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It does not appear that you possess the health or stability to be involved with your mother's caregiving. I would take care of yourself and give the responsibility to your sisters who are better able to handle the situation. You have siblings so you have an option of opting out of direct care or supervision of ALF or NH care. Be thankful the siblings exist.
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She is aware enough to know she cannot take care of herself but moving to a nursing home is a huge adjustment and when she actually got there the reality hit and scared her. Insist she stay there for a couple of weeks. She will adjust and will probably come to enjoy company her own age and knowing someone is always there to help her. The same thing happened with my mom. Within a week she was acclimated and happy.
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I hope for the best for you and your mother. I feel like you fell into the trap. Except that generally it is "I want to go home." I bet your mother is already calling you, wanting to go to the nursing home, again. Many elderly aren't happy and nothing that you do is going to make her happy.
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Honey you don't owe anyone your life. I used to work in a hospital and remember we sometimes had older patients that no one would visit. Coworkers would say why don't even their children visit them. Though nursing and listening to others, I've found that not everybody gets good loving parents, far from it. They reap what they sow. Just do the best you can. hand her over to your siblings long enough to get yourself together. She needs to live in an assisted living arrangement. Then you just need to visit enough to make sure they are taking good care of her.
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You can report her to Elder Abuse! You can report someone who can't take care of themselves, can't be dealt with, as abusing themselves, and they can be ordered to go to a nursing home. Just so many things to know about when we get older and in the position of having to care for parents. If she lives in a house, whatever you do, don't tell the insurance company that no one is living there and you don't think your mother is coming home as they may cancel the insurance on the place! That is how it is in Florida, not sure about where else, but it would probably be the same in most places. You have to have her declared incompetent, but the anti-anxiety meds also sound like a plan. We all need to talk to our kids before this all happens to us and tell them what they may have to do. We need to write down things so they have documentation to relieve the guilt. It is not easy to take mom to a NH and leave her. But you sound like you have your own problems and need to put yourself and your daughter first at this point without feeling guilty. Your mom will be somewhere where she gets 3 meals a day, has company if she wants it, and people to take care of her needs that it can become physically difficult as well as mentally exhausting for you as you age yourself.
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I'd leave her in nursing. You could let one of the siblings take care of her, but then you'd just have to hear them complain all the time. She'll adjust to nursing care and they're professionals in dealing with personality disorders.
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zee5509, welcome to the "only child club"... I believe guilt is our middle name because we don't have other siblings to run ideas by, and other siblings to talk to our parent(s), like safety in numbers.

I always felt I had to drop what I was doing and drive my parents to every store in the city. That was until my psychologist told me that my parents were the ones that made the choice to continue to live in their single family home instead of moving to a retirement village.... thus, my parents need to take the responsibility for their choice.

I dread the time that if my Dad passes on first, there is no way my Mom can live in that home, she's scared to be alone.... having a stranger come into the home to help her I know she will resist as my Mom doesn't trust a lot of people. Dad on the other hand would be happy to live in a tent in my backyard, so I know getting him into a retirement village will be simple, more people to tell his *stories* to ;)
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Trying, with many, there is no escape or rest until they die. All we can do is try to distance ourselves from it before they put us in an early grave. I've avoided my mean, manipulative, spiteful, narcissistic mother (Mommie Dearest has nothing on her) life long but, out of duty, I moved to care for her, living in her freezing cold gloomy basement, constantly verbally abused, with no income to wait on her hand and foot 24/7/365 for four hellish years. I gave up a beautiful condo over looking a lake and a well paid job on Bay Street With Parkinsons, stroke and dementia she's been in a nursing home for 18 months now.

This week there's a woman from the Ministry of National Health visiting and asking the residents if they had any concerns. Yes, said my demented mother, she didn't know where the money went from the sale of her house (she was updated all the way) so I was summoned to appear at the NH to show all paperwork and where her money was and had gone. I was made to feel like a common criminal. I have POA and have always preserved her money, living below the poverty line myself for the past five years.

Once assured about money she went on and on about her furniture, how lonely she was and so on. Well, she stays in her room, in bed or a wheelchair 24/7. I told her I was not responsible for her happiness, neither was I responsible for finding friends for her, she had to go out the door, get into activities and make it herself. Of course she won't. The activities directors will be told to go get her for activities . She may go once, if at all, but even if she does it will be a one off because "I don't like it" and they will eventually stop trying to include her so she will stay in her room with the door closed until she dies.

