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I am on only child, caring long distance for my Mom. Her health went from bad to worse in 2010 after she called me experiencing what turned out to be a brain hemorrhage. I traveled to be with her and care for her for 3 months. She ended up back in the hospital two weeks after I left. Evenutally this led to her being placed into a nursing home. Initially we were set up for assisted living and she backed out at the last minute. There are no friends or relatives to help. She cannot travel across the country. I am unwilling to give up my home and move to be closer to her. I do not travel well myself. I call her every day or so and each day the conversation is the same.She says she wants to get out of there, she hates the people there, the food is awful, she will not let anyone touch her and she wants a place by herself. She has always been somewhat reclusive and because she feels so poorly, I know she is very emabrrassed about how she looks and feels.

I have hired an elder care nurse who is wonderful and sees Mom every two weeks. Her regular doctor felt a nursing home was the best option for her, because she wouldn't let anyone in her home to assist her with anything. She didn't even want me there and had a psychotic break over me being with her. She does appreciate some of the things I have done, but this is not how she pictured her life in her old age. She feels she has been stripped of her life and I have to admit that is probably true.

She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this). They finally got her into the beauty shop to cut her hair and she was very upset that they "violated" her in that way.

She will interact with her roommate and others and she seems to save her worst moods for me. Guess she feels comfortable with me.

Today, was like most. She just wants to die because she is so miserable and she hung up on me. I have talked to the social worker, her elder care nurse, and friends. I wish I could make all her wishes come true, but I cannot in good conscience give her what she wants, which is her freedom and the control she used to have. I am at a loss and feeling overwhelmed and sad. Now I have total control over her finances and all the other things I should have.

Back to my original question.....am I doing enough and if I am not, who will tell me?

Thanks for listening.

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The only question I have for you is sort of a oxymoron, if you were taking care of you and were in your right mind, would you be pleased with how you are doing things? I know it's a crazy question in some ways, but nothing you do or don't do will change her health issues.... and apparently you or the Dr's can't MAKE her let others help with her care.... have you asked her Dr. about alternatives ? I think if it were me, I would call in a phyc eval or have the Dr. order one.... I am having a really hard time accepting that no one has cut her nails in a year.... not calling you a liar, just wondering exactly what her Dr. is doing for her welfare...Surely someone on this sight has some answers for this one.... but sounds like you are doing all you can for her under the circumstances..... Can you hire an independant caregiver to set with her a few hours everyday, and after a possible 'bonding', she will allow this caregiver to do more hands on care??? I'm sorry, my mind is jumping all over the place with this one, but I do know you might need to get the Dr. more involved... let us know how this turns out....
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It's weird that she physically doesn't want anyone to touch her isn't it? I mean that sounds like a kid with autism or maybe a blind person that doesn't see when someone is going to touch them that would scream bloody murder. That in and of itself I think needs to be discussed with a doctor. Maybe it's a phobia type of thing, like agoraphobia or something that has developed. Either way, she needs to be seen whether she likes it or not.
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Thanks ladee and NancyH.....more about Mom. I am being charged (Medicare pays most of it) for two visits a month by the doctor assigned to her case. I am pretty sure he doesn't actually see or talk to her. Probably just consults with floor nurse and orders her meds each month. The only time I spoke with him was in the very beginning of her residency and it was more about how he was going to get paid. I have tried to reach him on a few occasions and that met with no success. I have asked my elder care nurse (private hire) to assist me if something problematic occurrs, like those nails. They gave her a psych eval mostly to address her depression and anxiety. That is where the behavioral delusion diagnosis came from. The psychiatrist doesnt see her unless he has to adjust medication and his nurse usually sees mom. The doctor assigned to her sees many patients in the nursing home. Her regular doctor does not make nursing home visits. If the elder care nurse could actually get her to her old doctor, that might be a help. However, she can't even get Mom to go for a ride (wheel chair) in the garden. Mom refuses everything that is offered. I have the nurse bring her flowers for special occasions and now she says she doesn't even want those, that they disgust her!

