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Good morning Caretakers! I am 10 yrs into being a caretaker for my 95 yr old mother. She moved here 9 yrs ago to live a few doors away when my dad went into a nursing home. She’s been dependent on me and my spouse because she is almost blind with macular degeneration for starters. Over the years, she gradually declined to the point of having invasive squamous cell carcinoma with multiple surgeries (mohs) that has metastasized elsewhere in her body, end stage chf, a pace maker battery that probably quit over a year ago, and the latest for the past year - Inflammatory Breast Cancer that is now fungating. She has been in hospice for almost 2 yrs. All this time, she has required so much attention to just keeping her life flowing, I don’t even know where to start. She is on the spectrum of narcissism, and she just expected us to do for her. She would never go into assisted living - or now a nursing home, and will fight when it comes time to go to the beautiful hospice facility we have in the area. She is still managing in her own home, and tells hospice that she only wants the help from the cna once a week. She says she wants her privacy. She is of sound mind, it’s just the rest of her that is decaying before our very eyes.


In the meantime, my health is bad. I have stage 3b Non Hodgkin’s Lymphoma that I have been treating for for 4 yrs. I don’t care about my appearance anymore. I look disheveled. I hear from family members who want to come visit us, but I don’t even want to see anyone. They would be shocked at the sight of me and I would be so embarrassed. You may wonder how my mother is still managing in her own home. I wonder the same thing. She just does. If she couldn’t manage anymore, I would say it’s time to go to Hospice Care, but she still holds it together. I am drained and I’m not sure I will ever recover from this long journey. She would never have done this for me. In fact each of us kids had to leave the home when we turned 18 - whether we were ready or not. I have spent all my 60’s caring for my family members (my dad and my 2 sisters), that have passed including my mother and my mother is the last from my immediate family. I will be 70 yrs old soon. I was triggered to write this morning because I needed to vent. I caught a glimpse of myself in the mirror and I am a shadow of my former self. I wonder if I will ever have my life back to be free to do as I please. My poor husband has been on this never-ending journey with me. I wouldn’t even know where we could begin again. Blessings to all caregivers today.

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Nymima, you have often written us of your Mom and her CHF and her awful cancer, with all the drainage. And told us that she still gets about her house on her own. I think however that this is the first you have written to us about you, yourself. I am truly worried about you.
You have told us Mom wishes to remain in her own home, and you say you don't know how she is doing this on her own. The truth is that she is not, and that YOU ARE DOING IT, and it may just be killing you, almost literally.
I know this is just a vent, but the mirror has given you a strong message, and your feelings and fears about your health are appropriate. You cannot go on. You need now to sit with Mom and hospice together and you need to discuss her move to care. Otherwise, without this insistence, you will be choosing to sacrifice yourself, perhaps you LIFE to this last time your Mom has on earth. If your Mom cannot do this for you, and that is how I would put it, knowing your very life is in jeopardy, then I would inform hospice you simply cannot participate in any meaningful way any more.
You really need to consider counseling for yourself. It is time to choose life for yourself. I am so sorry for all you are going through. Your messages to us seem increasingly more and more desperate, and this one is desperate indeed. I only wish the best for you, but this is out of control and has been for a long time. You have been doing this for two years. You may not have another two years left to you to do this. I am so very very sorry for all of this.
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nymima Mar 2021
I hear you. I’m going to have a sit-down with hospice. I agree. This has gone in long enough. TY for being there.
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Your mother is managing in her own home..............at YOUR expense! It's time for her to go into a hospice home now, even if she's having a fit about it, because YOUR life is on the line now. Her life is reaching its end point here very shortly, but you have lots of life left to go. But only IF you agree to start valuing IT as much as you've valued HER life up until now.

YOU MATTER Mima. More than you realize. You've spent the past decade devoted to caring for others, at your own expense. Now it's time to put all that aside and devote your life to YOU. It's not selfish, it's 100% necessary! You've put everyone else at the top of the list of priorities, which has put you at the very bottom. Now the mirror tells you you're a mere shadow of who you once were, and is begging you to get back to your old self again!

Place mom in the hospice home right away. Then make arrangements for you & DH to take a nice relaxing weekend away to the Poconos *or somewhere like that if you're in NY* where the 2 of you can just veg out and reconnect. Sleep late and worry about NOTHING for a few days. That is where you start. That is where you begin again...........to take YOUR life back and start over.

You deserve to. Please do it.
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bundleofjoy Mar 2021
i really like your words, lea!!
wishing good health to you and your husband!!

courage, nymima!!
i hope very soon you find ways to get your real self back!!!

bundle of joy
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It’s definitely time to reclaim your life, we only get the one and spending it worn out and unhappy is such a waste. Please back off from your mom. She manages, so leave her to it. It doesn’t mean you don’t care. It means it’s time for self care. Her situation will decline and if you’re exhausted you’ll be less prepared. I hope you’ll book a hair salon appointment, buy somethings new to wear, and know it’s never a bad idea to talk with a therapist. Plan something nice to do with your husband, you both deserve it
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You are a special person for being willing to provide care to so many. Now it is time to care for your self and your marriage. Your mom is of sound mind, so you can't make her do anything until she is unable to express her wishes. You can choose to have APS check on her and even secure guardianship if your mother has not assigned you as her PoA or created a Living Will. Your own family comes first. Your husband is a saint for enduring something he certainly didn't sign up for. I think he needs to be rewarded by having his wife back 100% 24/7/365 from this day forward.
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Your mother isn't managing in her own home. You're doing all the work so she can 'manage'. She likely doesn't get that and thinks she's doing just fine in her home.

