I started helping my mom around 25 years ago with lawn care, grocery shopping, fixing things that was needed for the house, going to Dr. appt with her, and what ever else. At that time I didn't mind, but here I am 25 years later and in the past 10 years the list has become much larger and more demanding. In the past 5 years I have spent weeks at a time 24/7 in hospitals with her after open heart surgery, broken hip, broken back, etc...She is afraid to be alone in a hospital. My mom has heart issues, lupus, severe osteoporosis, anxiety, depression to name a few. She has always been the strongest woman I know! Not anymore and its heart wrenching to see. She lives in her home with my mentally challenged sister. ( who is able to help with daily activities like make coffee, or get something mom needs) it allows me to not have to live there. However she is limited on what she can do, so I do the rest. I have two brothers who dont help much. “They can't handle it” 🙄. Since her heart bypass she has developed anxiety!! Dr. prescribed medicine for it which she at times has taken too much, when mixed with her pain medicine (I hide her anxiety meds and her pain meds now. After her back was broken it caused her to hunch over severely which has caused her ribs to push on her esophagus, and that makes swallowing difficult. She weighs 90 lbs from 160 three years ago. She also has Reynard syndrome in her hands and feet, also has bad circulation in her legs which is causing wounds on her feet, toes and legs. We were doing wound care twice a week, and they were improving, so we stopped. Then the covid-19 came and I wasnt spending as much time there because she is high risk and I am an essential worker. So the feet have broken down again and she banged her leg and caused a wound that wont heal. The answer the Dr gives it to quit smoking! Ok shes 75 years old with numerous health issues. Is it going to make a difference at this point? I ask that, because when she does try and quit, I am called all hours of the day and night because she is having a full on panic attack! I get called at work, I get called 2-3:00 in the morning. She wont quit!! and because of that I feel the Dr, doesn't care to help with other issues. The other day she threatened to kill herself, if she cant get help!! ( how am I supposed to help) I am not a Dr, and I am not giving her anymore medicine than is prescribed. I told the Dr that today and his response was, “well she would rather smoke than live, she is fighting to not have to quit smoking.” She also suffers from restless legs. She goes days without sleep. So she says. But times I go to the house and shes asleep. I could go on and on, but thats the brunt of it. I know my mom is suffering in more ways than one, and I do whatever I can, but I am truly at my wits end!!! She doesnt do her exercises, she wont take a shower!! She cleans up but thats it. I cant force her in a shower, I cant force her to eat, exercise, do small little tasks. She mainly sits around the house, either smoking, on her computer trying to find the “cure” for her and thinking about death all the time. I have tried giving her small things to do, she does it one day but wont the next. It’s stupid, boring or she just doesn't want to do it! Everything I do seems like its not enough!! Cook her food, “doesn't taste good. On that note and since I have really gone to town complaining any advice would be appreciated on how to handle these situations! Thank you to however takes the time to read my long post. Its 4:00 am and I cant sleep trying to figure out what today will bring, so I am just venting on here. Maybe that will help me sleep!
I am so painfully sorry for what you have endured thus far & can identify with you in SO so many ways. Not sure how much help I can give just yet but I can sure identify and sympathize.
My mother is almost 95 and has lived with my husband and I (in an in-law unit she had built) for almost 12 long years now.
Because I have difficulty with guilt and setting boundaries I unenthusiastically, along with my even less enthusiastic husband, agreed to let her move here (she always told me she could never live in an ALF).
I have had a difficult relationship with her my entire life, though she isn’t introspective enough to realize it.
My only sister is mentally ill, has severe ADD & has never held a job. Thank god my parents had the $ and the foresight to create a special needs trust to begin after they were gone. Sadly we hadn’t anticipated my mom’s complete mental decline over the past 7 years.
My parents (mom) never set any boundaries for my sister so she always got & did what she wanted knowing my parents (mom) would bail her out. She was never held accountable & would sometimes call my mom 12 x a day ... every day.
Suddenly, up until a year ago, I was responsible for all my sister’s nightmare problems/needs, as well as my mother’s. I worked full time and my husband has many compound health issues (retired last year).