Ladee, I believe I am doing the best I can and I would be happy with my care!

I have thought about a caregiver spending more time with her, but she is so antisocial. Nancy, she is not agoraphobic, as she will wonder out of her room and she can be sweet as pie to your face.....but behind your back her comments can be hurtful. That is probably the dementia. She says stuff like if they touch me I'll shoot them or kick them in the a__! She comes from a generation that was very bigoted....need I say more.

On her good days, I can get her to sing songs with me and I try and tell her jokes. Lately, the good days seem so few and far between.

She doesnt shower, says she does all the work around the room and helps her roommate. She does putter around straightening up things and making her bed. Won't watch tv or read. Just sits and looks out the window. Won't participate in any activity. I believe she is afraid of looking foolish.

Regardidng the foot/toenail issue. A podiatrist has stopped by several times and each time she has refused to let him look at her feet. She tells me she can take care of them herself. She does not have the tools to do the job and beside, the nursing home won't let her have scissors or sharp objects for safety reasons. I make the mistake of sending her a manicure/pedicure set and they took it away. This was before I realized how bad the nails really gotten.

There is no way they are going to help her unless they anesthetize her and that probably will entail a trip to the hospital. She won't want to go. I agree that she has a phobia. Once in another nursing home, they took her to the showers and she freaked. Funny, how they never forget the traumatic events, but can't remember what they had for breakfast.

It is pretty horrible to watch her go through this emotional pain. Truthfully, I don't think she would act any different if she was living under my own roof, or in her own home.She always was very judgemental toward her neighbors. I found old letters that she would write them and she was always complaining about this one or that one. As it got more pronounced I began to realize that mentally she was changing. I am sure her quality of life would suffer greatly if she was allowed to live on her own and I wouldn't consider it at this point. Oh, BTW, she won't eat in front of people either. Has her meals delivered to her room.

