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My mom is visually impaired, with a bunch of other health conditions.


I can't work a fulltime/day job bc she has drs appointments every week. Sometimes upward of 8 apps and some 1hr drive one way.


I'm not sure what to do, she refuses to have anyone but me as her caregiver.


I have been taking care of her from 17 to now 37 (20 years).


I mainly drive her to drs appointments, grocery, bank, deal with all finances. I have no life and she thinks I "get paid to do nothing" but won't get another caregiver to help.

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My 95 yo mother got to the point where she was going to 1-2 medical appointments every week. I couldn't drive her every time, so she ended up using a car service or conning a neighbor into taking her. Every time she went, she went because of some 'symptom'. When I finally stepped in to manage her care, turns out she was going to all those appointments because she wanted to talk to someone and have someone pay attention to her.

You have been 'programmed' to respond to your mother's requests, as was I. It got to the point when the phone rang, I dreaded answering it because 99.9% of the time, it was some sort of 'problem' she was calling about that wasn't really a 'problem'. She didn't respect my boundaries, she didn't respect my need to have time with my own family,

I hired a part time home health aide, but of course, no one could meet her standards and expectations - even me but, according to her, I was much better at things than 'those other people'. After many years of making sacrifices for her, my own health started deteriorating, and I ended up having a major surgery every year for 4 years in a row. A lot of it was because I had postponed things for so long in lieu of taking care of mother and her needs. Which took recovery times and time away from mother. During that time, she learned that she truly did need someone to help her and that I wasn't able to, that she would have to accept the home health aide (who could also drive her to her medical appointments, but of course, for a fee plus mileage, which $$ mother would have to pay for herself. She wasn't happy about having to pay and she herself started cutting back on med visits.)

So, I would suggest maybe ease into things - start by telling her that you have some medical issues you need to take care of next week (you really do - your own mental and physical well being - but don't tell her that) and that you are unable to take her to any doc appointments. Your mother doesn't 'need' to go to the bank or grocery store every week or even every other week - that is something you can take care of for her...You do the banking when you have some time; you bring her her groceries the next time you show up. You will still have to handle the finances, but that is something you can do from your own home. Maybe arrange it so you take her to certain places, 1 day a week every other week. Review her medical appointments and talk to her doctor to see if she truly needs that many appointments. Maybe some can be combined together.

I know it is difficult to step away, especially after so many years of helping. But your mother has to start understanding that at the rate things are going, something can happen to you, and then what will your mother do...she will be totally and completely unprepared to handle anything. You have to set her up so she can function without you --- but probably with the help of someone else. You gotta take care of yourself- without feeling guilty about it. It is a necessity and requirement for your well being.
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My opinion is that someone should never, ever stay with someone who hits them. You are young still, but not for much longer. As the 40's are approaching rapidly. Now is the time to seek your freedom. Do you have any money at all? You need to get some kind of a job & find a room to rent with a roommate somewhere you will be safe.

Your Mom can call the Area Agency on Aging and seek assistance for herself. If she doesn't like the Caregiver, too bad for her. She will adjust. And if she honestly & truly *needs* all those Doctor's appointments ... then it sounds like a Nursing Home may be an acceptable placement. The Area Agency of Aging has Social Workers that can assist her with this.

Are you going to let her stunt your life and hit you for the next 30 or 40 years? You are entitled to live your own life. Without being in fear of being hit. Jobs are plentiful now. And most pay well. Even our local Gas Station Convenience Store pays $13.00 an hour to start. And I'm in a state with 8 bucks an hour minimum wage.You should be able to get a job very easily. You can always upgrade your job in a year or two.

As an only child also, I caregive for my Mom who's blind & disabled.
But, she's almost 90. And I worked for many years before.

Did you know there are organizations that train blind people to live by themselves? (At no charge, too.) The state pays for them.
My Mom went to a school for the blind several years ago. She cooked, cleaned, did laundry etc. They taught her how! They even provided some equipment for her. The school had a kitchen in it. They cooked, did crafts. The school had a bus that picked her up for free and took her home for free, too. She loved it.

Of course she had to stop driving when she first lost her sight. And yes, she had arthritis too. Very badly. And high blood pressure. All of these issues are very common as people age. She managed on her own using a Walker and assistance devices for quite a long time.

She did great until a massive stroke & now she's bedridden & paralyzed and I take care of her at my/our home.

But, as a blind person - she did very well on her own until she couldn't walk. And others at her school even had jobs! They lived productive, happy lives.

