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Kablooie Asked January 2022

Setting high boundaries, feeling relieved but guilty. Why do I feel this way?

I can't find suitable therapy or counselor options these days, so I'm hoping for moral support with this issue. It's nothing like the hell many of you are going through, but because I'm one of those highly sensitive people, it's gotten more stressful and has affected my health.


I've been long-distance caregiving my 93 year old father for several years now. (My mom died 10 years ago.) I don't use this phrase lightly because it's overused, but he truly is a classic narcissist. He’s got some great qualities, but his lack of empathy and inability to see people as something other than objects (plus his criticism, temper and rigidity) have caused a lot of damage in our family over the decades. He developed Parkinson's maybe 6 years ago but it went undiagnosed & unmedicated until 2.5 years ago. Although he's very sharp much of the time, he has progressed to moderate dementia. He has had auditory hallucinations, some visual, and a lot of paranoia. Also, it's been 6 years of him insisting that we be at his beck and call with whatever problem he has; leaving voicemails that say "Pick up, pick up! Pick up now!" about things that aren't important; and his clear dismay that none of his kids want to come live with him, or take him in. All that combined with the earlier damage he's done has been too much for all of us. We care about him but don't really like him. I'm the one who put up with him the most, so was most willing to deal with him.


Anyway, he's fallen several times and broken ribs and facial bones, but has always come home since they were manageable. He has helpers for yard work, home repair, house cleaning and groceries, but until recently had refused all attempts to get personal care help, even part time. He insists on leaning on neighbors and friends instead, which has burned them out and made them resentful. But of course he doesn't see that because they are objects and his needs come first. He is half blind and mostly deaf; refuses to wear a hearing device unless you threaten to not speak to him w/o them. Until a few years ago he didn't think of himself as old, and got annoyed when people tried to hold a door open or offer him a seat!


So far he’s been uninterested in moving closer to all of us (we’re on opposite coasts), but recently has agreed to start downsizing his house in hopes of eventually moving to be in assisted living near us. With the help of a neighbor, I lined up a retired nurse who is 'helping' him about 25 hours a week, ostensibly to pare down 50+ years of stuff (but really to keep an eye on him since his dementia is getting worse). He pays her - he still wants that control. In between downsizing, she makes him some meals or advises him how to eat better, and asks whether he's taken his meds. So far we haven't had to intervene on bill paying, having laid eyeballs on his paperwork, but I'm sure that's coming. It's been a month and is working out so far, though they do spar from time to time as he gets used to her.


So why do I feel guilty? Because now that he has somebody looking after him, I deactivated my voicemail and really don't want to talk to him more than every 7-10 days. (He doesn't text or email anymore, can't see well.) On top of the issues with him, I've had other long-term stressors which I won't detail here. And I work full time at a job that's been a killer during the pandemic. I have autoimmune thyroid disease which has worsened with the stress, and a lifelong anxiety/mood disorder (one of the reasons I don't have kids!) I need to lose 20-30 lbs, and take care of my mental and physical health, which have declined. But I live in fear of the phone ringing, either from him or the caregiver, who so far has needed more contact with me than I expected. Anyway, I'm just getting it all out of my head here, and I do appreciate you all listening. With the phone silent this week, I feel glimmers of being myself - interested in and having energy for something besides this all-consuming issue.

Kablooie Jan 2022
bundleofjoy, I appreciate most of what you are saying. Please be aware, though, of the post space limitations on a forum such as this. OF COURSE my dad's wealth is his, and it would be used to get him the best care. Please don't assume the worst. It's not helpful to say this is a "wrong attitude" when you can't know all the details.

Beatty Jan 2022
Stress response when the phone rings. I get it. 🤯😬😩

I think there should be a term to describe this specific part of the 'burden of care'.

I don't joke. Like a phone induced PTSD. Maybe PTSR: Phone Triggering Stress Response. I have it too.