Thank again. In case I didn't mention it, I live in SW Washington, she lives in Southeast Florida! Not a good thing cause I have control issues too! However, I have not lived near where my parents lived since 1964 when I married and moved away.
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Your situation sounds so similar to mine. First off, the patient has a right to say, "No." Everything you are doing for your mother is because of love. You must believe you are doing the best you can given the distance and her issues. There is no way you can make her happy. So, please, trust that you are doing fine. She is lucky to have you and no one can take that away from you.
Take it from someone in the same boat.
(Can she be given a sleeping pill to cut her nails?)
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Hi Craz....The psych doc ordered her ativan to be given before he comes. I just hope she doesn't have an allergic reaction to it (she has major allergies). However, I don't have clue when he will show up. I have been encouraging Mom to let him work with her and discuss all the options. I never know how she will react to my suggestions. As I mentioned today, she was in a foul mood and hung up on me. She can't call me back (no long distance from her room), so tomorrow I will call her and see how she is doing. Thank for caring and hugs to you.
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Joyce, you are doing the best you can under the circumstances, and doing this long distance is hard under the best of circumstances.... just so sorry for YOU that she is so anitsocial so most of what you could do would be rejected.... short of going out there for some sort of intervention guess there is nothing else you can do.
And some of this is the NH responsibility to let you know what is going on.... so know you are a loving daughter doing the best you can, and if you want you to take care of you.(lol) then give yourself a hug and know you can only do so much.... guess this makes some of us grateful for our own mess.... hugs and angels for you....
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Joyce, the only thing I can tell you is from experience, she wil have to be given something to knock her out. when she wakes and is upset at "being violated" tell her that this policy "being sedated" will continue unless she is able to cooperate. You know her better than anyone and you will be able to make her understand that. Sometimes you have to be tough and it hurts very badly. My mother is alot like yours. No amount of reasoning or trying to be delicate ever worked. She had to be told by myself and a nurse that she must bathe and allow cna's to help her or she would be sedated every time , she was also made aware that if she did not bathe and take care of herself she might get an infection that could possibly land her in the hospital. I love my mother so much and it broke my heart to get tough but sometimes it means the life and happiness of your loved one. I would exercise my right to find another Dr. for my mother if he is not giving her one on one care. Any dr. that is worth their salt as soon as they lay eyes on your mother would know there is a problem, he should be your advocate when you are not able to be there. She possibly could be standing her ground as far as being in a elder care home maybe she belives that as long as shes there she refuses to cooperate she will be allowed to go home , maybe if you made that clear to her (thats not going to happen) you might get some cooperation. I hope that this helps I know it hurts to have to put your foot down. But thats what I had to do and it worked. My heart and prayers are with you. Its not an easy job.
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Joyce W ---I am in the same boat as you and many others. Love can't fix this probelm. I HAVE asked myself many times if I was in my mother's shoes would I want "this" and my answer is "HELLNO". WE know when a parent is MISERABLE FOR TWENTY FOURS HOURS OF EVERY DAY...The aides, nurses, and doctors do NOT know this, nor do they care. They have a job to do and they will do it - for anyone, anytime, anywhere, and for any length of time. You are doing the very best you can do for her, too bad we all are truly unable to provide them with a dignified and peaceful death at the point when they truly have no quality of life- not for one minute of one day. . That is what I pray for my mother, I don't know about anyone else. I do know that it is not an option in the U.S. and it SHOULD BE! Modern medicine can keep bodies alive for years and years. This is why I tell family and friends that I honestly PRAY my mother gets cancer! How horribly sad is that? As for not wanting anyone to touch her---that is VERY common where my mother lives (dementia care assisted living). Think about it----it's the "last " ounce of control she can have over her existence....do you blame her? A study was done asking thousands of elderly people what they were most afraid of, and the obvious answer should be "I am afraid of dying". The over-whelmingly REAL answer was : "I am afraid I will need help wiping my butt in the bathroom." and "I am afraid I will go to the bathroom in my pants." That speakes to the DIGNITY that the medical profession seems to disregard. God bless you Joyce W. it's heartbreaking and a helpless place to be right now. I know.
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I truly do understand what must be an overwhelming sense of helplessness concerning my mother. I moved my mom into an assisted living facility almost 2 years ago because my husband and I determined it wasn't feasible for her to live with us anymore because of medical needs and we have 2 young children to care for. It's taken me all that time to finally come to the conclusion that Mom was also a recluse who didn't like anyone and wanted to control her own environment, schedule, etc. I try and make short visits every morning to check on her and her basic needs are being met, she's clean and most importantly, she's alive. I almost suffered a nervous breakdown trying to make her happy and had to work thru my own guilt, resentment, etc., to realize that it's important for me to live as well. I pray you find peace, and find it soon for your sake.
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My situation is so similar and I could relate to all of the above posts. I'm not an only child, but brother passed away 9 years ago and sister lives 3000 miles away and rarely even calls my mother. So, I am in it alone too and live 100 miles from her. She is in a NH and I have had all I can do to keep her out of the mental hospital; which is where she almost ended up due to her behavior at the NH. She was threatening her roomate and bullying others.

I worked closely with the staff and she now has her own room and things are somewhat better. I know this is where she needs to be; but she will never be happy anywhere and lets me know continually how bad things are - it never ends. And I'm on the heels of my MIL passing away who lived with us with Alz. and I was her caretaker. That's another story, suffice to say the stress alone from her; which had a lot to do with her personality caused my health to deteriorate as well as my husband and my children were on the receiving end of her anger; and that makes me so sad. They are grown up, but living at home.