I've done all I can. Tonight I'm pretty much in shock. I haven't eaten at all today, don't want it. Trained by Madam from a small child to put up and shut up, it's hard for me to let go. I really need to sob my heart out but I can't do it yet, it just won't come.

My precious animals are taken care of and maybe soon. Tomorrow is another day but I won't visit. I';m done.
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Thanks so much for all your thoughtful answers to my question and my dilemma with my mother. I'm sorry it's taken me so long to post again. I feel bad, because in my desperate and sleep-deprived state, I posted some incorrect information and didn't realize it. The facility I took my mother to was not a nursing home - it was an assisted living facility where my aunt lives. Mother had visited there with me several times before, so I just assumed she remembered what it was like. That was really stupid on my part because she has some dementia and forgets things easily. Another incorrect thing I posted is when I said "I wrote the check" which made it sound like I used my own money. I didn't - it was on Mother's account so it wasn't my money. I did have to give them my own credit card information, though, because they required that one be on file and Mother doesn't have a credit card. I didn't intentionally post misinformation, but I was so distressed when I posted and I had only slept a few hours for many nights in a row - those are my only excuses. I'm sorry so many people spent their time posting helpful answers based on the faulty information I provided. Mother had been begging me (and my brother who lives a few hours away) to take her to a nursing home since her knee had been troubling her for the last couple of weeks and she was having more trouble getting to the bathroom. My brother and I did tour a nursing home, but the residents there all seemed to be either bedridden or in wheelchairs, while Mother uses a walker. We decided on assisted living because she was in better physical condition than the residents in the nursing home and also because assisted living said she could use a wheel chair when needed and could also get physical therapy on her knee there. In retrospect, maybe my mother knew better what she needed than we did, because on Friday (2 days after she insisted on leaving assisted living), my sister had to take her to the ER. She was having periods of delirium alternating with periods of being lucid. She's been in the hospital for 5 days now and tomorrow, they say she will probably be ready to be discharged and transported to a skilled nursing rehabilitation center. I suppose she needed more help than we realized. The doctors at the hospital did lots of tests and she has no physical reason for the delirium (such as infection or fever) so they said they believe it was brought on by a combination of her dementia and knee pain combined. They had her on narcotic-type pain relievers the first few days and for the last two nights have had her on an antipsychotic. She was much better today - more like her normal self. An orthopedist is going to give her another cortisone shot tomorrow (one in each knee) and the doctors hope that a few weeks of physical therapy in the rehab center will help her get back on track. They said afterwards, we will still need to decide whether to have her live at her home (perhaps with in-home help) or to have her live in either an assisted living or skilled nursing facility (depending on her progress and condition). Hopefully, there will be medical professionals at the skilled nursing rehab facility that will help us decide what is best for her, instead of us trying to figure it out on our own. The conflict with my siblings is still bad. My brother and I have believed (for years) that Mother shouldn't live alone, but my sisters were against her getting in-home help or going to any type of facility. I believe they want to preserve their inheritance as they both really need the money. They say that's not true, but I can't see any other reason for being against hiring help (especially in-home help) for a 90 yr. old with severe balance problems and dementia. I told my eldest sister that she would not let any of her grown children live alone if they were in our mother's condition. She won't even leave her pets for more than a few hours at a time and they are in great shape, so I don't know why she thinks it's okay for our mother to be alone. I can't remember if I mentioned it before, but I have Healthcare POA and my brother has Financial POA, so I suppose we could make decisions without our sisters' blessings, but we've been trying to keep the peace and also we've been trying to let Mother make her own decisions since she isn't (or wasn't) completely incapacitated. It's so hard to know the right thing to do. I want Mother to be safe and I want her to be as happy as possible. To be honest, the conflict with my sisters causes much of the stress in this situation, as they believe they know best about everything - they even think they know more than the doctors. I do feel hopeless every single day and I really don't feel I have a future. I feel like my life, my husband's life, and my daughter's life have been taken hostage by the whole situation. Life is never easy with mental illness, but it's almost unbearable with the added stress of all this. Thanks again, everyone, for all your help and support.
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Wow. Reading all the stories here, I feel relieved. Having dealt with a mother who was a royal pain, and her leaving me to care for my mentally handicapped brother with no funds (my other brother has leukemia and my father died 10 years ago and left $14,000 to care for my handicapped brother) I have come to realize that there is only so much one can do. Not only does it affect your own life, but those around you as well. I have nothing nice to say about my parents, but I can only do what I can do. There are NO facilities for mentally handicapped adults, and if there is one somewhere, I can't afford it. While he is NOT in the perfect place, I am doing the best I can. He is well taken care of, but, he really needs more outside stimulation, which is not cheap. I just hope I can prepare my son to deal with all this and not hate me for leaving him a mess. If I die before my brother and my husband, then the burden of care falls on my husband and my son. Life certainly sucks sometimes. I take it one day at a time.
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Panamacarol your brother can become a ward of the state, so financial care may be covered. As far as expecting your husband and son to 'care' for your disabled brother, dont bet on it. While tou are alive, be sure his current institution will care for him, or find out what will happen after youre gone.
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Trying: You and your brother have control of the situation, I would assume because your mom realized at some point that she could trust the two of you to work together and make decisions that were in HER best interest. I'll pass on to you what was told to me starting when I was about 10 years old--your parent's money is THEIR money. It will be used by them and it will/should be gone by the time they die. Make your own way in the world. It was a great message that my parents gave me; everyone I know who has lived with the expectation of any inheritance has ended up destroyed by the experience. Read Bleak House by Dickens. Listen to the discharge folks at the hospital; they know what they're talking about. And get some sleep! You can't take care of your mom or make good decisions when you're sleep deprived; this is not a luxury, it's a necessity.
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A few thoughts for Trying - no apologies needed, you didn't intend to say it wrong - I got nursing homes and assisted living facil confused for years. Some have them linked - so elders can stay in ALF and if they lose abilities, can then go to a nursing home at the same facility, which seems good. I hear your frustration with your sister, and how you told her of that - don't hear if you focused on asking her why she doesn't want the helpers hired. It's hard to have family conversations, and patterns of reactions just jump right into them, but it can help if you tell her you want to understand her reasoning or feelings and ask what are her objections. Hold back your ideas until you've heard more of hers. And maybe ask her how she thinks you and she can resolve this - and tell her you'll think of it, and take some time with that. It may help you get more on the same side, even if your ideas are different.

