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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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You are depressed and you need help to revitalize your outlook in life. I would start with a referral from your PCP.
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I want to say...you are amazing and I understand your journey. I too am a caregiver for my mom 83 who lives w me for 2 years and has Dementia. I tell myself... God will decide the next step. I get tired as well, as w most family caregivers. I also took care of my husband as well at same time, who passed 6 months ago. Still working through 34 years of his stuff and never really had time to grieve. My life consisted of caring for them both. Now, it's just Mom. I just take one day at a time and say a prayer everyday. Its very challenging. At some point, decisions have to b made and they will. Staying n their home is what they always want, but is not always the best choice for their own safety. My mom lived 30 minutes from me therfore, could no longer live alone. With limited options for care, the choice was for her to come live w me. Assisted living facilities are very expensive especially if u want a good one. GOD will guide u and answer. He always does. My prayers are w you as well during your own challenge.
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I wish people would stop using the phrase " narcissistic" because in a sense aren't we all when we need help. (degree in Psychology) I've been on both sides of the "coin" so understand both sides. You need (MHO) to inform her as gently as you can that she needs (with your help?) to find professionals to do much of what you are doing and VET them and perhaps be there when they first come to make sure all is aok. (and I understand her fears, what may seem narcissistic but having worked in nursing homes while in Senior High I can only attest that there can be horror stories for those not in touch with family who makes sure all goes well. I vowed if I came to that point???)

I was at an end stage in my 40's (bld fire) and had a friend do alternative therapies for me (After two years I knew she'd had enough and by then I could "walk and talk" on my own). As well I took care of friends dying of A.I.D.S. I'd been on both sides myself.

Now I have the dreaded c - and am living along and trying to get assistance before I am no longer able. (dealing with Government agancies!!!)

We all will be there someday in spite of our best plans (obtaining my Masters then a bld fire which changed my life forever).

Our parents took care of us (as best they could) and we mho need to assist them. That does not mean doing it all as you have your own life and responsibilities and health matters.

MHO inform her there are many professionals who will assist her.

Best to you.
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Riverdale Mar 2021
I have to disagree with several points you make. Not all parents did the best they could or perhaps I should say they didn't search to try to do the best they could. I think many here feel that way. Personally I think my mother did but she was compromised in certain ways which I feel made me feel lacking especially when I was raising my children and realized how different aspects of care could be.

Secondly I don't think all parents are naturally narcissistic even when needing care. There are things my 90 year old mother residing now in a NH needs from me but she does not behave in a narcissistic manner. Yes a NH meets many needs but the person I am will see what is lacking or difficult for her and do my best to try to fix the problem. For example: She asked about earplugs because her neighbor who is completely mentally gone has the TV on loudly through the night. One day when I was visiting at lunchtime an aide was feeding this resident and the TV was on loudly. I got the sense the aide wanted to watch the program. I politely requested that it be lowered as I could not even converse effectively with my mother. When I heard about the issue of the overnight noise I complained to the staff saying that it was not at all right for a TV to be on loudly during the night. The next night it was not and my mother was grateful. My mother's attitude to this issue was to request earplugs. She would not complain about the noise. True narcissistic behavior would not have shown itself in that manner.


I am not disrespecting your education. I certainly feel for both you and the OP. There are ways that my mother's longevity has taken tolls on me. Although she resides in a facility she has had years of compromised health,fruitlessly relying on religion to cure ailments. I feel I have been on this journey of health issues for a long time. When it was first evident to me I was 10. I am sad that a serious septic infection has now left her immobile.

I hope you are able to find the assistance you need for your care.
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Thank you all for your advice, blessings and understanding! I am hanging in there. I have a daughter who is struggling with depression at the same time. But she is seeking help and has started on medication. Suddenly, that took over - like overnight! It certainly took the situation with my mother from first place to last place. We had a rough few days with my daughter. She started on medication yesterday. Crossing my fingers that this helps her along with therapy.

