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As anyone who has read any of my posts know, I have a mom (now 100 years old) in my care who has borderline personality disorder and narcissistic personality disorder. She's been this way all of her life. Came to live with me (didn't ask me if it was okay) when I was in my early thirties and after 8 years of hell and isolation, I told her she had to get her own place (I'll write a book about the fallout from that some day!). It was a good thing for her, but she is too old for that now, but in good enough health not to go into a nursing facility -- and I wouldn't want that anyway. I don't hold anything against her at all because she suffered the vilest forms of child abuse which damaged her psychologically all of her life. Still, it is an extremely difficult place for me to be -- I am now 66, and being a full-time caregiver has really limited my opportunities and my social life is almost non-existent. That's okay, goes with the territory and I know it's not a life sentence any longer. I also love my mom despite it all and want what's best for her, even in her tormented, muddled mind. Did I mention that mild dementia is now also setting in? But that is not what bothers me the most. Friends and church members don't seem to understand the challenges. I even get an indignant cold shoulder when I try to explain why I can't drop everything and join them, why getting to church is a challenge, etc. It's evident that people are afraid to ask me things like "How are you?" cause if I try to explain, they just want out of the conversation. It's really a lonely place to be. Anyone relate?

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I basically agree with everything posted but I want to add that lonliness is very painful, especially when you are among “friends”. You can feel that nobody cares about you in the whole world and become depressed-which you might be already. A support group helps.
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I took care of my sister last year, she had ovarian cancer and passed 6 months ago. I can’t say I relate to your situation 99% , because having to take care of someone who is narcissistic and mild dementia must be tough, I can’t imagine the hardships you are going through, you are doing a lot of hard work but without appreciation or gratitude from anyone especially not from your mom, I understand and my heart goes out to you, there’s a traditional belief to our family that, she may not understand now of what you are doing for her because of her mental state, but once she is up in heaven, everything will become clear to her again and she will definitely thank you , I hope this helps. Take care.
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Of course..we’ve all felt same way. Those people you come across have never been caregivers..but all of us here are . Nobody understands anything except fellow caregivers. Every patient has different symptoms & ailments…but when they get up to that age, most have dementia, incontinence & immobile. Those are all what my 95 year old mother with dementia has. She can also be very abusive to me & the private pay caregiver. I don’t even bother talking about it to anyone else who don’t understand. It would only frustrate me more! Have you inquired in Church main office if there’s any members doing caregiving so you can take a break? Or maybe they have a contact through word of mouth? In addition, what about talking about it to the religious leader of Church, maybe the Pastor? Are there support groups that other members going through same? Hugs 🤗
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Sounds like your church-going friends are in church to be publicly recognized as 'good people' rather than celebrating and practicing its teachings. But I digress. Have you tried responding to the 'How are you' question with an 'I need help' answer? You might be surprised with a supportive answer. Could your pastor or members of the church leadership provide any support? They can't be of much help if they don't know you are seeking it, so ask. Frankly I wouldn't call these casual acquaintances friends. Friends know you. Friends step up.
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Don't try to explain. Those who don't/never did caregiving would never understand. Period.

A lot of people commonly say "How are you" as a greeting, but they really prefer to hear "I'm fine, how are you". It's just a customary greeting. They probably don't want to hear your trials and troubles.

Just come up with a short answer for those who ask you to attend or participate in an event - would love to, however I'm pretty much tied to the house these days.

Most people have no idea what it costs to get some respite care (when family doesn't help out). Some assume you can afford to pay a caregiver because they 'think' you have a little money tucked away or seem to be doing okay financially. The truth of the matter is, unless the cash drawer is really loaded, you have to be frugal with expenses because you don't know how long you need the $ to last. Those who don't do this caregiver thing, have no idea and really don't want to know the details.
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I can tell you how I handle the "how are you" question. I simply reply "Well, ongoing stressors with mom/aunt/grandma/etc. But that's a topic for another day or you can read about it when I write my memoir." (No plans to write a memoir - just being polite.)

This brings out the people who really do want to listen (and there are some like that) and it effectively excuses those who really would rather not hear it and were just asking "how are you" as a formality.