(((Hugs)))
Kablooie Jan 2022
Sing it sister! Maybe one of us can invent something and get rich in our later years. I'm not finding the emoji control so here's an old fashioned one: :-)

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lealonnie1 Jan 2022
I have a bit of a different take on this situation. To better manage anxiety in general, you are the one who needs to take control of this situation with dad AND with his new 25-hour per week caregiver. You have to determine how much time YOU can devote to each of them to 1: Not feel guilty that you're ignoring your father and 2: that you have a handle on what's going on in his life so that you're not hit out of left field with a huge WHAMMY that knocks you off of your feet. Because THAT is the real fear here, imo. I have a 95 y/o mother who has more issues (on a CHRONIC basis) than Newsweek. When the phone rings I can feel my heart race & my stomach drop. WHAT NOW?? My mind races with 1000 thoughts even before I say Hello?

In order to avoid these anxiety producing scenarios, what can I do to help ME? I can call her CGs (she lives in Memory Care AL) to see how she's doing. Then, if the phone rings & it's her, I DO NOT have to answer b/c I already know she's doing fine. If you have a nice chat with dad's CG on a regular basis, you will know AHEAD of time how he's doing & if there are any major crises in the works. That gives you a head's up and therefore, NO NEED to talk to dad more than once a week (or whatever you have pre-determined to be your Talk Time that you feel comfy with). Knowing what is expected of you AHEAD of time wards off anxiety. I know it does for me.

Because dad will be moving close to you soon for AL, right? So you need to have some processes in place before that happens so you can effectively manage him once he arrives. This is vital. Just b/c he's in AL does not mean you no longer have contact & life goes back to normal; on the contrary; there are still tons of things to do FOR him and on his behalf. You need a PLAN!

Once you have a schedule in place for when you talk to whom, THEN you can relax a bit and get back to yourself and the silent phone and even feeling comfy turning the damn thing OFF sometimes. I do and that's when I sleep like a log. Without a solid plan, the elder care thing DOES become an all-consuming issue for us and takes up SO much head space there's no room left over for OUR thoughts! And that breeds anxiety which leads to disease and a sad life in general. You deserve a great and healthy life and dad deserves to have a healthy daughter to talk to him sometimes & help him get set up in AL some time soon. Without too much resentment which also breeds anger and malcontent.

If you play your cards right, you can have peace of mind AND a half-way decent relationship with a difficult dad at the same time. I am an only child with a 95 year old mother with advanced dementia who drives me NUTS; it's been her life's work for the past 64 years, in fact. She has strong narc qualities along with major OCD and anxiety that even Ativan won't calm down. Combine all that with advanced dementia & it's a miracle I'M not stark-raving mad myself! But I have found ways to deal with HER and with all the chaos she brings into my life and my head. You can too. Remember that you won't change HIM but you can change YOU and your response to his B.S. I think that's the main take-away of my message to you: find a work around that brings YOU peace.

GOOD LUCK!
Kablooie Jan 2022
lealonnie1, I read your profile and can see why you wonder why you're not stark raving mad! You are obviously strong because you also keep your sense of humor about it but wow, she is more than a handful. Thanks for your great advice.

Regarding the phone: I actually never have the ringer on for anyone, period. And I turn off all notification sounds. I look at the phone occasionally and that's it. Between calls, texts, emails, notifications from websites, etc., plus all the tech problems and maintenance with every device - there is just no room for anything else it seems!

