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My mom has been in AL less than 2 weeks. I can hardly take her anxiety levels anymore. I’ve put my life on hold to be her caretaker, ever since dad declined and was hospitalized in 2020. Actually I was caretaker for both, although he died in LTC after 10 months hospice. She’s been riddled with anxiety and mental problems ALL my life. After dad died I heavily tweaked her world to care and keep her healthy and entertained while living at home. She’s been thoroughly evaluated medically and she’s not physically handicapped and scores high cognitively. She is manipulative and emotionally draining. At the start of July she began dialing 911 all the time. She didn’t want whoever stayed with her to sleep or to leave (she dials 911 immediately when you leave). She loudly howls “help me!” in the middle of night and wakes you up, then says she doesn’t know what’s wrong. After 2 hospitalizations and 2 different rehabs within the last 4 months she’s now in AL and the nursing director is not sure they can meet her demands. She said, “Your mom knows how to play the victim and I’ve had to tell staff to set boundaries.” She wants to be pushed everywhere in a wheelchair even though she walks just fine, she says she can’t.


Anyway, today PT called me to say they met mom and their recommendation is that I should be more "supportive" of her because my distancing is giving her anxiety. lol I’ve been supportive ALL MY LIFE. I listened and thought, “How do I start to explain ALL I’ve done to be supportive of her? What about me?” and I kind of felt like I couldn’t breathe when they said that. Has anyone else been told such a thing by “professionals”? I mean, I’ve gotten that type of disregard from a tiny handful of friends & family over the years who just want to stay in their fairytales about what this kind of caregiving takes out of you. I just want to hear how you got over advice like that from the “medical world”.

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I was told something similar by a nurse. Not so much directly but indirectly, if that makes sense. I made it clear "I cannot take anymore! I have been putting up with this my entire life. I am not young anymore. " After taking a good look and coming to the realization that my mother has SIX people at her disposal, I walked away. I am stilling living in the aftermath and have started therapy (something I have never done) for my ever declining mental state. People that don't have demanding, narcissist parents always have the "Just do this, just do that" answer. Well, let me tell you, it just isn't that simple! Not with these types!
Do what you have to do to take care of yourself. As long as your mom has care and is safe, YOU first. If you can't take care of you, you will be nothing for her or anyone else. Walking around the shell of a person you used to be, will benefit no one. Remember this: Your mom is in the latter years or possibly months of her life. You still have years left and a future ahead of you. Don't forego your life and mental health so that she is comfortable. It sounds like she won't be no matter what. It may seem selfish, but your own health will suffer if you do not stop, rest and breathe, do nice things for yourself and schedule her on your calendar around your life; not vice versa. We will survive this but we have to take charge to ensure a good and healthy mental and physical state for ourselves. Good luck!!
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Reply to Gooddog
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In what world is a PT an expert in psychology or psychiatry?

Why did they DARE to give you advice in this area?

They have NO IDEA what you have been through, and need to stay in their lane. A PT gets to advise you on gross motor movement, and other things in their areas of expertise. THAT’S it.

Throw their advice into the trash, where it belongs.
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lealonnie1 Nov 10, 2022
Amen sister
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You get ‘be more supportive’ again, my suggested response would be ‘that’s not possible’. Followed by ‘If you think that she needs more support, please provide it as part of her physical therapy’. Repeat. ‘I cannot be more supportive than I have been for many years. My only option at this point is to be much less supportive. Please deal with this in your PT’.
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InlandMeg Nov 10, 2022
Lol that’s great I’ll be memorizing that.
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My aunt was acting exactly like this when her Alzheimer's has gotten pretty advanced. Her phone had to be taken out of her room in AL for calling 911 repeatedly. My cousin was told the next time her mom called 911, they'd be sending out a BILL to cover the costs associated with all the wasted time. My cousin immediately removed her mother's phone and that was the end of the 911 "emergencies" that weren't emergencies at all.

It's interesting the nursing director is onto your mother's shenanigans, yet the PT called to shame you about not being supportive enough of her? I would have had a serious Come to Jesus meeting on the spot with that PT who obviously has no experience with manipulative elders! Ugh, ridiculous.

Then I'd have a Come To Jesus meeting with mom and tell her she's THIS-CLOSE to getting kicked out of AL. Which means it's off to Skilled Nursing next and that scene will be way less comfy for her than the current set up. So cut the crap NOW mom or you'll tie my hands to the point I'll be unable to rescue you this time. It's time to pull on your big girl pants and play by the rules now. Walk on your own, stop calling 911 or get your phone removed and then off to the hospital you go for a psych evaluation. Because anyone in her right mind DOES NOT EVER DIAL 911 unless there is a real emergency, and that includes YOU mom. If you continue painting a picture of me being The Devil, then I'll also have to stop coming by to visit and help you. Your choice how this plays out.

Forget about getting over the PTs advice, and focus on what the next move will be for mom if she doesn't cool it and fly right.

Call her PCP also to make him aware of this outrageous behavior and get his advice. Are meds called for? A psych evaluation he can order for her? A session with a geriatric psychiatrist? Mental illness is obviously at play here, so the question is how to dx it and then treat it.

For your sake, keep notes of all the ridiculous behavior so if/when the time comes, you'll have a journal of how she's gone downhill which could help the doctors with a diagnosis. Your mother is in managed care, so you don't have to anything for her at the moment. Look after yourself is my suggestion, and take a breather from all the histrionics she's caused for so long. I had a mother like this and was dealing with her from 2011 - 2022, but she DID have dementia. As an only child, my parents whole lives were in my hands and it was A LOT even though they were in AL. I get it.