Please rethink all the excuses. This is your chance to thrive and prospher and build an exciting future for yourself. You are still young enough to do so. Don't be afraid. You can do this. Do not stay with someone who hits you.
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As mom’s daughter and caregiver you need to also be her Medical Manager and set priorities for her well being and yours. Have you heard of polydrugs which is the prescription of too many drugs which can be unsafe and detrimental for a patient. Perhaps your mom also has too many physicians treating her without any professional medical oversight. I would have a one on one meeting with mom’s primary care physician and thoroughly review the medical necessity of all those doctors and drugs.
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BurntCaregiver Sep 2021
Ricky6,

You're definitely onto something about the polydrugs. That happens all the time especially with the elderly.
My last long-term caregiving job was for an elderly woman with LBD and pretty much bedridden. She was 17 different meds every day. Then it got to the point where her doctor would not refill her meds anymore unless she came in for an office visit (this was pre-Covid). He insisted on seeing her every three months and she would have to go by ambulance. So she did without all these medications for a while and actually improved. For example she took a high dose of Metformin twice a day for diabetes. Yet without it, her blood sugar was fine because we tested twice a day. She didn't need to cholesterol meds either at her age. All the meds she was on are pretty much the ones that are prescribed to all elderly people. Yet, when she did without them for a while she improved.
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How did you get stuck in this situation? Do you have siblings?

Heed the warnings of what will happen to you if you have no retirement savings.

Tell us some steps you could take to make things better for yourself and to extricate yourself from such enabling entanglement in your mother's life.
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ConfusedNinja Sep 2021
No other siblings or close family members, its just me
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I used to get frustrated with dad when he would miss one of his (or mom’s) doctor’s appointments.

In retrospect, a large percentage of the appointments were completely unnecessary and although they “had” the time, these doctors appointments were a drain on their “golden years.” could be somewhat depressing and prevented them from having time to do the things they loved most.
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Cover99 Sep 2021
It was not depressing for the doctors making bank
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Figure out what would happen to her if you were to get hit by a bus and killed or disabled tomorrow. It absolutely could happen, and if there is no backup plan, she would be in a very bad situation. Once you figure that out, start to extricate yourself by implementing little by little that plan. This woman is your mother, not your vocation and purpose for living. Please, please think of what YOU want out of life. Soon enough you will be 50 and then 60 and then 70. Your life will go by, so live it so that you will know that you lived it. It would break my heart to think of my daughter (now 23) devoting the next 14 years to me.
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ConfusedNinja, do these feel doable for you?

* Aligning every medical appointment on a set day, say every Friday (or whatever your day off is).
* If Mom books books days, you re-book them.
* If she insists on other days - she takes a taxi.

Or is it the *urgent* stuff coming at you at all hours?

If so, I'm wondering if there is a Nurse/Medical info call line instead? To triage & help make the decision whether attend Urgent Care or not?

I would also write down ALL the appointents, Mom's requests for urgent care & symptoms & discuss (as telehealth) with her primary Doctor. Maybe anxiety is part of this picture?

Maybe she needs a bigger 'game plan' approach to her health.
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I just experienced the same, except with my spouse. The reality has just sunken in to now being my own caregiver. The unfortunate thing is that I let myself go in order to take care of him. The same complaint "I don't want anyone else to do it". I could not see how it was burning me out and I blamed my difference of opinions and hurts on him. Do not let this happen to you. I am now suffering from depression, anxiety, bills and other self health issues that were caused from me not putting my foot down. Please find a service to care for her for 3 weeks, you need at least that. It will help you be able to get your head together and function. I refused to believe I had burnout and would get mad when my spouse would tell me so. It is real! I can now see that I should have let a lot of it go. The pressure to do everything for him by myself was closing me in on myself. That is all he wanted was to control my every move. Don't wait until it too late for your health to figure this out. You at least need 3 weeks by yourself. Let other family stay with her or bring in someone and go anywhere except there. She will be glad to see you in 3 weeks and believe it or not you will be glad to see her. It is just engraved in you at this point that you cannot not do this, there is too much to do and all kind of excuses but give this time to yourself and a must gift. This is a must for your owe health
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Cover99 Sep 2021
This is a subtle way of saying strongly consider placement?
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First of all, your mother refusing anyone but you has to stop today. She is the one who is needy not you so really the decision is not hers to make. You are not the only person on earth who can help her.
Speak very plainly and tell her she has a choice. Either she will accept a paid caregiver bringing her to the doctor's appointments, or she will go without medical care. Her choice. I'm sure she won't put stubbornness and orneriness before her own health care.
As for the 'getting paid to do nothing', there's only one way to handle that.