Re: him moving here soon.... I doubt it will happen. He's chosen an AL that he visited when he was here recently, but his compulsive, stubborn and narcissistic nature dictates that he go through each box of old papers (there are dozens) plus all the tangible stuff, piece by piece, by himself. We've all tried to talk some sense into him with no luck. He snapped at one sibling and told her to leave the room when she attempted to throw out an old cell phone box with nothing in it. He insists on saving things like recommendation letters he kept from jobs he had decades ago, ones that he insists are historically significant. (They are not.) He thinks after he dies that we're going to archive all his papers at the Library of Congress or something. LOL. So none of us have been able to help him with sorting through his belongings because we can't take it. I think he will die among them, which would be symbolic of his life - he was a workaholic who always put his public service (state govt) work, admirable as it was, ahead of the kids and the family.
Kablooie Jan 2022
I think you're right on many points, AlvaDeer, and it's also grief about letting go of the way I've been all my life with family in general. They all tell me I am the "glue" since my mom died. I am the "good daughter" who didn't so much change her life for Dad, but because I am extremely empathetic, and also have an anxiety disorder (treated but it flares up when thyroid flares), I feel bad for the health problems he didn't ask for and so I over-respond. I think "how much skin off my teeth to be there for the old guy on the phone, just a couple times a week?" But of course there are texts and those half-demented voicemails, the latter increasing in frequency lately. I think it's also about control, which most anxiety is. I think, "If I keep up regular contact to get a bead on how things are going, it will be less frightening when I get a call from someone about some disaster." My other siblings have complicated lives, or keep a better distance than I do. In the back of my mind is also a fear of being disinherited if he gets disgusted with us for not being in his life enough, which would potentially only happen in his dementia, because he's not THAT unkind. And the DH and I are not well off, so were hoping for something when he passes. SO MANY THREADS to this tapestry! Thanks for your kind answer.
bundleofjoy Jan 2022
"In the back of my mind is also a fear of being disinherited"

"And the DH and I are not well off, so we're hoping for something when he passes."

-----
i don't think you should be thinking about inheritance, or calculating to be in contact with your father, enough, so that he doesn't disinherit you.

i think it's a very wrong attitude.
i know other people behaving like that too.

your father's wealth is his. and it should be used for him, to get the best possible care for him.

-----

"I live in fear of the phone ringing, either from him or the caregiver"

this i totally understand, and can feel empathy for you.
it looks like many of us are going through this: the stress of hearing bad news, emergencies, problems. every call/text becomes a stress trigger.

-----

it's about finding the right balance: helping our LOs and helping ourselves.

-----
"feeling guilty" you said.

it's not just the law that decides who's guilty (some people point out guilty, means you committed a crime).

no.

our own morality for sure, can warn us/make us realize that maybe what we did/thought is guilty/isn't right.

example:
you can say something unkind (X) to someone -- and still feel guilty about it years later. one day, you decide to apologize and feel better.
...saying X wasn't a crime. it doesn't matter. our minds/conscience aren't just governed by laws.
...it's not because it's legal to have said X, that we feel no guilt.
...also a person doesn't need to be sadistic (take pleasure) in having said X, to feel guilty later. it could have been unkind words (not done viciously), and it still makes you feel guilty.

2 things make us feel guilty:
...acts of commission (things we do/say/etc.) (action)
...and acts of omission (things we don't do/etc.) (inaction)

example:
you see someone mistreating another person and you did nothing (inaction), and feel guilty.

another example:
one's elderly parent needs help (not urgent, but some help), and one decides to take 2 weeks off, go on holiday and not think of any problems. but one feels guilty.

it's not easy.
one needs to find the right balance between helping others and helping oneself. i wish us courage in finding the right balance.
AlvaDeer Jan 2022
Glad you have set boundaries. You feel "guilt" because you were raised by a Narcissist. That's what they teach their children to feel.
You may want to change your G-word. Guilt assumes you are either a felon who gets delight out of your father's woes, or that you are GOD and you choose not to help him. That is worthy of guilt. You are a concerned human being who has done what you can in accord with your own human limitations. So that the word you want is GRIEF. Grief that this is what comes to people like your Dad, grief that you have a father who has been and remains a burden; grief for HIM and for YOU. Is this not worth grieving? To me it is.
You can sacrifice your own life. No one will thank you. People will not think you are a Saint other than the martyr part of that whole job description. So do get on with your life. There are many therapists to seek out, but I think honestly you are setting your own limits and I think you just need to be reassured that all of this is worthy of your sadness and grief. It is. And to hear that you are not a cruel demon-driven felon who gets joy from the woes of others. I assure you you are not that.
Best of luck to you. Please don't bring your father closer into your sphere. Best to you.

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