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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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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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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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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'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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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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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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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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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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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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