Mom asked me to move in to help her four years ago. I am the only single kid, and I moved from another state so I have no social contacts here. Mom has mild/moderate symptoms of cognitive decline, worsening; painful arthritis, very poor mobility, worsening; severe hearing loss with a refusal to investigate hearing aids; incontinence, and a very controlling, manipulative, spoiled character that has been well-covered until recently. Her filters are failing, and it is not pretty, compared to her once lovely self. Facade or no facade, my mother has been a well-liked, lovely person most of her life, so I have been shocked by some of her self-serving behaviors and essentially feel I am grieving the loss of my mother as well as feeling my loss of freedom.
She is 89 and I am 68. I am a kind and resourceful person, a dutiful daughter, and worked as a health care professional for many years (in physical medicine and rehab), so I know quite a bit of useful info to help, but, she is often stubborn or just plain petulant, like a spoiled, irrational child. It breaks my heart to see her in pain, and then when she won’t listen to good sense, it is beyond frustrating. Given my rehab background, I know it’s best that she do as much for herself as she can, for many good reasons. We established that threshold when I moved in. But after year one, it is clear that she’d rather be served. Not only that, she’d rather that I read her mind and then serve her. All with my old sweet smile, of course. I seem to have misplaced that old sweet smile, lately.
Along with my optimism, sense of humor, and conviction that we can weather anything. We’re not weathering. Or, most likely, mom IS weathering, but I am not.
I am burned out. After four years of 24/7, mostly no time off and little help from 2 siblings who are “busy” and live 5 hrs. away, and in Colorado, I just have to find some solutions.
I have much better circumstances than so many, and for that I’m grateful. But here I am today with a terrible feeling of wanting to either scream or just die. I’m not suicidal, but I am depressed, don’t feel good, and I feel I can’t talk to mom about it. Been there—she doesn’t believe in depression, for one thing (I have a long history of depression and anxiety). She believes it is weakness or self pity. I have the habit of just bucking up, stuffing it, and doing it anyway, with a smile. Trouble is, today I can’t summon a smile. I know when I can’t fake it, I’m in trouble.
I have made attempts to talk with my sister, but she doesn’t want to go there with me re mom’s behaviors. Sis has made it clear she wants me to stay for the duration. And she’s a doctor. Busy, busy. Brother has his own problems.
What I’d really like is to move out and caregive on my terms with the help of other caregivers. Mom has long term care insurance as well as funds. I love my mother very much. She can’t help that her capacities are failing, but she CAN help behaving like a spoiled, entitled adolescent (she has acted like that for years after remarrying and being too self-indulgent).
I can’t take the passive aggressive, manipulative, controlling behaviors on a full-time basis anymore. I’m old! I have nothing to look forward to. Mom has never once asked me about my future after she dies. This is mom’s home, not mine. I’ll have to leave after I manage to empty the house of an obscene amount of belongings which she refuses to go through now. It will take some doing. Another 6 months of my life? I don’t have many left!
A question. Would YOU, a fairly well-adjusted mother treat your daughter this way? No inquiries about me nor any indication she even thinks about my welfare. No encouragement for me to get out and about. Yes, I live in the F.O.G., but am trying to see out to clearer weather! I have ranted some. But please offer comments and suggestions. I have learned so much from you all on this forum which I have read daily for 2 yrs. Thank you so very much.
Yes, at 68 your life is passing you by. Don’t settle for that.
Should a mother treat her daughter this way? That’s a good question. Here is a better question, ‘When are you going to end this fiasco?’ USE THE LTC INSURANCE! What good is paying for insurance if it isn’t being utilized? Her payments aren’t a donation. People purchase LTC insurance because they may need it someday. That ‘someday’ came a long time ago!
Don’t ask but tell mom that all of her payments are going to be put to good use.
Do not equate caregiving with your love for her.
You are running on fumes. How far do you think you can make it on fumes?
I cared for my mom as a caregiver for 20 years, 15 years in my home. It nearly killed me and trust me, I was as miserable as you are. She recently died in a hospice house with end stage Parkinson’s disease. She received excellent care. I certainly miss her but I am glad that she is no longer suffering and is reunited with my father and brother in the afterlife.
My mom didn’t have LTC insurance. I certainly wish that she had because my life could have been very different. I didn’t have help from my siblings until a major blow up with my brother. He stepped in for 14 months before mom entered her hospice house. Then he saw first hand what I went through. Your siblings are clueless! Stop expecting them to understand. Take control of this situation for yourself and your mom. Mom needs more care than it is possible for you to give her.
Wishing you peace as you navigate your way through this difficult time in your life.
I want to read a different posting from you soon, something like this, ‘Hi, everyone! Today I made plans for my mom to be placed in a wonderful facility! I am moving forward in my life. I am meeting my friends, going out to dinner, taking a trip, etc,”
Keep us posted, we care!