Sorry to go on so, but every post above really helped me today. Just knowing I am not alone and the words of others can be so powerful when you least expect it. Long story short, yes we are doing the most we can. My thoughts and prayers are with everyone and I'm so grateful for the unexpected words of comfort I found here today even though they were not meant for me. And, Joyce I admire all you are doing from such a distance; bless you and take care.
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I agree with so much here. No one can make someone happy, and no one can make them choose options that allow for easier circumstances. It sounds like your Mom only has her sights set on something that never will happen: a return to independence and the capacity for independence. You ARE helping her the best you can. Maybe the next adjustment is in your view of what " success" looks like. A happy mom doesn't sound like a possible outcome, to me.
Sending so much love to all of us, and our cared-for-ones, to
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Hi Joyce: I think you are doing all you can and I'm glad that you made the wise decision to stay in your home. I think the elder care nurse you hired was a great idea and can give you some great independent feed back. You said they are working on medication for the depression, anxiety, etc. Maybe when those kick in her behavior will improve. Keep us posted. Hugs, Cattails
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Joyce, you are doing all the right things. When they are a negative person, it only gets worse as they age. My mom is the martyr type that the glass was half empty and it had a crack in it and I had to carry the tray with everybody else's glasses. Now she has evolved due to dementia that the glass is half empty, the crack was done deliberately and there is poison in it and there's 2 trays to carry.

It may be that this NH is not the right fit for her. I'd suggest you have a talk with her elder care nurse about what the residents are like at the facility and how busy they are for/with activities. Is your mom like most of the residents? You may on your next visit down, meet with the social worker to see what their take is on her.

I moved my mom to from 1 NH to another (for many, many reasons). She is still negative but is walking about doing more as the new NH is laid out better for walking and she is significantly cleaner - the bathing room is big and centralized (so it is a 3 person team bathing 2 ladies at a time) as opposed to tiny in the individual bathroom by 1 staff and the podiatrist is set up adjacent to the bathing room for a once a month visit.

This NH has a very energetic activities staff - they are always doing some sort of arts & crafts, Fiesta mini parade, Easter bunny visit, getting a scout troop over to distribute stuff. I'd love to have 1/2 the energy of the activities director.....Which is great as my mom will participate and gives her something new to complain about.

