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.
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.
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.
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!! 🌟🌟💖💖
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.
I wish I could give you a hug.
I will pray for you.
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
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!
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
Good for you for taking steps to take care of yourself!
You will thank yourself for it!
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.)
How are you doing?
Can you give us an update?
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.
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
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!
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.