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Rain mom, no apologies needed, and I can't imagine anyone is annoyed with you. Rome wasn't built in a day and all your BS ain't going away today, but you're working at it, chipping away. Keep venting, gabbing and gettin one foot in front of the other.........
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I found myself hesitant to post this morning. I find myself getting irritated by posters who get pages and pages of good advice but come back with "yeah, but..." Now that's me! Thursday when I was going to make my dr. appointment I honestly lost track of time. So I was going to do it Friday after I picked up her rxs and had a short visit. The visit actually went well. My brother was there too and I spent most of the hour watching her put him through a personalized version of "who's on first". She was messing with him - I knew it and she knew I knew and we had a good chuckle. I left feeling pretty good. I thought maybe she had turned a corner and was beggining to accept her new living arrangements. I actually had an appetite for the first time in about 3 months. Then the phone rang at 8:45 this morning. When I told her I couldn't come get her the hate started spewing from her. Someone suggested I tell my mom I had a cold to get her to back off - my brother has to have cancer surgery in 6 weeks and finally told her about it a few days ago - along with my need to have a surgery I've been putting off for a year. This didn't even put a dent in her. She is incapable of thinking of anyone or anything but herself. I won't go into the gory details of the call but suffice it to say it took 90 minutes for me to stop shaking - for my heart to stop palpitating, to get a grip. I take the calls because if I can defuse a situation vs. her getting kicked out, I want to try. I can't deal with having to move her again! I was going to visit her tomorrow but I now know that's impossible. I will not see her again until I see my doctor. As God as my witness (said in my best Scarlett Ohara voice - I'm trying to hang onto my sense of humor since my sanity is on its way out) I swear I will make my appointment Monday. I feel stupid, stupid, stupid for thinking things were going to get better. I'm sorry to you all for not acting on your advice earlier! Please don't be annoyed with me.
On a side note I did want to respond to comments regarding my son. He is nonverbal and functions at about a two yr old level. He is the light of my life and rewards me everyday with the most beautiful smile you've ever seen. My most peaceful moments are when we'll take a nap together - I put my arm over his chest and feeling his heartbeat sooths me. I am beyond grateful that I will never be able to do to him what my mother has done to me.
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My opinion for Rainmom ties into what I'm going through right now also.
Rainmom, get professional help (Mental therapy with a LCSW, psychologist, etc., through your health plan, if it covers it) to get over the guilt. I made an appointment for next week so I can get some coping strategies for dealing with my angry mother. I can't wait to see what they have to say! Obviously, we can't figure it out ourselves, and that's when we should get help. We are toxic to ourselves if we don't. They will teach us what we don't know.

In my case, I relate strongly to Parentalptsd. My mother was not physically nor verbally loving when I grew up, but I was never mistreated. I just felt "in the way". I found out at age 11 that I was a big "oops", as my mother was separated but still legally married to her first husband when she got pregnant with my father. They were drinkers and "got caught". They married even though my mom was not divorced from hubby #1. They divorced 5 years later. It was a crappy childhood.
I stayed in touch with mother all my adult life and she was at all family get togethers. She always wanted to be the center of attention.

Now, she's 92, has Alzheimer's level 5-6 and dislikes me very much. I just put her in a memory care home and she attacked me on the second visit. She loves my husband but can't stand me. The "normal" reaction would be to not see someone if they don't want to be around you. Given my childhood, my feelings are only lukewarm towards her. Hopefully, the therapist will help me deal with her.
We all have our own difficulties with this damn disease and I'll take any help I can get. Like I've said, "I'm doing the best I can." We are not their saviors. The only thing we owe them is their safety, food, shelter and basic comfort. I'm sure you have provided her that, as I have. Do not go crazy trying to be superhuman. She's fine.