This is more than you (or anyone!) can do alone. You're sacrificing yourself to a woman who shoved you out the door the second it was legal to do so. She doesn't sound like she was a loving mom, but she expects you, her daughter, to literally lay down your life for her. You've sacrificed yourself for dad and sisters. Now it's you who needs help, and does Mom care if you get it? Nope. Does she care if looking after her literally kills you? Nope.

I may be wrong, but it sounds like you've accepted this role of taking care of everyone. You've been the scapegoat. It's one thing to offer your help, but it's another to be the automatic go-to. It has to stop. Take your life back!

Others on here are more knowledgeable about how to get Mom some outside help or assisted living.
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Mima,

Is that your “grandmother name”? My grandson calls me DeeDee. I don’t know whom are the people in your life that give you the most joy as he does in mine. I suspect that you want to be there for them, as I do for him.

Can you take one step tomorrow to care for yourself? Then, come here and let us know? Then, another the next day? Then, again let us know, etc? Then, take two steps when you are ready? Then, let us know?

Then, when you can think clearly and feel healthier, let us know that, too.

We are cheering for you!
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It sounds like DEPRESSION, overwhelm, stress, anxiety . . . and more.
You need to take baby steps to make changes ASAP for your own well-being.
Before you read this list, get yourself a notebook, a binder, a journal and map out what you want to do, what you will do. Below are my ideas - do what works for you.

* IMMEDIATELY. Get help to care for your mom, even if a high school, college student, a neighbor. You must do this for your own quality of life.

* KNOW, it will be a slow climb out of the state you are in as your 'life-style' is a habit and habits are not easy to change.

- You need to make small, perhaps very small changes "one foot in front of the other" to break this cycle / pattern you are in.

* TAKE FIVE minutes. . . learn how to S-T-O-P (shift) and do something positive for yourself, i.e. sit and meditate. If you do not know how, VISUALIZE / focus on something you (used to?) love, gardening, looking at a flower, going to a movie, museum, taking a warm bath. You could also RELAX in a warm bubble bath.

* FIGURE OUT small positives to do for yourself:
- read a magazine - read a chapter in a book - watch a movie - get a foot massage - start painting (get a cheap watercolor set)

* GET A THERAPIST if you need.

* JOIN a support group.

* START TELLING YOURSELF "I deserve a respite, I deserve and NEED to renew myself, I want to be as healthy in all ways as I can be. It starts with self-love.
oxoxoxo, gg
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I'm so sorry 💔. It's up to you to make the hard decision. I've been doing this for 5 years. My son,my brother,my mother. My father is in the nursing home and may or may not come home to me. I've lost my health, my career, my savings. You must place her in a nursing home soon. It's so hard to be the strong one, the practical one, the reliable one.
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It’s been a little over 2 years since I’ve been caring for my mom, alone, in the end stages of dementia. And it feels like 20 years have passed. I had to take a photo to attach to my bio and when I saw the pix, I almost didn’t recognize myself! I was OLD and run-down. I’m 52 years old, but being a caregiver has made me feel and look 72. Prior to being a caregiver, I always looked much younger than my actual age, thanks to exercising and maintaining a healthy life. And now, it’s all gone. Add COVID isolation, working from home, and very little rest or sleep, I’ve reached an all-time low. This is a season that I pray will end soon. Eventually I’ll recover and go on in life. My heart goes out to all the caregivers who are suffering to care for a loved one.
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Maryjann Apr 2021
As everyone is saying to the OP, try to extricate yourself enough to take care of YOU! 52 is FAR from old and you should not feel like you are 72. You need help and I hope you can give yourself enough grace to seek it. Your mother (probably) would not want to do this to you!
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Thank you for sharing your story. Probably all of us can relate to it. My mom died 13 months ago at age 93, probably from dementia. As the only child and single, I was the one who oversaw (and did some of) her care for I would say about 10 years (8 of which were fairly hands on). My mom historically was narcissistic but became less so as her situation worsened.

I can't offer specific advice, but know that at age 95 your mom's life is in all likelihood winding down. I would just encourage you to do whatever you can to start extricating yourself - even if just a little bit - from this situation. It was a turning point when I realized that no matter how good, caring, and competent I was, the day would come when I would have to surrender some of my responsibilities to others. Especially with your health condition, it is key that you acknowledge this. Whatever form this takes is up to you, but you must do it, even knowing that your mom probably won't be happy and yes, maybe the care won't be quite as good. I actually had visions of dying before my mom as she was quite hardy (!), but God had His own plan (note to self: never second guess God! :) ). For me, the first year was mostly dealing with paperwork, sorting, cleaning, etc. As I start the second year, I am just now starting to think of me, what I need to do to improve my health, and what I actually want to do with the rest of MY life! Hoping this maybe helps just a little. Please continue to post. Lots of people are rooting for you.
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