Mom has had several small strokes in the past year and now needs 24-hour care with 4 caregivers instead of the care she was getting between 2 caregivers and myself. The only thing she can do unaided is eat and “visit” a bit though it’s always in the moment. It’s very sad BUT,
I am now just at my wits end. I’ve hit an invisible wall and have come to resent her and all of her picky, ridiculous, annoying, OCD ways so much that I don’t know how much longer I can contain my anger. I have run completely out of sympathy. I am so grateful she can afford the amazing care she gets from her girls, but the majority of my day revolves around her (I am now COVID-retired). My husband is a huge help on the legal and financial management front but I manage all of her girls, her personal needs, supplies and every other aspect of her life. For the past 8 months I am increasingly needed for every trip to the commode, on top of everything else. I feel I have to be home every 2 or 3 hours to help the caregiver toilet her as she has also gained weight (now 185lbs) & then she wants me “Visit” and is ALWAYS having some picky little annoying “problem”. Compared to others in her situation she is the luckiest ‘fricking woman in the world! My husband is always last.
There are so many more details to this that I could go on for pages and pages but the rage might take over and my head would explode. Windyd, you have my complete understanding.
So many questions to ask in the future but I’m sure you’ve had enough of me for now.
It's easy to say but diet, diapers, and round the clock care for mom would ease your life. Without adequate rest and recovery, you will be no good for mom at all, even with her living under your roof. With four girls, you should not have to "help" with toilet care and mom's bowel/bladder timings should be well known by now. The help is taking advantage of you! I'm MrsHoover and I change my 150+ lb husband's diapers alone several times a day. The help can handle mom alone and give you more quality time to give my the face-to-face time she wants. Good luck and write back. Help is here.
I am looking at nursing homes ,and moving forward.
You need to take care of you ,you can put your mom and sister in assisted living ,together
You can get mom to hospital ,and get mental health doctor for you ,explain your anxiety and stress and they may help you from there .
I'm in Canada ,so I understand our health care is a different system !
I do wish you luck for your future !
A'll the best with everything!
You have more than you can handle and you are burned out. You could break and your mother will experience abuse from you. Does she qualify for long term nursing care. Or hire someone to do your stuff and a lot of hers. Get out of your mind to take her off meds. She needs the right stuff for anxiety and be monitored...challenge the Dr. to get plugged in and "manage" he meds. You need help in why you took her off those meds. A shrink can better diagnose and get her on proper meds. Hire someone to do a "care assessment". You will get to deep in "the woods" and can not see your way out. You are becoming "a patient". You are "situationally depressed"
Tell your mother that you are FINISHED helping her in ANY way until SHE starts exhibiting some SELFLESS behavior that you can witness firsthand. Like, oh I don't know, she quits smoking for instance? She stops talking about death? She starts taking a shower? Starts exercising? Gets a GRIP on HER life, in other words.
Then and only then will you CONSIDER helping her out on YOUR terms. You can't save a person from herself, especially in this case. She has enough issues to have killed 25 people by now, yet she's still going strong, like the Energizer Bunny. If you're not careful, my friend, YOU will die before she does. Stress has a funny way of doing that to a person.
Turn your phone off when you sleep (for real) and let ALL the daytime calls go directly to voice mail. Deal with this BS of hers on YOUR terms. On YOUR timeline, or not at all if you don't feel like it.
You can't really blame the doctor for not wanting to help her until/unless she stops smoking, either. I remember reading about a diet/nutrition doctor who opened a diner in Nevada called The Heart Attack Grill. He offers menu items such as The Bypass Burger and potatoes fried in pure lard; everything is super high in calories, fat & cholesterol. Know why? ALL of his patients refused to toe the line; they all had more excuses for why they 'couldn't' or 'wouldn't' change their lives and lose weight to get healthy. So he said Screw It, and opened this restaurant where all the waitresses dress in nurses uniforms. You want to kill yourself? Come to my place and go for it! His customers can also order a side of cigarettes with their Butter Milkshakes and lard fries. If you can't beat em, join em.
PLEASE take care of YOU now and leave mother to her own devices. She obviously knows how to survive.
You need to set healthy boundaries for your own self preservation. Decide what to cook and then let the complaints slide off Go "Grey Rock" with your mother. Some people can never be pleased.
"It doesn't taste good"
answer - "That's too bad" or something else neutral.
Keep it light and neutral. Don't engage with her complaints.
Put yourself first like the parent who puts on oxygen before putting it on the child. You depend on yourself and your mother depends on you. You need to keep you in good shape. There is no shame in sharing the burden of care giving her or of placing her in a facility She may well be happier there with more people giving her attention.