And lastly, seems to me this confusing period can go on for a couple of years, for the process of change and identifying needs, does take time. I understand our struggles to preserve our own lives, but there may be some relief from trying to plan to manage through a 1-2 year process of questions, rather than trying to decide all soon. But with that time, you can explore facilities, learn about sib preferences, maybe find some ways sibs can help that are different from care help or planning. I went through a very difficult period of about 4 years, when I kept trying to support my disabled brother's independence, and take him on overnight trips, but it became really difficult to do all the things he needed and eventually I realized, after several failed attempts, that he needed more care, and I could leave him to a nursing home. The process of setting it all up matters - it can help to include regular time outs for you, times with just no planning, just meditating or extra relaxing, and be good to yourself, so you will feel proud and satisfied of this process through major challenges. All the best!
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Panamacarol - I'm like you, caring for a disabled brother - responsibility was left by my family - I volunteered originally, when he was 24, expecting to help him for a few years, to get started in adult life - turned out he had major disabilities, and once I saw how much he needed some consistent person in his corner, I stayed. It has been a major job to deal with my other siblings who guard the money left - and tend to dismiss me. I made big progress, but over many years. But I understand and accept that I could only do what I could - I promised to try to help if he asked, but not to "save" him. Did my best.
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Sorry - one other point to Trying - it's not a ridiculous idea for someone to doubt the expertise of doctors and even professionals. Their advice is one way to handle things, sometimes applied to standards when people are not standard. We all used to live in closer villages, and good care can come from informal settings. But there comes a point where informal care is not enough - no matter how goodwilling neighbors might be, they will not plan a regular schedule, so hired helpers, even starting at 4 hours a day, to get the person up, clean, dressed, just help with light chores - and a little socialization (I work for an agency that provides those things) - can make a big difference. In the meantime, keep looking at live in residences, and find one you think is a good one (maybe near your sister! or near you..) so when care needs get worse, you can change the arrangements then.
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It's almost 10pm and I've just gotten home from getting Mother from the hospital to the nursing/rehab center. It's the hardest thing I've ever had to do in my life. It would be one thing to leave one's mother at a facility if they knew how to get help, but my mother's dementia and confusion is so bad that she can't remember to use a call button. She can't even remember that she can't get up to go to the bathroom. We told her over and over and over again that she has a catheter and we showed her the bag several times, but she just can't remember. When we show her the bag, she then asks what she has to do to get the urine to go into the bag. She asks all the same questions and says the same things over and over again so matter how many times we answer.