I don’t mention any of this to my mother. It would not be good. My mother would never understand and thinks everyone should just shrug it off. I know better. So, I call my mother in the mornings and I’m seeing her on Saturday’s when I do her meds. The nurses are monitoring her abilities to do for herself without visits from me. The cna is ready to go more to help her if she needs it. I’m okay with this. I’m less stressed with her situation.

I appreciate everyone’s input. Everyone here knows the situation better than anyone else. I’ve yet to get a haircut, but I’m working on it! That’s next. Baby steps when I haven’t paid attention to myself in ages! Love and light to everyone!! 🌟🌟💖💖
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Imho, it is IMPERATIVE that you take care of YOU, else you'll fall even more ill than you already are. You must seek help for your mother and yourself.
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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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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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I am so sorry that you and your husband have had to deal with this for so long. Your "vent" brought me to tears this morning. I can't imagine how you're still holding it together after all this time. I've only been dealing with my 94 year old Mom living with us for 1 year. I can't imagine 10 years of what you've been going through. My heart goes out to you. Would love to be able to give you a big hug.
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You have my deepest sympathy.
I wish I could give you a hug.
I will pray 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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As others point out, you are a beautiful person regardless of temporary externals. Vent away whenever you need to - the more probably the better for your health. You sound very very very strong (emotionally, mentally and physically) to be doing all you have with your own issues. Sounds like you have a loving spouse and family so your other side will surely return. Wishing you all the best.
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All I have to say, is God bless you. You have a lot on you. I get where you're coming from though. It's like you think to yourself is there ever going to be light at the end of the road anymore. I really don't know if I have good advice for you, but maybe just doing small things for yourself can help. I don't know what you like. I love music, so sometimes I put music on and clap my hands and sing. When it's gospel music, I just lift my voice in praise to God. It's ok to vent too. I wish you well and bless you!🙏🌞
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Start with yourself. If possible, a fresh haircut and some beauty items like moisturizers. Maybe some new personal items like undergarments and socks. Think about the regular medical appointments you might have forgone. Invest in yourself.
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TouchMatters Mar 2021
Good ideas . . . to add to my list !
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Blessings back...I know the feeling. WE are drained. Burned out. Whatever you want to call it. I see myself in the mirror and see the top of the scar from surgery 6 months ago for a dissected aorta no doubt contributed to by higher blood pressure I was unaware was taking a toll as I tried to do everything well...take care of the house I and my 2 elder parents live in, alone, cook, clean, laundry, bill paying, shopping etc. I look in the mirror and wonder where I went. Last night I bit the proverbial bullet and before going to bed sent a note to a psychologist I had seen years ago briefly. I am determined to get my BP stabilized. Just hoping this person takes my insurance. And so it goes.....
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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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My dear sister, I have been through the flames with you. There seems to be no end and your life is passing away. At the end, my mother was restless at night and would start out of the house if someone wasn't there to stop her. I was in my sixties and my husband had left me at the beginning of my journey with mom. I had to hire ladies to help. Mom insisted on staying at home. Like you, I had to do everything for her. My daughter helped with organizing her medications each week. I approached the hospitals to see if they could put me in touch with individual helpers. Mom would not deal with an agency.