She has cardiac issues, and given the large weight loss, may have something caled "cardiac cachexia." This is generalized significant weight loss in patients with severe cardiac issues. I have seen this in a number of elders whose bodies were shutting down.
You just have to suck it up and do good things for yourself, and stop letting her eat your life, your mind, even the simple ability to be happy within yourself. You should do it NOW, because the more you let yourself be used, the less love there'll be, and the more downright anger and even hatred will rear their ugly heads until you're someone you don't even know.
I've put the both of you in my prayer family, so you know that every day you and she are being prayed for. May God bless and keep you both!
Ive been living with my 80 year old mom for 13 months. She begged me to move in with her and I knew I wasn’t going to like it but I’m the only kid she has since my sister passed when we were kids.
My mom was a smoker and that was the first stipulation I made before moving my things to her house, NO SMOKING. I got her a vape pen and she sucks it 24/7 but at least it’s not cigarettes.
That being said, she too is also manipulative and “helpless” and is on Facebook all day.
When my burnout started (after about 4 mos of being here) I started spending more time in my room bingeing Netflix.
I make her meals and assist her shower time, but other than that I don’t hang out with her much anymore because I’m tired of the complaints and gloom.
She’s gotten used to my distance.
Its not the most comfortable situation, but you have to make boundaries where you can. I talk to her on messenger more than I talk to her in person even when she’s only 20 ft away, lol. I also got her an Alexa device so she can talk to it and listen to music. It helps.
Good luck 🙏😷💕🎶
If you mom still smokes and she eventually ends up with on home oxygen she is going to cause an explosion. Smoking and oxygen is like playing with a bomb. Even vaping has been known to cause massive explosions, because of the high-energy lithium battery. Be mindful if she ends up needing home oxygen, you need to keep this in mind.
Alternatives to smoking include nicotine patches and there are medications that help...but she cannot smoke and use home oxygen at the same time.
Here is an excellent article regarding home oxygen and the dangers of smoking, including e-cigarettes.
https://www.oxygenconcentratorstore.com/blog/smoking-and-oxygen-therapy-what-you-need-to-know/
Evidence-based research regarding the dangers of smoking and home oxygen including using electronic cigarettes (they can cause explosions).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4390016/
I feel for your mother and her situation, but she is not willing to do what is needed to get better. Please have a doctor examine her to decide if she is mentally competent. If he/she determines mom is competent, then get better boundaries with your time with mom. If mom is not competent, you need to decide if your sister is able to meet mom's needs when you are at work - and allow her to do so. If your sister is not able/competent, then your mom needs full time care... probably placement in a residential facility.
I do not know what state you are in, but in Minnesota we have some great supports for family members. Contact your county public health agency. They can help you find resources for your mother and assess the dependency of your sister. Next contact a lawyer to make sure that you or one of your brothers is your mother's POA for both financial and healthcare concerns. Her primary care doctor (make sure she has one) can assess her to determine if she is completent to make those decisions for herself.
She is entitled to some support at home from Medicare. You do not need to be the one to provide nursing care in her home. She should have a nursing case manager through a Medicare certified home healthcare agency.
I have been in a similar situation, and my mom is at the end of her life. On the advice of her brother, she contacted a lawyer and set up a living trust. This appointed me POA for healthcare and financial matters. It sounds like your sister will need care, and that can be set up too if your mother has been her legal guardian.
Going into counseling for you can help you to set up your own goals to get your life back. I can tell you that from experience, you cannot be an effective caregiver for your mother, supervise your sister, be on the front-line in your job, and keep your sanity. If your brothers are unwilling, and sister is unable, you need to call in help.
Your mother's caregiver may SEEM to not care. As a professional nurse, I can tell you that as a healthcare professional you cannot make people make changes to improve or maintain their health. It is not insensitive to advise individuals and then back off. We all make our own choices, and the professional is consulted to educate us on our options. You mom is making her own choices.
Your mother has learned how to manipulate you to get what she wants, and you have complied. I can relate. She learned this behavior from someone or in response to her own situation. I understand. I grew up with the queen of guilt, and it wasn't until I was in my 30s that I started to understand her behavior, and to modify my response.
This is something that the manipulator counts on. They do not have insight into how their own behavior impacts others, but they are masters of getting you to behave in a way that benefits them for good or not. This is why I say that you are co-dependent.