There was an older lady there with a bald head - I imagine she'd been through chemo. She asked me for help because she'd soiled herself and she used the call button but no one came. I asked for help for her two separate times, and then finally when I saw her sobbing across the hall with her face in her hands, I asked for help for her a third time. It broke my heart. I guess the staff was doing their best - they've had a flu outbreak there and it was the nighttime hours when we arrived (they didn't have a free bed until then) and I guess they were just overwhelmed. But it was hard to leave my mother there when it seemed so hard for the lady across the hall to get help.

The ironic part is that one of my sisters who has been so mean to me actually came to the hospital this afternoon and she stayed and went through the whole process with me. I'm so glad she did because I truly don't believe I could have made it through this without her. My brother left and went back to his mountain home around noon today and even my husband just went ahead to church tonight as he regularly does on Wednesdays - it never even occurred to him that this might be one of the hardest things I've ever had to do and that I might need him to go with me.

I don't understand men at all. It reminds me of that movie, "Steel Magnolias," where the woman's daughter is dying and all the men in the family (the daughter's dad, husband, and brothers all had to leave the room). Only the women stayed until the bitter end.

My father died quickly and without warning and while I know it's hard on family not to be able to say goodbye, I think it's so much better than watching a family member slowly losing her mind and having to trust strangers to assist in caring for them. Maybe tomorrow will be better.
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Dear, dear Trying. I cry to hear your story of today. Yes, I have been there, done that. And cried and cried out. Seen people asking for help, staff don't come quickly, and I've spoken up and been shut out of a job because I had an attitude when I spoke up. Family care for an individual very differently than staff in a home do. I am so glad that sister was with you, so glad. You can validate each other's stories. I agree also about the men, and cry over the same things. Your writing should be saved and published. Men interpret their role as organizing things or paying for them, not going through the details of them: they delegate that to others. They don't realize, and women don't realize the loss of their company - until women go to the hospitals or to an institution, and the men are not there with them.

All that said - the nursing home care does handle some things reliably, and that is what they are useful for. There will be staff awake all night, and they do go from room to room. They do need or expect people to have to wait, and that's not usual in families, but it is not fatal, for the person is lying down and can rest., it is just a change. Sometimes patients have to make a scene to be listened to, but when they do, their needs will be documented, and they will get to know your mom's style of asking and will meet many of her needs.

As family, you can demand to see reports and ask them to be more specific. Some medications make anxiety worse and that can sound immediately demanding, and staff are used to such demanding requests, and nobody can run and answer every craved call, so many are left to wait, and it sounds awful, to any caring person. I dislike medication for that reason, to me, they exaggerate some feelings and communications, like an alcoholic. They anesthetize but also distort. At the same time, many anxiety calls can't be answered immediately, and you saw yourself, giving your mom an explanation about how the catheter works didn't do the trick - a few minutes later she asked again, so running to help doesn't always help - you actually want someone just to sit there a while, so the person can calm down. She doesn't need to understand the catheter for it to work, and staff will also explain, that it's already working. So, patients do learn te routines, and how to navigate.

But no one, not even you, can be available 24/7, so care must be spaced out. Your mom will find it difficult, but I hope she will also survive it and find that she is actually more able to adjust to new situations than she or you would expect. And there are many caring people there, not all of them professionals - many sub staff listen, comfort and help. And when you are able to get your own rest, you will find you are able to be more helpful, rather than less. You will get a better feel for it all over the next week.

That will give you a break and time to ask questions, and even to look around for alternatives. Some families hire a personal aide to stay with their family member in a nursing home - someone to come immediately and reassure.