I honestly haven’t considered placement for my mom because she isn’t ready for that yet. In other words, she doesn’t want to leave her home and the comfort of her beautiful things, yet, and I believed I’ll know when it’s time for her to go. I used to be afraid it might be down the road a few years, but now I’m afraid not. I don’t know how to do this. I’m stumbling along trying to do it “right” or “well”, but I can’t do it alone any longer. I love my mother very, very much. I want her to feel safe, comfortable, and secure. And she does. She’s extremely fortunate in many ways.
Yup. Sibs are clueless. My sis has POA (mom set that up years ago ). It may be a little inconvenient but hopefully not a problem. I believe you’re absolutely right that I must stop expecting sibs to understand. I will take control and step by step will get a good solid plan. That will really help with the anxiety. I feel like the old boat is getting some wind in her sails! Jibe ho!
Thank you so much for your comments and for caring.
So no, I would not let my mother treat me this way. In fact, I left my 94 y/o mother's presence today in Memory Care after she chose to treat me with a huge level of contempt after I've been dealing with her non stop for the past TEN years as an only child! Your mother 'not believing' in depression and anxiety is another form of contempt for you, in my opinion, and a way to minimize and trivialize a very real condition you suffer from! Yet I'm quite sure ALL of HER problems are 'valid', even a wart on her finger (just like my mother's wart which has been an ongoing issue now for 4 years). My DHs brother just died at 70 and my mother had nothing to say about it at ALL when he mentioned it to her today! Not one word. No "I'm sorry", nada. It's all about her 24/7 and her complaints and how horrible the food at her MC is (she weighs 200 lbs, btw). So all she cares about is herself. She pays others $7000 a month to take care of her, too, b/c nobody else will. That's just how it goes. She told my step daughter on the phone today that she gets visitors 'once a year if she's lucky' when in reality, we visit her WEEKLY! So there you have it, my comments. I feel your pain.
Get out. Hire the company to clean out the mess, and then get her placed, and yourself a new life.
Wishing you good luck and Godspeed my friend. You deserve everything good in life!
How did you come to stand up to her? I’m glad you are able to turn and walk out when she’s mean.Are you saying she never learns from it? Probably can’t?
Thanks for estate sale tips, I wrote a note and put it in my “Great Escape” folder :) I have a ways to go here before that, tho. My mom is very sharp in many ways. I don’t think it’s time for a facility yet, but you just never know what tomorrow will bring. One dilemma here is that we live in a smaller town so we don’t have lots of resources. Right now, there are NO available apartments and I’ve been watching for a while. I have a feeling I might be looking for quite a while. I appreciate your note, I feel better and not so alone.
Find a live-in caregiver for her or move her into an AL facility.
In the meantime, do not tolerate her abusive behavior. Of course you feel terrible to see her in pain and suffering, but if she can do for herself in any way she must be forced to do for herself.
You have a back round in rehab care, so you know what I'm talking about.
Waiting on her hand and foot will only make her behavior worse.
She has LTC insurance? What are you waiting for then?
I've said it many times on this forum that for caregiving to be successful it must be done on the caregiver's terms. Not the care recipient.
Look for a new apartment for yourself. Then you tell your mother what your new role will be in her care. Not the role she demands of you.
Yes, as I wrote, mom and I agreed she must do as much for herself as she can. I don’t wait on her hand and foot, but she wants me to. More than anything, it’s those kinds of tension between us that are wearing me out. I don’t want everything to be a contest. She needs to be “right” but often ISN’T. She does not respect boundaries or my need to have quiet time. She’s an extrovert and I’m an introvert. I enjoy a “life of the mind” and privacy. She wants me to entertain her constantly.
Everything is a contest and that is not ok with me. I feel used up. And I don’t think she has a clue about that. Maybe she does, but if so, it would be so much worse to know that she intentionally disregarded my welfare. Right now, I’m giving her the benefit of the doubt. As I wrote, she used to be a good mom and a funny, lovely person. I would like to remember her that way. I hope it’s not too late to recover some warm and fuzzy feelings about my mom.
Thanks, Burnt.
It DOES feel like failure to quit in-home caregiving. Although I won’t be quitting. This caregiving will simply take a new form, most likely.
Thanks so much for caring.
You must do one or the other, as you have more than paid your dues, and now it's time for mom to get a rude awakening, and come to the realization that her loving daughter who she has used and abused all these years, will no longer be at her beck and call. It's time to put that long term care insurance to good use, along with her other funds. She's now going to either have to hire live in help for herself, or find a nice facility that she will live out her days.
And don't you dare let her or your siblings make you feel guilty about any of it. You have given up enough of your life and it has taken it's toll in a negative way, so time for you to make the changes that probably should have been done long ago. You are worth taking care of, not just mom. You've put yourself last for long enough. Don't waste another day in making the necessary changes, as none of us are getting any younger. Get out there and start finding your joy again. God bless you.