I'm watching my best friend loose it all (health, mind) because she made a promise to her grandmother to keep her at home until she dies. At this rate, my friend will die first from the stress. Those nearer death should not affect the lives of their caregivers to such a point that they suffer sickness/death. At what cost is caregiving?
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Just have to tell you. When Mom needed rehab, my daughter recommended where she worked. Realized then that daughter was second as POA when I got calls for this and that. Told the facility they could talk to daughter when she was on duty. I only got calls after she was home. Really though, losing her comb sparked a call.
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By the way---sorry for double post---but my life is so much happier and more constructive after excluding my horrible toxic mother from it. I'm sure there will be a funeral at some point; fine. An additional relief. I know that sounds cold but there is deep abusive history here, and one has to live life in as positive and constructive way one can. For some of us, this requires complete cutting off, unfortunately, so as not to be dragged back in to the poison pit! I am glad others have a happier relationship, but for some of us, it is the only way to survive.
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Rainmom, I really don't understand why they would be calling you for every little thing. Can't imagine the time they r wasting calling you. Surprised your Mom can use a phone, mine hasn't been able to or over a year. If she has a phone in her room, take it out. Talk to the Administrator. Tell him/her that these frequent calls are effecting your health. That with an autistic child and a husband, your hands are full, reason why mother is where he is. The only calls you want are emergency calls. The ones they need to write up per the state. She fell for one. Maybe you can set up a weekly call with her caretakers outlining her needs or concerns. You should be told about med changes. Like said, a lot of money is changing hands. They need to handle the little stuff.
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I have a few suggestions to add to the very good ideas here. Once your mother's situation is settled, I would say to be sure and do the following things: 1)get caller ID and do NOT pick up the phone. Choose one hour at the end of the day, say 5pm, and listen to the day's "mom" messages, and decide what you will do when you reply the following day. Reduce the number of phone calls to the mom gradually: wean her off it, from every day, to every other day, to every three days, and so on. Aim for the interval that is the least stressful for YOU. 2) Don't rush to get on drugs; try some cognitive-behavioral therapy combined with yoga, exercise, and other daily self care. Give yourself a little time for the selfcare to smooth your insides out. I gave myself six months, and said, ok, then I'll go on antidepressants or anxiety meds if it is really necessary; but by 3 months of a strict self care regime, I did not need them. (And no, no guilt so far, but who knows what is ahead). 3) Make a list of the patients you are caring for in order of priority: number one, YOU; number two, your SON; number three, your mom. And keep it by the phone, and stick to that order of priority in any given decision. Let's say for example you have a regular dental checkup, you mom's NH has called, and your son wants to go for a visit somewhere, what do you pick? You pick your dental appointment, and then your son's visit, and only then your mom's NH callback, and only in the window of time YOU have set for it. This is what some therapists call "setting firm boundaries." But the main thing is, get and use caller ID to corral all the "mom stuff" into one "deal with it all" limited hour or less of your day, and ideally reduce it to once a week. Finally, make sure each day contains something that brings YOU joy and pleasure and takes your mind totally up. Good luck---this stuff is really awful.
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Every one of us has a breaking point and have to pay attention to the warning signals along the way so we can get the help needed for them and for us! It didn't take me long to figure out where my limitations lie and got extra help. I look at it as mandatory not optional. I've told my parents many times that I love them and will continue to all I can but if I'm dead I can't help them at all.