Finally I got her on hospice because her cancer had metastasized. They were a small amount of help in that they brought pain patches, but at the end even they were not enough. Please find help for her and yourself. I had to arrange 24-hour care, 3 shifts, with me taking one of them. Lean hard into Jesus. Believe me, He knows everything that's going on. He knows you're bone-tired. He will send you comfort in little things and you will come out stronger on the other side. I found Bible reading helped, too. It soothed my soul to read in Psalm. God bless you, dear heart! Believe it or not, things will get better!
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Mymima
So good that you have made changes already since your original post. I see you are a woman who gets things done. You are an inspiration.
I wanted to add anything I could to help. In your post you mentioned that your image in the mirror gave you pause. It reminded me of an exercise Louise Hay recommended in her best selling book “You can heal your life”. This practice helped so many people that she later expanded the exercise in her book “Mirror Work; 21 Days to Heal Your Life”. Read some of the reviews of these books and Louise Hay and give it a try. Good luck on your refocus. It’s okay to let your mom decide for herself. She knows where help is available. You have done your part and done it well. It’s wonderful you have your husband. He will be happy to have you back. Hugs
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You have worked so hard already! If your mom is stubborn so be it- get all the outside help you can get and she will be fine. You are close by it is not like you are abandoning her. Please, please work in time for yourself and time for you and your husband. Even little things. It’s spring time, maybe find a way to be outside a little here and there, look at the trees and flowers and hear the birds. I believe you can find yourself. I know it’s hard. I have the worst bags under my eyes from crying every day for 6 months straight. I look and feel like zombie. But, last week when the weather started to warm I started walking and running again. Ignoring yourself is an easy trap but you can get out.
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This is my life word for word. I hate looking in the mirror I am 60 years old I became my mother's caregiver in november 2020. She has beginning dementia and other health issues. She is doing much better physically taking meds for her memory. I learned to pace myself which helps.
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Mammajae Mar 2021
Are there meds for memory? I didn't think there was!
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Dear nymima, you are suffering from burn out and probably depression. Please get an appointment to see a psychiatrist. You need to start taking care of yourself - and allow others to care for your mother. Yes, your mom will probably fuss, but it is not only her care that is a concern but yours as well. Follow your doctor's advice and work hard to regain that lovely person that is you.
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Mima please take care of yourself. A high percentage of caregivers die before the person they are looking after. This could be you by the sounds of things if you don't take a big step back.
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First of all you must take care 9f yourself or you soon will not be able to be a caretaker to your mother. Have a very serious talk with your mother explain you still have your own home and s husband to take care of his meals, laundry, etc. You can subject she comes to live with you to make it easier for both of you or go into a nursing home. She just might enjoy the company of like age.
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Mima, you took an important step by talking to hospice and setting some limits. Good for you!
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Mima,

Good for you for taking steps to take care of yourself!

You will thank yourself for it!
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Talk to the Hospice Social Worker.
If it is possible, since mom is "managing" in her home that you back off any help you have been giving her. You are "propping" her up. She is "managing" simply because you are helping her.
If the CNA is in 1 time a week are you doing what the CNA does the other days of the week? If so STOP.
If you are doing for her what a cleaning company would do? If so STOP.
Are you running for groceries when items can be delivered? If so STOP.
Tell mom you will give her X amount of time each day or give her X number of days per week that you will run errands or help her with things.
If you are bringing meals to her make and freeze some and she can heat up meals when she wants. Don't be bringing a hot meal to her daily or several times a day.,
Because of her Narcissistic personality traits she does not understand, realize, care that you are needing care yourself. all caregivers HAVE to care for themselves. Studies have shown that a good % of caregivers die before the person they are caring for do not let yourself become one of the statistics.
Hiring caregivers to do what you have been doing is an option. (and by hiring I mean that mom pays for them.)
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nymima Mar 2021
TY Grandma. I spoke to hospice on Thursday. They don’t feel my mother is ready for the Hospice Care Facility yet. I would have to agree at this point. They told me if I step away some more to let them know. I can tell them right now that if they are thinking of sending the cna in more, that my mother will not allow it. She has turned them down for more services before telling them that she wants her privacy. They are willing to send the help. She is unwilling to let them send more help. I am stepping back and not visiting her everyday anymore. I will stop in on Saturday and do her meds and water her plants. That is it. My mother has a cleaning lady already, so that’s a big help. She gets meals on wheels (that she is always complaining about), but I also give her leftovers too. So she just heats things up in the microwave. I’ve told her that I’m not up to anything more than that now. And I’m really NOT up to it. So Saturday’s it is. She gets visits from the nurses twice a week and the cna once a week. The Spiritual Advisor calls on Fridays, but she never talks about anything meaningful. She has her books on tape and her tv shows. She keeps herself pretty clean - even though it takes her a while in the mornings. But this keeps her busy. I call her and check in once a day. I feel relief already and I’m still trying to figure out the grocery routine, but I think I’m going to order for her once a month and have them deliver. I’ll keep you all up-dated. Thank you everyone for your input! Blessings to you all.
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Mima,

How are you doing?

Can you give us an update?
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You need help. Please research facilities in your area.
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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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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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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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