So I just send you a prayer, and encourage you to get your rest and watch the situation as best you can, and tell your husband and ask him to help you watch it closely. Talk with staff about it, and keep us posted here, and see what you think after a little bit. I taught my sister, when she was in a mental hospital, how to improve her care by saying thank you often - that does work, for arguing patients are not always understood - but family can argue for them.
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Hello Trying - I hope things have shaped up a bit by now? If you took your mother out, then you must be extraordinarily busy - if you kept her there, then you will have had some better idea of how the home can help, and ways that you and your family can plan to add what they lack. Thinking of you, and looking forward to hearing how you are all doing. I identified with the difficulties you found, didn't mean to say they are impossible, hope you have worked out some plans to get the care and share pieces of it.
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thank you, but things are definitely impossible. nothing is ever going to get better - everything is going to get worse. there is no hope at all. and nobody in my real life cares enough to help.
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All of us here on this site care. We know your pain. Please recognize there is always hope, but sometimes we are too depressed to see it. At the risk of "nagging", let me again suggest that you see a counselor, if for nothing else than to have a safe place to share your feelings. If nobody in your real life will help, remember that many don't even have anyone in their life to help. You can do this.
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Hi Trying. Glad you answered. I know it's a scary time, and depressing in many ways. I may have replied with too much understanding for the negatives, for it is hard to compare an ideal care, to what different shifts provide. But it can be important to remember the good parts of this: is your mom still in the home? I hope so, for one of the good and necessary things, is for you to have time to step back, for it would take your whole life focus to try to provide all the care yourself - and even then you would find that your mom had times of fear or depression - just that you would have less time to recuperate, and that is really important time, that can help you give more love when rested.

And the frustrations with the men not being involved - sorry, I can jump on that one quickly, for I do think we've allowed men to stand back from care process, but I husband to go with you, even once, or once a week - something specific. It's easy to give up when it doesn't happen, and they don't sense the need as easily as you do, but if you ask and say it's important, they will try to show up.

I found it surprising and disheartening when I ran into the difficulties in explaining my worries to the men in my family, when I shut down my brother's apartment, ending a way of life that had involved him as an active person nand me, over 30 years as I managed his care in the community My other brothers could not understand, or know how to respond to my fears and loss.

What they understood was that my brother needed more care than family could provide, even if they didn't understand all the details and losses as I saw and felt them. They saw the glass as half full, while I was caught up with the losses, some of those my own at the changes, and I resented the lack of support.

But it is now 6 years later. I found the people who work in the home are often caring and they provide supports on a daily basis. I found that my brother does turn to them, and they rise to the occasion, and listen to his concerns and his interests.

When you think of your mom's interests, other than just being with family - is there any activity that she has enjoyed over time? Can you make a list, for the staff in the home? Make a chart with some photos? Make a broad timeline of her life, and bring it to share with her, and find a place to put it with her in the home? This could help both of you face that getting older is very sad, but you remember her and value her, and it helps some of the staff there to notice who she has been as a person. They also are individuals who have lives, and there will be moments of joy and fun - it is not all misery!

And yes, do talk with others outside your family - anyone I think, for the aloneness is painful, and sometimes family are not the most able to meet our fears or pains, we can overwhelm them, or they can run in fear of overwhelm. But others can offer an ear, a story, a shared grudge, a laugh. I put my brother in Maine, for he did better in a country setting than near me - and I loved staying in the motels as I went to see him, and I complained to the motel staff about my difficulties, and many understood, for they had dealt with the healthcare system, or had vulnerable relatives, or were just around, when I wanted to vent, and they cheered me on in their own ways. I liked that.

It took a long time, but I learned in the end, that the nursing home did not mind my hollering at them, they assumed this was my role, and they tried things I suggested, and found that they helped with my brother. He grew more familiar and had his favorites, and even over time when staff changed, he always knew some others who cheered him on - it can be good to involve more people in the many challenges of care.