Regarding your mom and politically incorrect remarks/attitude, the staff has seen and heard it all before and worse. I have found they are totally understanding about this issue.
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I can totally relate to what you are feeling. I ask myself the same question daily. Am I doing enough? My Mum will be 91 in June and until 3 months ago was still living in her own home. I'd visit everyday morning and after work, Call many times during the evening. Mum started becoming very frightened being alone and started working herself into a panic attack which led to breathing problems and a couple of hospital stays. We are lucky that her only health issues are high BP and mild cong. heart failure. Since she is so miserable at home alone, I gave in and moved her in with us. Which I thought would be the answer. What more could she want....what more could I do! Now mums not happy because she's in the house too much and "can't do what she used to." I can't seem to make her happy. We wait on her hand and foot, and she is treated like a queen. I'm now finding myself getting short on patience. I just want her to accept being old, and just enjoy every day that we have together. But all I hear is negativity and sadness. It's really getting to me. I don't know what to do to make her happy. I try to put myself in her situation and think about what it's like to be 91 and limited in ability etc. Why can't our parents just be happy to be as well off as they are?
My words are not a solution, but I hope the realization that you're not alone and we can all relate to your situation helps a bit. Susan =^..^=
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Joyce, just read your post about the dr. giving your mom ativan. My mum was given ativan when she was in the hospital and she had a horrible reaction to it. She was like an animal, trying to fight me and even tried to bite me. I was told by the Dr. after that many elderly patients have a bad reaction to the drug. I'd think twice if I were you! Susan
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Has she had enough time in the nursing home to make a friend there? Another alternative is move her into your home, in other words, bring her home to die. This is a great privledge that belongs to you and you will receive a great sense of relief and peace of mind. I gave up my home and career to move in with my Mom and saw her to her final few years and it turned out to be a truly rewarding experience. This is what I wish for you.
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Joyce you are doing all you can-probably nothing will make her happy she is so use to being unhappy it is really a shame that at the end of their lives they get this way I see it with my Mom-I can't blame my brother too much for not going out to see her if she treats him like she does me-I think I would be so glad to live a long life that I would try to be nice and appreciate what I do have but most of the time it is not that way with them-my aunt is an exception we enjoy our visits with her she tells the same stories over again but she is happy-she is 95 and lives alone she even has some JW's that visit her twice for over 20 years and offer her help because she is so appreciative of what people do for her.
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You are doing everything you can possibly do. I am sorry for you and your Mom. Mine passed away in January and although not as bad as you have described, but was unhappy to be in a nursing home. I went to visit her almost everyday. I took her food, because she wouldn't eat what they gave her. I felt so bad for her, but could not take care of her by myself. She was mostly negative about everything and sometimes that was so hard to deal with. Now, I miss her terribly and don't regret anything I did, wish I could have done more. Just hang in there. I will keep you in my prayers.
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Reading this thread just makes me realize more and more that many of us will live to an age that is well beyond what nature truly intended and there is no real "happy" ending to these stories. We give the love and care that we can and try to deal with the inevitable feelings of helplessness and guilt, even though objectively we know that there isn't much we really can do other than try to keep them safe. I am currently caring for my mom who still has her wits about her, but as her body starts to shut down I worry endlessly about the possibility of her needing full time care. She would hate it and so would I. I have worked in several nursing homes in activities and know that there is only so much that we can do to make a resident's life happy and fulfilling, especially those who suffer from multiple issues, including dementia. The only thing that brings me some comfort is the idea that our generation, and our children's generation will do more for ourselves in terms of staying healthy, exercising, keeping our minds active as long as we can and having affordable health care so that we can reach these old ages in a better state than our own parents. Having said that, I know that some illnesses and deterioration are inevitable and that we are limited in what we can offer the elderly - but much progress is being made for future generations. Peace to you.
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My mother and I were joking in a way we had her whole life.
" Place me on a Barcalounger on an ice berg in Alaska, give me a ton of Valium and just push me out to sea."
"Let me jump off the cruise ship with my boogie board and a belly full of valium."
"Watch me paddle out until I can paddle no more and then i will down a gallon of vodka and say good bye."
We planned our peaceful ending where we would no longer be a burden.
She turned to me clear eyed. "Your grandmother and your father have taught me that by the time you would really want to paddle out, you are not strong enough to do it yourself and none of us have the courage to help you... nope, sweetie we are going to have to ride this one out to the bitter end"
I remember that day clearly these days as my mom wanders purposeless through our house.
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I would call Social Services where she is living. See if they have a suggestion for what seems a very difficult situation. Explain that you live out of town and want to make sure that your Mom is receiving the best care available. Explain her dementia and her previous living situation (seclusion) and ask if they can get you in touch with the right people to help you. You cannot make her better-you cannot change her mind about how she deals with things. I am dealing with my own Mom with a lot of the same issues and one thing I have learned is that you can't win a disagreement with someone with dementia so don't try. Just make sure in your own mind that you have found the best situation that you possibly can to be sure your Mom is safe. A local care manager may be the asnwer for you that will coordinate closer with her doctor. Hugs and good luck. Growing old is not for sissies and neither is being a caring daughter-especially when you are not close.
