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?
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."
“ 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
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.
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!!!! :)
Hugs and hang in there..we've to, right:-)
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.
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.
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.
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.
Keep in touch with your fellow caregivers even if its just a phone call to share life experiences.
God bless you!
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!
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!
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.
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.
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.
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.
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.