Took mom to the grocery store this week and while I was checking out I noticed a man around her age was talking to her while she was waiting. I walked over and joined the conversation. Out of nowhere he starts crying saying that his only caretaker, his nephew, dropped dead that week at age 56 and he has no other immediate family. That friends brought his ashes back to the house and he has adopted the cats. It was so heartbreaking. Told mom cherish the help you have from your daughter.
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Only child, it can be very expensive. The cost depends on the level of care. Funding is either private pay or if no money, Medicaid.
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How does one pay for these assisted living facilities??
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Just to let you know...I have felt the same exact way. My mom is in a facility and I still have a teenager at home yet. My job and marriage have both suffered. At times I have made semi-plans to just pack a few minimal things and take off to another state. It's so hard. Just stop and focus on yourself, and do not let anyone make you feel guilty. Let the caregivers take over caring for your mom, and you just focus on the really big things for your mom. That is their job. You are on your way to getting so sick that you may not be able to easily pull yourself out of it. You need to be their for you son and husband, because that is your job. I wish the best for you. I know it is very hard. You are a good daughter.
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After months of running myself ragged trying to deal with mom, I finallly had what I consider to be called a "nervous breakdown".... I was crying everyday. I couldn't even get of bed some days.... I thought there was something seriously wrong with me. Had 3 cat scans, and numerous other tests..... Finally, the doctor found out what was wrong. DEPRESSION...... Had to go on an anti depressant pill. Within 2 weeks, I was back to my normal self. This was the worst time of my life. I let my mother take 3 months of my life.... I vowed this would not happen again. I called a home health care agency and got mom an aide. She lives there with her round the clock. This is a lot less costly than a nursing home would be. I do not go over there everyday like I was originally doing. I told the aide to only call me in an emergency.
I visit when I want and have removed myself from day to day caring of mom.
If I did not take this step..... I would probably be in the hospital myself. You cannot do it all by yourself. My breakdown taught me that. My immediate familly suffered because I was trying to take care of mom.....
Please take care of yourself first. Don't feel guilty because you will be the one getting sick and mom will outlive you!
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I have a similar problem about how I feel mentally. My doc called it situational depression and prescribed Sertaline for me. It helps so much.
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If you have the means and can manage to find respite care for your son, I recommend you and your husband take a nice long cruise, the more luxurious the better. Let the staff at the ALF take care of your mother. Assuming you have POA, all you really need to be available for is to authorize changes in her level of care.
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Total typo from my phone, sorry. I definitely meant Haldol does NOT help the patient. Jeez where's the chocolate :)
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In my unprofessional opinion, Haldol is used in mental health facilities etc to knock the patient out to make it easier for the workers, but better for the patient!
I too would like to join the chocolate party, but not under a bridge. How about a great spa where we get massages and heck nails done too!
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I have read this entire thread. I am no expert, but in all my years of hearing caregiving stories and being asked caregiving advice from many friends, there had been a line of thought that had popped up on many occasssions - She'll be fine and you'll be dead. This is not okay. There is a middle ground. No one can sacrifice so much to care for a loved one to the extent that they are hopeless, health less and penniless. There is a difference between sacrificing your personal welfare and providing the best care you are able to for your loved one. This does not include sacrificing your own wellbeing for your elderly relative. Love them though you may, your life will continue when they are gone and one must prepare oneself for those ensuing years as well. Bear that in mind and that will put your decisions in greater perspective. No plan is perfect, but complete self sacrifice is a choice, not a mandate. And I do not believe complete self sacrifice is really the right thing as far as caring for the elderly goes. Care and concern for comfort, safety, welfare and general spiritual well being is the best we can hope for. Providing for their every whim like a handmaiden is only really crucial in the final days as death approaches. If one has the leisure to do it beforehand, the desire, the health and the means then God bless you if this is your heart's desire. Go for it.
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@kathy - 40% of caregivers die before the person they care for. Then there are the ones whose health is compromised by caregiving though they do not die before their care receiver. I suspect the % of those so affected is quite high. I know my health has been negatively affected by caregiving and I am a distance caregiver.
Distancing or detaching are not selfish - they are self protective. It is not good to push yourself to the point of collapsing, but you know that already, so the question is why do so many do it. We have to care for self - put the oxygen mask on ourselves first. Sounds like you are caught in the FOG. Check my earlier post for that. Let go of the false guilt. ((((((((hugs)))))))