I know about the losses, but if you seek people to share them with, not put all the pressure onto your own family, you may find that you are surviving and so is your mother, and broadening the ways people help both of you. Keep posting here, no matter how it goes! All the best!
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sorry, my computer sometimes skips and jumps and leaves out words. I meant to write that if you ask your husb for something specific, even to just go once, to see with you how things look, or to ask you to write a list of your fears, and share it with him, you could both write out your own versions of the good and the bad things around this - structure a way to share, not expect him to understand, when that can become frightening to him as an overall expectation, but you may both find it manageable if you find small pieces that you can share.
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Thank you. I've been in therapy (including medication, "talk" therapy, and CBT) for forty years. I'm chronically depressed because I'm so sensitive to medication side effects that I can never get up to a therapeutic dosage of medication. Last time I called my psychiatrist to tell her I keep wanting to kill myself, she said I should find a counselor or therapist because we can't handle the problem with medication alone. I called and made an appointment for April 1st with the therapist she recommended, but I doubt it will help. For one things, I've been the therapy route before, and for another, the therapist sounds weird on her website. Among other things, she does regression therapy for people who've lived "past lives." That sounds at little nuts to me and I'm a mental patient myself (OCD, depression, anxiety). The regression therapy doesn't sound nuts, but "past lives"? That's just a little "out there" for someone of my age and background. I know I'm spiraling down really fast, but it's obvious to me that my psychiatrist has given up on me by brushing me off when I was thinking of suicide every day. My husband is angry with me because I can't settle down and be "happy" that my mother is now in a skilled nursing/rehab center for a few weeks. She keeps calling and she doesn't know where she is or what's going on and the folks who work there aren't very helpful. They told me this morning that the doctor was actually THERE and might be seeing my mother for this first time today. Then later, another nurse told me that he was NEVER there today. That's indicative of the way they've been since mother was transferred there from the hospital on Wednesday night. Everything they tell me seems to be consistently inconsistent. I feel like I'm losing my mind. All I've done today is cry and cry and cry. I did finally go to bed, which is something I never do during the day. I guess I was trying to hide under my covers and I did sleep a little which was good since I've not been sleeping much. I really appreciate all the suggestions, but after forty years, I've come to believe that doctors such as my psychiatrist are useless. She should have put me in the hospital. I haven't been hospitalized for my mental disorders in over 30 years, but I think I need to go back. I'm not going to call her again, though, because she made it clear she can't help me. Thanks again for caring.
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Hi "Trying, trying" don't forget your name here, it's a good one!

Glad to hear you explain a bit. I can see how you are facing questions in different settings - both for your own therapy and a change in therapist - and changes often bring up new fears and questions - tiring and worrying!

I left a therapist last year, after lots of progress for two years, but later I was dealing with new issues and felt she didn't keep up with my changes, but even though she agreed with my choice to stop - I wondered.... maybe she was actually sick of me, and glad to see me go?

I think questions around changes are normal and natural, part of our mental chatter, and we need to remember that change is not easy, and yet sometimes it's healthy. I like some of the AlAnon literature, which supports people in focusing on our own self care, and doing our best.

Maybe you can tell your therapist that worry about loss and rejection - I made an arrangement to keep meeting my therapist once a month during the departure process, and was relieved that she was glad to agree.

I've grown by struggling on my own, and looked for new ways to break down my wishes and find helpers (I joined a writing class, which has helped me enormously, as we all share our writings, and often sound great! Helped me feel part of the human race of community people.) I also got that therapist when a different one said that she would be better for me, and she was, so pray and believe in yourself some, that you can sort out answers as you go along.

I'm not surprised if you needed extra time to rest and sleep - it's tiring to go through questions and fears in the middle of changes, even if your husband thinks you should be feeling more "happy". Tell him maybe you will, when things have settled - in a month or so!

One thing my past therapist said that helped me, when I continued to feel so afraid of my apparent failure to find a new career and she said, "why not designate the next year as an exploration time?" That helped me a lot, to see the ups and downs as part of the process, not ends in themselves. You are not confined to only those two therapists - even when you see new ones, you can keep checking on the internet, and follow leads, and see if something else seems good - just give the new one a chance, and don't be too hasty.

Lastly - lots of different staff in the healthcare system do say very different things. Don't you think you are losing your mind: it's THEM!! The system is often crazy! :)

The system is fragmented, and I'm glad I've learned to take with a grain of salt the words of those who are negative, and have learned that different ones you reach at different times, give different information and ideas. It is far from perfect, but I agree with your husband, in the home IS a place where they are watching your mom's sleep and food and care, so you can take the breaks you need, and after a month or so, you will feel more familiar with what they are offering there, and I hope you will find some staff who are more helpful than others! Notice the ones who seem wise and calm and kind for you, and ask them about whatever questions come up from the others.

Sending you good wishes, a cyber hug, and a prayer as you go through this.
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