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Hi everyone, typing is difficult.....gout in middle finger of left hand. Anyway, just had a wonderful 6 days with family and friends in Seattle. Called Mom in FL while I was on vacation and again after I got home. The conversation started out OK but deteriorated when a care giving nurse came in to ask to examine those feet of Moms. She immediately went into her confrontational mode. Whoever said you can/t win a disagreement was absolutely correct. Whew! I'm exhausted from trying to allay her fears and don't think I succeeded. She may go to her maker with those nails. We talked in circles, she is just so scared. Thanks everyone for your continued suggestions. BTW, I have an elder care manager, thank goodness, and she has been a big help.
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Joyce talk to the Dr. and see if maybe some of her behavior could be due to the meds or a combination of the meds that she is on. although your description of her personality is a difficult one but you said that she felt poorly and thats the reason she didnt want to be around anyone but her grooming seem to have been an issue. She get along with roomates but difficult with you, why? Maybe she miss you and don't knoww how to express it.She still thinks she is capable of caring for herself what have you or the dr done to show her otherwise? It is a hard thing to try to understand the road they travel when you have not been in that direction. Whatever you do don't let her drive you away keep loving her and showing her that love. You just maybe surprise how well it helps. Take care of yourself and God be with you.
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I have found you can not make someone happy if they are wallowing in being miserable-the only thing you can do is detach from them as much as you can and limit your time with them. My Mom can turn on the charm for others like the husband did and then look dagers at me-or scream in my face but now I know who the problem is with and do not waste time feeling bad about it.
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I've tried detaching myself , but then I feel guilty and feel like I'm not being sympathetic. It's a no win situation. I feel Mum deserves more understanding than I sometimes feel I can give. It's exhausting.
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Pink, I'm not sure I have the right words for this, but I'll try. And I'll speak from my own experience...it may resonate, and it may not.
My dad has been described by the outside caregivers as charming and kind. He is 180 degrees away from that with me. His way of launching conversation is to complain about something. That's a new insight for me; I just heard the complaint, and not the desire, underneath it, to be engaging with someone. To be sure, he IS complaining. He IS demanding that I somehow change his circumstances...and not just today's circumstances. A part of him believes he'd be happier now if his life has been different, and it is someone (else's) fault that it wasn't. It's unpleasant on a good day, and infuriating on other days. And in MYSELF therre is an undercurrent of sadness that I can't help this Being become happier.
When I can step back, detach from his feelings and mine, I have an easier time connecting to the finest part of his being. Whether you call it soul or spirit or the god inside all of us, or the part of you that has no thought and sees through your eyes...whatever you call it, THAT is what I mean. When I connect with him there, I am understanding of what is true in him despite all the schtuff that is being said in the moment.
Somwhen you wrote that she needs understanding, that's what prompted me to write. Maybe try this. Connecting with the swirling emotion and her fear and panic and anger is exhausting, and it doesn't help either of you. Stepping into her room, or onto the phone, after you have centered yourself enough to connect with the finest part of her being...there you will feel an understanding and connection that may soothe her (it may not, too! But it sometimes does) AND you'll be detached in a loving way. Now that may last a few second or minutes or hours.. I lost sight of it for almost a whole week, last week.today. For some reason, it's easier, I expect it will be like that dor you, too.
The ache below what she is saying is where to send the love and understanding. It took me all the previous sentences to get to that one. Love the best part of her, and see if the rest of her doesn't feel it too.
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And PS, Pink...love the best part of YOU too. And all the other parts. Love the best parts of you.
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Detatchment is not easy and it does not mean that you can not have an association with the person at all-but keep the time shorter and do not let them hammer on you or make you feel bad or that you are the problem-you know the truth and approch with power-do not let someone take your power away-take it back yourself-you will feel better and the other person will lose his orher pwer to hurt you.
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Jane, thanks so much for your post, it got me to thinking about the situation through different eyes. When I find myself being impatient or critical I feel in a way that I am protecting myself from the inevitable loss. Sounds crazy I'm sure, but if I get in too deep emotionally I feel so fragile. I've always lived in fear of loosing my parents. When I lost my Dad in 1994 the doctor put me on antidepressants. So I think maybe if I don't feel her pain I'm not as vulnerable. Even though she pushes all my buttons and makes me feel guilty for having a great marriage and a good life, she didn't have either, I still can't imagine my life without her. I dread that day. Could detatching myself be a way of protecting myself? If so I have to get over this guilt. Thanks for your well wishes. I'm so thankful for this forum. Hugs, Susan
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I do truly understand as I work for a NH and many of our dementia residents make
the families feel so bad at times because they really don't remember what they told you on the phone 3 hrs later. They down side is that we cannot make our residents take medications or even bath if they don't want to. We do try to brie them at times, if that is what works, They do love sweets etc. But that doesn't always work either. Try to remember that even if you were close by, it would probably still be the same for her, she still would not be happy and that would make you even more unhappy. I've seen it happen many times. My own mother kept telling me she was going out of state to live with other family. I told her that if she could get there, GO FOR IT. She would let it die for a while and then would start again. Good luck to you but please don't be so hard on yourself as it appears you are doing all that you can. Just end your calls to her with Mom, I love you! you will feel better in the end. God Bless!
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