Sending you a hug and a prayer for a solid plan of action and very strong boundaries to deal with a VERY difficult mother. Tough love is best way to go, in my experience. If you give these women an inch, they'll take 5 MILES! Then your health is in the toilet while she's playing the innocent "What Me?" card. 🙄
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InlandMeg Nov 10, 2022
Good advice about keeping notes. I’m pretty good about keeping financial records/receipts. I should start a journal dedicated to my interactions with her situation.
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Your mother is mentally ill.

Send the PT to talk to the Exec Director.

Have your mother seen by a geriatric psychiatrist for meds, and possibly a psychiatric hospitalization for a full work up of her outlandish behavior.

Has she had a full neuro-cognitive workup (as in 3-4 hours of paper and pencil testing by a geriatric neuropsychologist)? Not a 10 minutes SLUMS or similar dementia screening?

I think you might also benefit from finding yourself a good therapist who can be a support to you during this trying time.

(((((Hugs))))) and welcome!
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InlandMeg Nov 10, 2022
Thanks for your hugs! and yes I scheduled a psychiatric intake appt for her which is in 6 weeks. Also the nursing dir requested a sedative prescription, so her primary did that and also doubled her antidepressant. Her mental illness was evident well before I was born, according to family members.
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I came across the term 'Fragile Narcissistic' on the forum once - describing a certain type of dependant personality. Some people are just more dependant on others, for solid things like housing, money or for emotional needs. Lack skills, confidence, were delt a fairly poor hand in life & had to battle. Many reasons.

The Fragile Narc was that extra layer on top.
Narcisstic: always all about them.
Fragile: very limited self-soothing skills.
Prone to emotional upsets of grandious scales. Lack of resilience I suppose it could be called.

Needed some good hard chats when younger. Now stop that. Settle yourself, chin up, march on! (When they really can't, roll into a ball for a bit then try again) Taking responsibility for their own feelings seems to be the underlying thing. Not just spew it outwards & expect the world to swallow it for them.
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InlandMeg Nov 10, 2022
That’s great! I think fragile narcissist pretty much describes it. Thanks! Glad for a term.
As the middle child in a family of 7 siblings her nickname was Whiner. About her, the siblings would sing, “grumbling on a Monday, grumbling on a Tuesday, grumbling the whole week through”.
At 10 yo she prayed that she’d stop whining and felt her prayers were answered when her Mother remarked that she thought she’d heard fewer complaints from my mom that week. My dads younger sister went to HS with her and told me she knew something was wrong at 14 yo because my mom was so self-absorbed with her “feelings”. She was an A+ student and literally freaked out if everything she did was not perfect. She was beautiful and very musically talented. So my dad married her - despite some big cautions from his family and from her oldest brother. I really think she needed more help than prayer. She was too afraid of taking risks for fear she would not have perfect results. Every one of her siblings except one had mild to severe mental illness the worst being bipolar+schizophrenia. The mildest being highly anxious.

So probably why I’m anxious, too. Lol
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My heart aches for you. You have done more than enough and those words from ‘professionals and friends’ are uncalled for. I wish I had a solution. Hugs to you.
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Reply to JeanLouise
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PT only hears what she tells them. Sorry that they did not get the entire story - from you. Be firm and reply that you ARE being supportive and that she is manipulating them.
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So her PT thinks you could be more supportive. Isn't that interesting? They seem to be operating FAR outside their area of expertise. Perhaps they imagine themself a psychotherapist. Or perhaps they are, like the rest of the world, just frustrated with her themself and taking it out on her poor unsuspecting daughter.

Let's look at this rationally. I'm in physical therapy myself. My PT has never once asked about my "family support" or implied in any way that it's part of the process. My husband basically ignores what I'm doing. My cat stares at me as if I've lost my mind. ALL of the "support" comes from the PT.

I think you have to consider the source of this advice, which is--unqualified to make this type of judgment. Your reaction is quite understandable considering the trauma you've been through with this parent. Advising you to "be more supportive" is completely inappropriate under the circumstances but unfortunately, you can't prevent people from expressing inappropriate thoughts, you can only change your reaction to them. Hang in there, and do find a therapist of your own. You are doing it right!
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Caregiving is the worst most stressful job there is. Even if you desperately love the person you are caring for it can take everything from you. Including your own life that you have spent years building, your job, your financial and emotional well being and your social support network. You have to set boundaries and know what you are willing and not willing to do. In essence, you have to save yourself, and chose your own life over the needs of the person you are carding for. This may sound harsh, but it is reality. You need to have a life to return to when the caring is over. The people who are telling you you are not being supportive do not know your history. And honestly, it’s not your job to defend yourself and rehash it for them. You tell them that you are being as supportive as you can be and doing all you can and leave it at that. You are paying for a service. It is their job to physically care for your mother now. Make it clear that she has nowhere else to go as she will not be returning to your house so they need to figure out a plan of care that works for her as well as the staff. If that means medicating her to keep her calm, then medicate her under doctors supervision.

I get all kinds of flack for living 3000 miles from my father with Alzheimer’s. I get lots of, “You are going to have to move home and care for him at some point.” My response is, “I don’t have to do anything that is going to ruin my own life. Nor would my father have wanted me too when he was in his right mind. When the time comes that he needs to be placed I will deal with it. In the meantime I manage his finances and what I can from where I am.”

Most likely in my father’s case there will be some event that triggers placement and I will have to fly back and deal with it then. In the meantime, I am not giving up my life to live with him and get sucked in to being a 24/7 caregiver to a father with dementia who can become aggressive and angry. He was always a difficult personality type and the frustration of the disease has made it worse. I love him dearly, he’s my dad, but I have one life to live and I have to choose me. Some people will have a problem with that. That can’t be my concern.

Save yourself.
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Reply to Caregiverstress
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InlandMeg Nov 20, 2022
Truth. Thanks for putting it so well.
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