I have had people say "oh really, let's talk now." I've also had people giggle and say "yeah, I'll look forward to reading your book" as they disappear into the landscape.
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felixmental May 2022
That is a really good and creative answer, I may steal it...
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People may not care to hear about your particular challenges in care taking, but you sound like you have accepted the role of your mother's care being your priority. You are not obligated to go to church or join friends for social get togethers. You can say "No" for any reason. Perhaps some friends feel personally rejected, but if they are people you like, you might try to re-assure them that you value them as friends but that you are not available right now for casual socializing. If they cannot accept that, find more emotionally mature friends.
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Tekvah: Those not in caregiving roles will not be able to understand it as evidenced by their "how are you?"
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Tekvah,

You sound like a wonderful person and your mother is lucky that you care for her. No one can understand what it's like to be the caregiver and have the responsibility of a needy elderly person unless they've been there themselves. That's why there are groups like this.
As for the abuse your mother suffered in her childhood. This does not justify her behaving abusively to you or anyone else. It does not entitle her to control your life either, True, that abuse does affect a person psychologically, but when someone becomes an adult they can on their own get help for it. If your mother chose not to seek out help for her mental illness, that is no fault of yours. Nor should you be suffering the consequences of her lifetime of untreated mental illness.
You having no social life or life outside of caregiving for your mother is not what's best for her. How could making yourself a nanny-slave be what's best for anyone?
Get some respite care for her and go get some kind of life for yourself. You're 66 years old and that's not young. You deserve to have a life now. If mother doesn't like it, too damn bad. Please get some hired caregivers. Or put her in a care facility. Even if it's only for a couple of weeks of respite care. Check with Medicare and whatever is her secondary insurance. Often they pay for some respite stays in LTC or NH facilities.
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It is kind of like having a special needs child, a spouse that suffers from cancer, or caring for somebody with a disability after illness or injury. Unless you have experienced something similar, it may be hard for the "other person" to relate. Sympathy isn't really useful - or desired - but a little empathy and a lot of kindness go a long way. You might want to check into bringing a few other trusted caregivers onboard to help with your mom. You aren't a spring chicken anymore (I am part of that same group and feel a few aches and pains) and you might need somebody to help with mom if you suffer a major illness or injury. Having a "few extra people" in your lives might give you more opportunities to "say yes" to joining others in their activities.
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There are two videos you may want to see so that “YOU KNOW” what you’re going through and what 24/7 caregiving can do to you physically and emotionally. You’re the first person to convince not all the others that will not offer support but will judge. After you watch them, maybe if you could get them to watch them they may be convinced of what you’re going through or see things from your perspective.

1- The first one is: “Caregiver Burnout-It’s not just Patients who need help” It’s 5 minute 32 sec. long. It’s from a company called Alberta Medical Association. The man does an interview with an individual. What she has to say is very interesting. The following is the link to it.
https://youtu.be/jo5FWWN7TCk

2- The next is from NationalHospice, all one word. It’s entitled: “Understanding Caregiver Stress.” The following is the link to it. It will show the physical toll 24/7 can take on the body. It will also give practical suggestions on things others can do to be of support.
https://youtu.be/-8_eKGF883E

Feel free to tell me if this helps and what you think.
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‘How are you?’ Seems more like a joke to me. #1 Just LOOK at me, I look exhausted & more wrinkles than my mom! #2 You are absolutely right. No one really wants to hear, so I simply say ‘I’m fine!’😔
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I'm sorry you are feeling isolated. I'm sorry that you feel people are turning away from you. I personally think that it is a matter of perspective. I am NOT trying to minimize your pain. Your emotional pain and loneliness are real.

If you are an extrovert and verbal, people will "cut you off" on your thoughts. It isn't that they don't care, it could be for a number of other reasons, of which one of them is that you are flooding them with emotions and data and they are not comfortable during the interaction. In addition, if this has occurred multiple times, they are thinking that the interaction you will be having with them will be uncomfortable, therefore they will make minimal contact or avoid it altogether.

It sounds like you are not getting much social time other than taking care of your Mom. I understand the dilemma. I live the dilemma. I also felt the turning away and the isolation. However, luckily, a support group found me and they provided many suggestions and ideas on how to deal with my issues. They also helped me realize that I was not opening up myself enough to accept the type of help others were able to give.

A therapist and/or a support group might be of help to ease the loneliness and provide ideas on how to change the social dynamics that you live in. I don't know how "needy" your Mom is, however, you might be able to find a job or volunteer in a role that will provide at least a little bit of social life outside of your Mom.

We care about you and we value you and your opinions and experiences. However, we are not a complete substitute for face-to-face, personal communication, regardless of what social media wants you to believe.

Hang in there.
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Oh I can totally relate! Everyone in my mom’s church (her friends and even the pastors) pulled back when she first began the quirky behavior that you see in the early stages of dementia. By nature, she was one of those “last out the door” nonstop talkers you can’t get away from, so I personally think they were relieved when she quit attending.

