such a noble thing. But we are or so many of us would not have found this spot.

Thank God for this site to talk to eachother. I am grateful everyday just to know I am not alone!!!

Stay healthy
Alice
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runningaway,

Where were you from in Louisiana. I moved to Covington where I gave my Dad the Garage and made it into an apartment and gave my mom a bedroom in the house. We shared the kitchen. What a terrible idea. Thats where my problems started. My two brothers are of no help to me. They won't even keep my parents three days while I take a vacation with my family.

I feel for you. I know exactly what you are going through. We not only lost our homes but we lost our lives with it too. My therapist says I haven't got over the fact that I lost my home and then having to take my parents in was the topping on the cake.

My dad is no candidate for assisted living and my mom thinks she is too good for one. My mom is really the problem. She is so mean to me. She says things she shouldn't, corrects my 12 year old and aggravates everyone to death getting in conversations that she shouldn't be in. I too, could go on and on. The truth is I wish bad luck on them every day and know that the bad luck will come to me.

Last week, the left side of my face went numb. When that happened, I said GOD, I know you are punishing me for wishing evil thoughts on my parents. I don't mean to do it, I just am so miserable and so desperately want some kind of life without the guilt. Even if I put my parents in assisted living, I will be running for every little thing, because thats just me. I don't think I can change who I am this late in life.

Sorry for boring you,
Love,
Marylynne
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mlv3000, Don't you think it is far better to place your parents in assisted living rather than to allow poisonous thoughts to affect your mental health and wellbeing? There is no need for caregivers to become martyrs. If you have reached your tolerance limit emotionally and psychologically and physically, you are at the crossroads of making a major decision to help yourself move forward. If not assisted living, then a nursing home where you don't feel the need to remain in charge. Listen to your body. Numbness is not a minor symptom.
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OK, so we are all in the same boat. Taking care of our parents is hard. How can we help each other? Just reading each of your comments has helped, but there has to be more. Our government has to help caregivers and give us a break. The five year look-back is just too long. Nursing homes are so expensive, and the care is horrible. Those of you who have children at home have it the worst. It really affects them. Do you have support groups for the kids? I think that would be a great help. Hang in there. Synshinecaregiver is right. You have to take care of yourself because if your down, the entire system breaks. I know. My husband is in fear that I won't be home if a crisis happens. Don't feel guilty when you wish it would all go away. That is only natural. When I feel down, I hire someone to stay for the weekend, and we try to take off for the shore or at least a Sunday out. Mom pays for her care, so that helps a lot. Dear brother will inherit nothing. I am spending it all on her care!!!!!
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lovingdaughter, the government saves oodles of dollars based on those of us who are caregivers who work tirelessly to keep our loved ones out of nursing homes. It is unconscionable that there is not a major tax credit for anyone who is a full time caregiver to a disabled individual, including parents and/or spouses. Regardless, a caregiver spends out-of-pocket one way or the other, be it due to losses caused by a patient with dementia, transportation, hairstyling, clothes if the caregiver doesn't want the person looking unkempt and unclean, comfortable shoes that prove to be more expensive, etc....any number of categories. The problem is that caregivers don't hire lobbyists, so there is no legislation that has been on the front burner, much less anything that is passed. It is a sorry state of affairs.
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I am with everyone here and am thinking to myself also what can we do about it? I know if I do not look after my dad (and I really don't want to anymore) who will? And why do I have to worry about it when I have three sisters who are not loosing sleep over dads health?

Anyway that's our problem, we are the kind of people who feel guilty over everything, we actually need help in this area. I have thought of nothing but my father and husband for years. And no I never think of myself until now. A person can only take so much.

And while I am happy that my dad is moving on Sunday, I feel just as burdened as ever with him still being alone and me being his only source of help. I don't want this anymore but what do I do? Let dad fend for himself? He won't take a shower unless I tell him too. He won't go to the doctor unless I make the appointments.