rain - good for you. Did you make a drs appointment for you? From what I see in this forum and with my own experience with my mother often the main thing that helps at this stage of life is meds. She has vascular dementia, borderline personality disorder and narcissism and without meds is agitated, paranoid, delusional, has psychotic attacks... With meds she is calm and her life is manageable. A regular sleeping pill has been added as well as an antidepressant recently. As the disease progresses the meds need to be adjusted. Keep focussing on and looking after you.
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I am sure that people can die from caregiver stress. Let me suggest how it might happen. You keep going, being strong, unable to admit to yourself what it is doing to you. Because you believe that to admit it would be a shortcoming, or because your siblings would make fun of you and criticize you for your choice to give. And then you would move through a transition zone silent even to yourself, in which you continue to produce help and to drain yourself. And then suddenly...a physical crash would occur that you don't see coming or understand. And its all because you cannot admit to yourself that it is actually too much and could really kill you. You really cannot admit that, because of love or because of belief in self-sacrifice, or because of hope that it could be OK someday if only you tried harder or did more. Or because, well for me, you really hate to think that you could collapse from stress or let it get to you or fail to continue. When I ask "is she worth it" I am sure the answer is NO...yet I keep draining from my own life force and view the distancing as selfish. So its a constant internal battle for me even if I know the obvious answer: that life is ending for her and its not ending for me, and I have to rescue myself first and foremost. It might not be over for a long time, many years may be ahead. But I cannot choose to die from this, and sometimes I push the line too close with stress and involvement. How do I cope? Sometimes not well enough, which leaves it to my body to collapse, which is not good.
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Which bridge is that party taking place?
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Babalou, excellent advice! As well as everyone else, hope this day rainmom got the support she needs. Tomorrow is another day, we will still be looking out for you, Rain.
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Rainmom, just remember , the meds are for the docs to figure out. Have them call you when they've done their job.

At one point the folks from my mom's facility were calling me everyday at work, I really never found out why. I sat down with the social worker and told her that my brother or I should be called in a medical emergency. That I was not transporting my mother anywhere in my personal vehicle since she tried to grab the steering wheel out of my husband's hands. That I couldn't push her wheelchair because my knees are both bone on bone. That I couldn't take my mother to outside dr appointments without an aide because I can't talk to the doctor and tend to my mom's bathroom needs and anxiety at the same time. You know what? They listened.
YOU are not the expert here. They are.
Ask them to call you when they've figured out a medication regimen that works.
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Rainmom, I'm not impressed with Ativan for dementia. It did not help my loved one, but she did wonderfully on Cymbalta. It's for anxiety, depression and pain. It has brought her so much contentment. It's amazing. Different things work for different people.
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Rainmom I am coming late to this party, but just want to say, I am so sorry you have to be experiencing all of this with your mom, and also your son. Do you receive any help or support from siblings?
Everyone has already given such great suggestions already....but one thing to keep in mind, is that some day, she will pass away, and you will miss her (hard to believe that). So be sure to keep the big picture in mind. My mom is gone now and I had spent so much time & energy taking care of her needs (multiple phone calls some days, yes) that now, I find myself not knowing what to do with myself. Except that my (rotten) siblings are making my life miserable over the estate proceedings.
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I have some ideas for techniques re: phone that might help somewhat. The ideas are say outside of the box so I hesitate to offer them. Private message me when you are in a receiving mood, and I will share.
Does your son ever answer the phone or talk to grandma?
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Lol, GardenArtist - my mom already thinks the man living in the room next to hers is plotting to murder her! Poor guy looks to be older than dirt and wheelchair dependent.
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Given a choice for a loved one, I just guessing here, since mom was/is combative at times, they are bringing in the big guns (haldol). I am not a doctor and cannot give medical advice, but I have read here that Seroquel made a significant change for someone's mom. If you can consult a geriatric psychiatrist for at least a second opinion. There are severe side effects to most any antipsychotic meds, even ativan is contraindicated for some (but this you will discover). Ask your own new doctor about all your worries. Keep checking back.
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RM, it's been a while, but I believe Haldol was the med that caused my aunt to think my mother was a murderer. Or maybe it was Ativan. This was over 15 years ago so my memory isn't that clear other than I was shocked when I learned what disturbing effects it had on my very passive aunt.

I would ask the prescribing doctor when you could expect that the Ativan would be effective, give it a chance first before trying something else.
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Rain mom, you're cooking now!
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Quickie update: three phone calls, all initiated by me. Got mom an Rx for Ativan and haldol. If I can get her "behaviors" under control at the new place I'm sure some of the crisis calling will stop. We've been using the Ativan with some success to ease the initial move but after a few days she shows no improvement in accepting things - without the Ativan. So I had to get that rx extended. The haldol was the Drs idea. Has anyone used that with any success?
I'm going to get a dr. appointment for me - by the end of the day. The comment that me denying the need for help is exactly what my mom is doing - well, that hit home.
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