As for family, I’m 63 yo and 17+ years in to being the sole caregiver for my mother. The only time anyone contacts me is when they can’t reach my mother by phone. Then they’ll call or text me to say “couldn’t get a hold of your mom, is she ok.” They rarely inquire how I’m doing, or if they do, it’s an obvious afterthought. I usually shrug it off, but when I allow negative emotions to take over, I feel hurt, angry, resentful, isolated, lonely, and worthless, usually in that order. Thankfully I have a wonderfully caring husband and this amazing aging care community to turn to for support, many with far worse circumstances than my own. I mean, seriously, you’re 66 and been long-term caring for a 100 yo mother with personality disorders and you still have love and compassion for her. Now that’s an example of an extraordinary human being in my book!
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Yes! People really don’t get it unless they’re in or have been in a similar situation. Not being snobby here - I didn’t completely ‘get it’ either until my family situation landed on me.

I don’t have friends who relate at all so this forum is invaluable!!! There are two former neighbors/friends who do , but they moved away. I visit whenever possible, sometimes we talk about parent stuff and sometimes not but I know I’m welcome to with them, and we always do something fun which is something I desperately need.

Thanks for asking this question, sending hugs!
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I have a therapist and check in with a couple of support groups. Both have been helpful for dealing with DH with dementia. It's true that most people who haven't walked in your shoes will not know how to handle the details. Thoughts and prayers are nice, but sometimes you need more. I also try not to be too negative with some people. Tell them the truth briefly, but then ask, "How are YOU doing?" and move on to something more pleasant. Best of luck to you. This is tough going.
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No, not really. I am spending my retirement years caring for a husband with dementia and many other physical illnesses. I would never have made it this far if it weren't for my network of friends. So many of them have listened and commiserated with me, and allowed me to vent -- and then we get on with having a good time. That good time often fades as soon as I walk back into my house, but at least I have had a few hours of respite. Perhaps your problem is that your friends are younger and have not encountered caregiving yet. Most of my friends are in their '60's and '70's, and all have had some experience with dealing with sick and dying parents, and some have also had to care for spouses as I am doing. They all are sympathetic, and understand the limitations caregiving has put on my time and go out of their way to accommodate my split-second schedule. I even had a friend who went through months of horrible eye pain that resulted in having to have her eye removed tell me that she would not trade places with me for the world. When you become a "short timer" you realize how important your time is, and to have great hunks of it eaten up with tedious chores you are not suited for for more than a decade, you need great friends to help you with your few moments of down time. I am sorry I have no advice for you, except to wait until your friends grow up.
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Your friends here and friends in the same situation will understand completely. Others, even family members do not understand the isolation and exhaustion.
Keep in touch with your fellow caregivers even if its just a phone call to share life experiences.

God bless you!
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HI, Tekvah:

You took some time out to reach our forum for ideas and support. I was a caregiver myself with my difficult divorced mom with bipolar mental illness and several health problems who died at 95 in 2014.
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Yes, I guess they just don’t know what to say and fall back on trite responses seemly meant to stop any type of uncomfortable (for them) conversation. When my journey had just started. I unknowingly started a conversation with a close friend about the frustration of dealing with my aging, difficult mom. Mid vent I could sense her pulling away, but I just couldn’t apply the brakes. Her sister swiftly entered (what had been a two way conversation) and skillfully silenced me with a series of pointed statements and questions: “But she’s your mother right?”, “you think you have it difficult, how do you think she feels?” etc. I felt like a pail of cold water had been dumped on me. I could tell then by the look on both their faces that they had discussed “my problem” and that they needed to let me know that they were not going to be part of it even in a remote sense.

The sister, all these twenty years later, is dealing with her husband’s Parkinson’s disease. She is at the stage of her journey where she is waiting for a memory care placement, while she searches for locksmiths to come to the house to install inside locks. She also is responsible for her 92 year old father and a 90+ relative.