Mom needs a bit of tough love. She has to experience what life will be like if you really did nothing. Then stop. Don't accept her money and don't do a single thing for her. Do not help her in any way with anything. No rides, meals, housekeeping, paying bills, grocery shopping, errands, medication organizing, etc... Do nothing. Keep this up until mom changes her tune and learns to treat you with some basic respect. This probably won't last a day. Stop letting her walk all over you.
Arrange homecare services to help out for your mother then get a day job. It will be good for you both. My mother too has a collection of doctors. I spent years running her from doctor to doctor for nothing. She has some health conditions, but is also a hypochondriac. One day I just said 'enough' and got a job. Turns out I'm not the only person on earth who can get her to one of her doctors. In fact, I'm not even the only person she knows who can.
Your mother will continue to treat you like a doormat and servant as long as you continue to be the solution for all of her problems and care needs.
Take back your life. It will be good for both of you and will improve your relationship.
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One small thing stood out to me.

If your mother takes Metformin for her diabetes, it can cause significant stomach upset. Of the cramps and running to the toilet variety.

But it is time for you to set boundaries. And Mum will push back against them. She may call you terrible names or say you do not care for her. But that is OK, she is used to you jumping at her command, she will get used to you not being available.
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Cover99 Sep 2021
True Metformin can cause the runs.
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Re: to ur reply to Garden Artist.

What you wrote means Mom may be a hypochondriac and you are paying the price. You need to put your foot down. All tests have been run, doctors say nothing is wrong. Tell her NO. I am not taking you. You are an adult not a child and deserve to be respected. She needs you more than you need her at this point of her life. If she insists u take her, tell her to get a cab. Take senior bussing. Let her be mad. Boundaries by Townsend and cloud is a very good read my daughter says.

Guilt is self imposed
No is one sentence
You are not responsible for someone's reaction to your No. (From the book Boundries)
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Please take control of the doctors' appointments and other aspects of your (caring) life. Please get a job with consistent hours/days so you can schedule your mom's appointments and transportation needs around your work schedule. Your social security will be based on the highest-earning 20 years of your work life. You also will get more money the longer you delay taking payments. Please start getting those 20 "good years" established for yourself since every person usually needs it it in their latter years.

Visual impairment does not mean that you need to be with her 24/7/365. My 79-year-old aunt lives by herself in an apartment. She became blind from glaucoma and retinitis pigmentosa about 10 years ago. She has good friends who help her with transportation, bill paying, groceries... all the "sighted tasks." She organizes her pantry so she knows exactly what is where. If she needs to, she can call for a cab or Uber with her cell phone. She has learned a little braille to help with labelling shelves and items. Unless your mom has Alzheimer's dementia - that causes difficulty remembering short term - she and you can do something similar.
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These doctor are churning and self-referring. Some geographically distant appointments might be suitable through Telehealth, if not, seek out a closer alternative. In general, only send her to the appointments that are necessary.

You should attend only the most urgent appointments with her. When you are there and a doctor tells you to bring her back in a week, explain the circumstance.

For the others, hire an advocate or seek out volunteers among family and friends.

Creat an online sign up using a website like sign up genius to help manage the schedule.
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Frankly, it's time to talk to her primary care physician and ask which doctors are really necessary and ask that PCP to coordinate Mom's care.

There are things that need doctor visits and ones that don't. If a condition merely needs to be monitored, then PCP can probably do it and prescribe any meds as well.
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"I'm not sure what to do, she refuses to have anyone but me as her caregiver".

She does not have this right. Point that out.
Help her call an agency to set up a weekly carer for every X day. She must make all her appointments on X day.

You reduce your hours down to what is reasonable for you - my Aunts did ONE day a week. Any more than that must be spread over other people.
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I hope you don’t take this the wrong way, but I think (inadvertently) you are enabling your mother’s helplessness. By her not accepting help from anyone else, or not gaining the self-confidence to do things alone, you have always given in, thus enabling her to become helpless. In essence, you’ve helped create this very problem.

Your solution is to be bad guy here. There’s no two ways about it. As other people have suggested, you just have to say no. She won’t like it, because she’s scared. There will be fear, resentment, and yelling. Maybe even ignoring, but it’s just childish behavior stemming out of fear. Because you’ve allowed her to always be treated with kid-gloves, she’s never grown into an independent person.

There will be growing pains. You just have to be an adult in the relationship and both of you need to put your big girl pants on. You have to get over the fact that she’s going to be “mad and disappointed in you”, even though it’s got nothing really to do with you. And she needs to realize that she CAN do this, and the world is scary, but even getting another helper is a step in the right direction.