I think when a person gets to a certain aga their should be some social workers like for children because they often become like children. My dad has nine doctors, I can hardly keep up let alone him keeping up and his meds they change them all the time. This is a huge job and no one should have to do it alone that's what is so sad.
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alicemb, the only thing that keeps me straight in terms of helping Mom with her prescriptions, prescription changes, etc., is that I take a portfolio each time I take her to her doctors appointments and take notes that I can refer back to. I keep a printout copy of all of her labs and have started to look at the results comparatively. Each time, I ask lots of questions and I try to ensure that whatever the doctor may be prescribing is proportionate to the symptoms Mom is experiencing to avoid her being over-medicated. One of the things that is obvious when one walks into any nursing home is that residents are over-medicated to help alleviate the dementia and wandering behaviors that unpaid caregivers manage on a sustained basis. I would hate to see anyone I love in a zombie-like over-medicated state, so even though some of the symptoms are challenging, in my heart I am thankful that Mom actively displays feelings and expresses herself, etc. For me only, that is one measure of quality of life. Like you, I make the appointments, and track them. I don't fault our parents for not keeping up with those. The way I see it, when one is outside of the "rat race," one loses track of time events and chronological sequences. Yes, it is a huge job, as you have said. I find myself annoyed by allied health staff who have no clue how to best communicate with mature adults who have multiple disabilities. They need to be better trained because how they pose questions and whether they wait to actively listen to the patient has a lot to do with how prescriptions are administered and course of treatment. The health care system is broken as far as I am concerned and caregivers like you and me, and many others on this website are the very best thing that our loved ones have going for them, simply because we really care and do take the time to be aware of their ongoing needs. It is a balance of allowing our loved ones to do as much as they can for themselves and picking up the slack whenever and wherever we need to, so don't bash yourself when you do allow your Dad to fend for himself. You also need to be aware of what he can and cannot do for himself. Depression among disabled mature adults is not only common, but as I see it, entirely reasonable given their declining health, including physical and cognitive limitations in some instances. The disregard for personal hygiene may be a sign that your Dad is seriously depressed. Do you know if his doctor is treating him for possible depression, or does he possibly have dementia that affects his ability to remember that he needs to bathe on a regular basis? If your Dad is able to live independently in his new apartment, you will still need to keep a watchful eye on him to ensure that he is not neglecting himself and/or posing a threat to his own safety, health and well-being, but it will no longer be your round-the-clock responsibility, so be sure to enjoy your newly acquired respite periods.
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i am so lost. I feel as though I am loosing myself. I have 3 daughters one who is 15, 14 and 4yrs old. I am married to a soldier who was in OEF and now suffers from PTSD. my father died in july and I felt so bad that my mother was in a nursing home that i thought with my heart and not anything else. I had a heart attach the day we burried my dad and i am ill. needless to say my mother is wayyyy to much to handle and now I cannot get her out of my home w/out her going to the hosp for a 3 day stay...well there is nothing wrong w/her except that she is bed bound, diabetic, depressed. i have tried everything to get her back int he nursing home short of paying 64,000 dollars that i surely dont have. please i am begging someone to direct me in how i can get her back in the nursing home. i applied for medicaid. but they are still telling me she has to be in the hosp for 72hours.....i am sooooooooooo hopeless. please try and give me some advice
thank you,
mary
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First, you need a Dr. who will get her into the hospital. If you take her by ambulance, they will probably admit her. If she has heart flutters as my mom calls them, they should put on a monitor and keep track of them. Tell them what you can ever think of to get her to the hospital. You can't take all this pressure
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about2loosemymind, sorry to hear about your own health crisis. You have been through a whole lot. If your Mom is bedridden and you have had a heart attack let your own doctor and your Mom's doctor know that you feel like your health is in serious jeopardy and you need medical intervention to get your Mom back into the nursing home where she can be prperly cared for. If neither doctor helps you to have your Mom re-evaluated for nursing home placement, contact your local health and human services agency or the area agency on aging and tell them that you are no longer healthy enough to care for your Mom and need her to be evaluated for nursing hom placement. While it may not work, it will be a start to signal to others who are in a position to help you that you have reached your breaking point. In the meantime, don't forget respite care if you can afford it, or an occasional 2-hour movie while you ask your 15-year old to sit with her grandmother while you take a drive, a stroll and take in a movie and maybe treat yourself to a heart-healthy meal. You deserve to celebrate the first day of the rest of your life. Please keep sharing as there are many who care on this website. Will be rooting for successful outcomes for you and your Mom.
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