Seriously, I need to hear that I’m not being selfish or a big baby or something. It’s all gotten so convoluted between us, ever since I started drawing some boundary lines (which she ignored), but at least I began. That was 20 yrs. ago when I only visited every 3 months or so. Now that we’re together every day, it’s harder. She sees changes, but it’s because I’m in the wrong, not her—no, never her. The guilt and shame are so hard to dump. They are default settings, it seems! I’ll keep plugging along. Thanks so much for caring.
I am certainly finding some of that from you and others in this post. I must prioritize self care, because I have not. One very, very important comment you offered was to TELL my sibs what my plans are (when I have worked them out). Up to now, I have been a collaborator, as in “let’s all discuss and make the best decisions for mom”. Guess who always got the worst end of THAT kind of thinking? I just never thought my siblings would actually be so uncaring about me and my needs. Not a peep. I was going to say that I wouldn’t do that to them, but come to think of it, I was always the only one to look out for everyone else! Duh. They’re good folks, but rather self-absorbed. Time for a meeting of the minds!
Thank you so much for your helpful comments.
Only, c'mon! You know your mother isn't and can't be expected to be "well-adjusted" at this stage. Her perspective is heavily skewed by her pain, disabilities and need for comfort, and there you are providing the gold standard of care with no effort required from her. That doesn't mean that you can't ensure just as good a standard of care without being her 24/7 slave, but it does mean she is not going to take any of the initiative on this.
I think you have been waiting for permission to make changes from your mother, your sister, your brother; but none of these people has any incentive to change a status quo which causes them no inconvenience or difficulty or expense whatsover. So will you take permission from us? - because you have it, with every blessing! Hugs to you.
You have our permission and encouragement to use your training and skills to get Mom more care, and manage it according to her needs, and a respite for you. Oh, and hire a housekeeper too.
Here is a suggestion for you. Make a copy of your mom’s LTC insurance stipulations regarding respite care. Put the copy on your refrigerator! Enlarge the print if possible!!!
Look at it daily until you take action. Stop putting this off. You know that you deserve a break from caregiving to start working on your exit plan and finding an appropriate facility for your mom to reside in.
Now, while on break, start researching facilities in your area. You can schedule tours either virtually or in person, collect data and talk to your siblings about your findings. They should be more appreciative of you. Sadly, they are taking you for granted. Do not allow them to treat you this way. If they want respect from you, show them that they need to give you respect. Respect is earned.
Tell your siblings, ‘You have not walked in my shoes. You have no clue what this is like. Unless you wish to step into my shoes, don’t speak to me and listen to what I have to say! I am done listening to you and mom. I will not be mom’s caregiver any longer. I have done all of the leg work finding mom an appropriate place. I can make the final selection or you can participate. Which one will it be? My caregiving duty will end on such and such a date, so I need an answer as soon as possible. Thank you!’
Does this sound like a feasible plan to you?
Also maybe they have a handy list of facilities.. Actually, we don’t have all that many so it won’t be a huge research project or anything. But, making that first call will NOT be easy. It’s hard to know what I need to ask. I heard that residents must be fairly mobile to qualify for AL, and mom is barely able to make it to the bathroom with her walker. I recently asked her doc for some home therapy, so that is helping her strengthen her legs.
Yes, the sibs definitely are taking me for granted. I do believe they appreciate what I’m doing for mom, they just don’t offer much in the way of help. I thought sis would offer to relieve me now and then. I know she’s very busy, but…
Well, you and Bubba got me jumping onto respite care, and you and a number of others got me making a list of facilities. That’s a good start. Lots to learn. Thanks so much for the “nudge” and the suggestions.
if you dont have the POA how are you handling her dr appts and speaking with the AL places, etc. as many years as you have been the caregiver you should have been assigned by your mom as POA. Is the sister that has it now going to help you when needed to get mom placed. And never sign as a responsible party, if your mom is cognizant she should sign all the necessary paperwork. Our situations are alot alike in some ways. Blessings to you dear one….Liz
To address your points: I have a release of information document on file with the doctors’ offices, and I attend all visits. Same with the LTC ins. Co. ( a couple of years ago, I requested a release of info form, they sent it, mom signed it, granting the release of information from them to me, and now I can talk with them about her policy).
i haven’t spoken with any facilities yet, but I will inquire about a release of info. If it becomes necessary, mom could name me as a second medical POA, I believe. Because mom is competent, POA isn’t an issue at present, but even so, my sis is a good communicator and tho she’s 5 hours away, I don’t anticipate problems. (should I?).
We can’t see the future, but mom very likely will need placement because of mobility issues before cognitive.
Yes, sis would help however she could at that time. Thanks for the reminder about not signing! I appreciate your help.
hugs to you and your mom!
It does cover in home services and we may begin there.
I think it would help mom’s transition, to help her adapt to the idea of it all by starting with a few hours of in-home care. We can see how that goes.
You wrote a great overview. Thanks so much.