Be strong. You both can do it.
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I’m not sure where you live but I’m on Florida and we have a dr on call in home service (they send an NP to the house for check ups or if I need them to check anything - they send blood draws from in home as well as urine pick ups and I recently found a in home podiatrist and ophthalmologist. I still take mom to her neuro and her old primary etc when necessary but many fields in my area have begun in home visits. Maybe if you could find a few that would do in home or FaceTime checkups when you are just doing follow ups that will help. We have even done gastro and psych by FaceTime check ins when possible.
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No is a complete sentence.
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I have been taking care of my mom for over twenty years. I know what you mean about the appoinments. Before Covid we were running to appoinments every single week some 3-4 appointments. Now she has a few doctors but some only see her now every year. Makes life less stressful for both mom and I. My niece does all the banking now and I still do the grocery shopping but once every 2-3 weeks since Covid. I used to shop three times per week. Sit down and write down what appointments are most important, and then cut down some and of course speack to her doctors. It really is too much for an elder running all the time. My mom has many health issues as your mother but I keep a very close eye on her and she does have an RN every week. It is so nice to look at the appointemtn book and see we have a few days off most weeks. You started so young to care for your mother. Any chance you can hire some help, and put your foot down about hiring a caregiver. Explain to your mom you need more help otherwise there are always other options.
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Dear Confused Ninja, if this all started when you were 17, you have been trained into the situation for all your adult life. Doing things differently must be as difficult as walking out of a convent – no home, no skills, and still caring so much about someone who is blind and deaf and… and… and…!

It must be really hard for you to look at things logically. Logic says that mother can ‘refuse to have anyone but me as her caregiver’, and that equally you can refuse to be the caregiver. That leaves mother to find someone else.

I don’t normally go much on the ‘talk to a therapist’ line, but I really do think that it’s appropriate for you. You have so much to sort out in your own life and where you go from here, as well as how to deal with mother’s demands. The doctor’s appointments are the tip of the iceberg.

Please get some help. Love, Margaret
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ConfusedNinja Sep 2021
Thank you for understanding and not judging me. This is the only life I know. Ive had a job since I was 11 and always treated as an adult.... im the only child/last family member she has and puts so much criticism on me. No one can relate bc they're situation is very different but I thank you so much for sharing such kind words i cried
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You don't have paratransit and/or a senior service that will take her and bring her back from these appointments? Many cities do, and the costs aren't that much.

Besides, why does she have an appointment ever week and why isn't her PCP, I take it she has one, not raised this issue as well as, if these are insurance covered, the costs can add up pretty quickly?

Seems mom needs something else to do, then always be in the doctor's office,
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Visiting Physicians Association has helped save my sanity! Everything from check ups to X-rays are done in patients home. They are not nation wide but do serve several states.
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You have allowed and enabled your mom to continue using you for her apparent obsession with going to the doctors multiple times a week, and only you can make it stop. I can't help but wonder why you've allowed this nonsense to go on for so long. No one should have to go to the doctor that much regardless of their health issues. And why aren't you just setting either virtual appts. or tele visits for her, as all doctors are now doing them since Covid?

You do realize that you are only hurting yourself and your future, by not working a fulltime job at your age. You will have no earnings when it comes time to apply for social security at retirement.
Something has to change and only you can change things. You do not owe your mother anything, especially your life or your future, and until you really understand that, things will remain the same. Your mother is being very selfish, and as long as she has you to use and abuse(yes, she's abusing you)why would she want to hire someone else to do what needs to be done, when she knows you will do it? If you were to say enough is enough, she would have no choice but to hire someone.
And if your mom requires that much medical attention, then she really needs to be placed in the appropriate facility where she will receive the 24/7 care she requires.

It's time for you to get your life back, and quit being at her beck and call. This nonsense has gone on long enough, so put your big girl panties on and tell your mom, that you're done being her slave, and that she will have to find someone else to use, or move into a nursing facility.
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Hi! Just wondering, if your mom has been to both urgent care and the ER for visits for breathing, etc. and nothing is ever found, could it be that she is having psychosomatic symptoms. Yet, while these may be psychological in origin (not physiologic) she will still feel them as if "something were wrong" with the "afflicted" area. Because she can't see, she may having anxiety issues that are expressing themselves as physical issues. You might want her to see a psychologist or psychiatrist (yes, she'll put up a fight, they always do), but it's part of the stigma of mental healthcare. If her pancreas was the issues, she'd have no problem getting to a doctor, but just because the brain/mind is having an issue...nope. Anyway, at 37 you seriously need to get to work. I am guessing your mom is in her 60s or 70s. She could well live another 20-30 years, and then when she dies how do you live? You won't have social security or savings. She has to have another caregiver in addition to you. I understand a demanding parent--but really, you have to steel yourself for the argument. You must make a living now. It's really not an option for you not to work, believe me, I've had friends fall into that trap and now in their 60s, they are in dire financial straights and they don't have kids to take care of them. Please, please, take care of your mom but you have to take care of yourself.
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CN, CW is right - fit the appointments round your schedule, not the other way around.