It is not only “what goes around comes around”. It is more “the luck of the draw”. I remember my own ignorance as well as my frustration. I text her “how are you doing? and “do you need anything?” Sometimes no answer. sometimes a spew of info of escape attempts and incontinence issues.
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Yes, I have a dear friend who only wats "good news", even though I gladly let her vent about her own troubles. Due to her rough past life, I accept this and take from the friendship what I can, but it's very difficult, and I'm not even a caretaker. I can relate, though.God bless you and send you a friend who WILL listen, understand and maybe, just maybe, help.
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BurntCaregiver Apr 2022
A friend who will only listen to good news and be there when the good times are rolling is no dear friend. These kinds of "friends" are known as fair weather friends.
I've had a few one-sided friendships in my life. Where I was the first friend who came to mind if they needed or wanted something. Or if they just needed to vent to somebody. I wasn't however the first person they thought of when their own good times were rolling.
You drop these kinds of "friends" from your life. If you don't benefit from the friendship in any way, don't stay in it.
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Good Morning,

Like attracts like...stick with and discuss with other caregivers, people who have done it, been there, got the t-shirt. Keep your friends for socializing...ask the Church ladies for prayers and Communion, home visitation both you and your Mom.

Don't mix it...people ask a general social amenity, "how are you"? They simply mean a social pleasantry. If it's a a long term sickness, at first everyone races to your side.

I have different people in my life for different things--a healthcare team for Mom--soon to be a one morning a week "day" program with p/t, o/t, etc. so I
can get errands done with a clear mind. I have swim class 1-2 times per week and work evenings online. Everything is kept separate. You have to compartmentalize.

Other people who are in your shoes, get it. Can the Church people come to visit. I can't even get to a wedding this Summer because it would take (3) people to cover. I justify it by it's a "second" wedding on a Friday night--most people work during the day and would have to cut out early. It's an inconvenience.

When you are a caregiver, oftentimes when you make that decision--You have to sometimes say "no" to the things you would like to do and "yes" to the things you know you must do.

I'm looking out the window waiting for Amazon to deliver my pocketbook for the Summertime--a Lily Pulitzer lunch bag that will serve as my pocketbook this Summer which is bright and cheery, stayed within my financial budget and is waterproof. Basically it's a lunch bag I am using for a pocketbook. Sometimes this and a chocolate candy bar gets me through the day!

Hang in there sister...you are not alone! Amen...you are in my prayers.
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bundleofjoy Apr 2022
love your answer! :) :)
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Yes, yes, yes! I have friends who kind of just say "oh" if I try to vent and want to talk only of fun stuff like movies, beauty tips etc. But then they have not cared for anyone. So now I have this forum and my husband and some cousins who've cared for their parents.

Hugs and hang in there..we've to, right:-)
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I'd recommend joining Reddit and posting in the caregiversupport subreddit. There's so much support and understanding there. Unfortunately, I've noticed a trend on here where people will mostly suggest not being a caregiver at all. It hasn't been the most supportive place for me and isn't a good place to vent. That subreddit is extremely helpful though.
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bundleofjoy Apr 2022
i agree: i've seen both (sweet, compassionate answers) (and bully-like, mean, inappropriate answers -- i don't mean tough love, i'm referring to out-right mean answers).

i took a look right now at: caregiversupport subreddit.
had never heard of it before.

thanks! it's always good to have options :).

in any case, for me, in many ways, this website has been useful: i try to read only the positive, compassionate, useful comments. i've "met" wonderful people here.

you sort of have to choose wisely who you listen to: just like in life, when you bump into people.

i hope you can vent, emotionalwreck. it's important. and important to feel understood - such a good feeling. hug!!!! :)
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Join a support group. You wouldn't expect a man to commiserate with you on childbirth stories, so you can't expect people who don't have the shared experience of caregiving to understand or want to listen to your woes either.

There are loads of groups out there, so contact your local hospital for senior care support groups. I'll bet they have a few or can refer you to some.
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Tekvah
“ It's evident that people are afraid to ask me things like "How are you?" cause if I try to explain, they just want out of the conversation. It's really a lonely place to be.”

Do your best to find a therapist. You need some personal support. Even over the phone is helpful.

I worry that if you continue to try to do it all alone you will run the risk of total burnout. You need this support to manage you and your moms care.

Have you contacted your Area Agency on Aging for services available to you and mom? Checked out the senior center for kindred spirits?
Perhaps a caregiver support group of others who do understand what caregivers deal with would be a better place to look for social interaction during this time? It might help to take the edge off and allow you to be more relaxed in your day to day life. I hope my suggestions don’t feel like another job for you to do.

Wishing you a great evening. Hugs
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Tekvah, you are right, those who haven't taken care of a parent just do not understand.

I remember one day at work I was grumbling about how many times I need to run my parents to appointments, grocery shopping, clothes shopping, etc.

One co-worker said for me to remember that when I was a child that my parents drove me all over the place. To which I replied, "yes that is true, but my parents weren't in their 60's when I was a child, a huge difference."
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