What does your mother mean about your getting paid to do nothing? - if she won't pay for a caregiver and thinks so little of your job, I'm confused about how she supposes people's bills get paid! The best things in life are free, eh?
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I just read your latest update. Stop, just stop. You need to learn that you don't have to jump every time she calls, your time and your needs are just as valuable as hers. 🤗
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I your doctors are like ours you tend to get a phone call telling you "we've booked an appointment for Mrs Smith on X day". You need to get on the phone to re-book any necessary appointments for a day and time that works for you. And you seriously need to learn to just say no to multiple appointments that are merely meaningless chasing around in search of a different answer.
No mom, I can't take any more time off.
No mom, I'm not willing to drive over an hour away, you'll have to see someone local.

My mom was legally blind at age 75 and lived independently until she was in her 90's. I mostly visited weekly to help with her shopping, pick up her mail and pay her bills but when I couldn't be there I knew she'd be fine - she had a lifeline button for emergencies and home care once a week.
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She's hit me before for bringing her late to some of her Dr appointments but I was working a contract job (centered around her drs appointmens), going to school and taking her to all these drs apptm urgent care and er visits and pharmacy after each of these appointments.
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cherokeegrrl54 Sep 2021
If she has physically hit you, thats where i would draw the line as to doing all that you do. Im surprised that you havent suffered complete mental and physical exhaustion. Begin putting your health first and create boundaries!!! Sounds like she has conditioned you that your life is to care for her every whim. Its you that will be going to an early grave, is that what you want? Then mom would be placed in nursing home where she will get the care that they deem necessary. Please take some time and begin caring for yourself first!!
also as to her physically hitting you…that would stop and you need to be the one to tell her. If she hits you again, its back home she goes….begin looking at placing her
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Are these appts really necessary. Has she stabilized with some of her health problems and the appts can be cut down to 6 months or even a year. Can her PCP take over now she is stabilized. I really feel these Drs milk Medicare, if you Moms on it. Not that they are causing a fraud because Medicare probably allows the visit.

My Moms PCP had her coming back every 2 months. Why my Mom was healthy. Even his nurse questioned it the first time I took Mom. I told the nurse if he asks "And why are you here today" she won't be back unless she is sick or needs refills. He asked and we walked out without making another appt. One doctor she was sent to because she had a thickening in her upper stomach. He felt it was caused by years of acid reflux. We went every 6 months for a year, and then I asked for 1 year, then when she went into LTC I stopped him. Another doctor agreed to a year as long as I got labs every six months. You may want to talk to her PCP and see if some of these doctors can be combined in some way.

If Mom is capable and these Drs are local, get her to use the Senior bus for her appts.
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ConfusedNinja Sep 2021
she is blind.

I gave a more detail explanation regarding her health in the comments below.

She keeps saying she is still having stomach issues, skin, etc but mostly stomach and they are not addressing it.

Also chest pain, breathing issues which is why ugent care always refers us to ERm thdn half a day later ER tells her they don't see anything follow up with primary and the cycle continue
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Your profile states:

"I am caring for my mother Stacey, who is 38 years old with diabetes, hearing loss, and vision problems. "

I'm assuming you're 38, and your mother is older?   

Also, as to each of her medical issues, it might help to list what's being done now, and what can be done, within the confines of your hopefully changed situation.  I.e., is she monitoring her own diabetes?  If not, why?    How is hearing loss being addressed?   Does she wear glasses?   Or are there other vision issues?

Look at each issue individually and think how it can be addressed better, with less doctor appointments and more self care (although I suspect that might be challenging for her if she's used to your support of her needs).
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ConfusedNinja Sep 2021
The vision and hearing thing are not going to come back.

She has a lot of drs appointments bc (she says) that her situation is not being g addressed so "take me to another dr"

Also a lot of visits to the urgent care and ER bc we can't get in her primary drs in short notice.

The urgent care usually send us to the ER, then several hours later the ER (which doesn't deal with chronic issues) refers her back to her primary Dr.

We then get an expedited appointment to her primary drs office which do a bunch of tests find nothing, tell her to take Tylenol and go to urgentcare/ER if symptoms persists.

Then we are back to ugent care and its ground hogs day
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