You CAN hang up that phone. You CAN stop responding to her constant calling. She IS manipulating you.
If she falls, call 911. Do not run to save her. It is not your job. Have the fire department or police department install a lock box on one of the doors so they can get in when needed. Tell them about the situation. Be clear with her that if she falls and goes to the hospital, she will be there on her own during this pandemic. It may be the best thing for all of you.
It's about choices: whose choices are whose to make. Your mother's choices, and your choices, and who is really in charge of what.
Your mother will not make choices that are - the medical world among others would say - in her best interests. That is her right. That is fine. If she understands and accepts the consequences... nobody can say her nay, including you.
What you have to accept is that you cannot solve this for her. You can't make the world gloriously exciting, interesting and comfortable for her. You can't give her a different life from the one she's spent all these years shaping.
And to take the pressure off yourself, you also have to look at your own choices. How much time are you able to give her without inconvenience or excessive stress? What support that she needs might be better provided by somebody else - a gardener, a shopping escort, an HCA, even a personal trainer! Have a good look at what you currently do for her, and see how many battles have really been worth picking. Then keep those, and get rid of the rest.
And go to sleep!
Don't think about this until daylight, but what's the plan for your sibling in the medium to long term?
You need to grt Out of this situation asap. Your mother is Selfish and UnAppreciative. She Obviously Doesn't care about her health Or Yours.
40% of caregivers Die Before the person their caregiving for.
At this point You need to decide whats best for YOU. Your mother has already made her choices in life and the answer to each one was she picked Herself over You. So why are you continuing to feed into her sickness? Are you OK with being her slave and being crapped on? If you like that then stay. If you don't like it then you need to Immediately send your Family&Mother the message in Writing that you are Burnt Out and are Unable to continue and Someone Else or a Facility needs to take over starting NOW.
Thats your answer. Like it or not.
Either you keep doing this to yourself...you Have the power to stop it. Notify Everyone that you are no longer going to live like this and unable to keep it up OR stay. Your choice.
There are facilities she could go to.
If she looses her house and most of her belongings not your fault. She has other family members that can help her.
It's not cold or cruel to choose yiur own happiness and well being. The alternative is to wait til it kills you which will happen at the pace your going your life will be shorter and unhappy.
Truth hurts and being an adult sucks a lot...but your pain and unhappiness is going to last as long as You let it.
First, you should have continued the woundcare until the sores were healed. That may be why the wound doctor has no compassion. You discontinued care. Smoking, you should just let it go. Mom is addicted. And trying to quit may just add to the anxiety and depression she already suffers from. And NH? You may not be able to keep her out unless you are willing to jeopardize your job and future earnings.
At this point, you just have to let Mom do what she wants. That would take some stress off of you. Except that she is killing herself slowly. Sorry if this sounds harsh, but with her health problems she may not have lived to a ripe old age anyway. Your sister is who I would worry about. What will happen when Mom dies? I know, one thing at a time.
You filed your question under "burnout - family caregiver - stress" and the only solution is for you to stop, objectively look at the situation your mother has created and figure out what you are and are no longer willing to do for your mother. Unless and until you are willing to step back from the caregiving role your mother groomed you to accept, nothing will change. You are an adult and adults establish healthy boundaries including with their parents.
What does your mother do about her smoking during hospital stays? Stopping smoking (even at 75) does have immediate health benefits, particularly if there are heart or blood pressure issues. It lowers the risk of heart attacks and strokes within days. I understand it also helps liver and kidney function as the load of removing toxins from the blood is reduced. But it's not easy for a life long smoker to quit either.
We get into patterns when health issues begin and often don't review what we're doing. When your mother was able to get around well, living at home with your disabled sister wasn't as socially isolating as it can become when your mother became less mobile. Illness and pain can bring on anxiety and depression that's difficult to pull out of without help, including medications and more social interaction. With CV, safe social interaction is much more difficult. Assuming the CV rates in my area remain low, my mother will begin attending adult day care again the last week of May. Even though we have several of her great-grandchildren through the house daily, my mother misses getting out and seeing friends her age. I take her on rides through the country side, sometimes with an occasional stop at the DQ drive thru, but still my mother is not doing quite as well at times as when she attended adult day care. Maybe your brothers or their families could visit or call more often? Are there church circles in your area having video conference calls for their meetings? Any opportunity to increase your mother's social interaction beyond just you should be taken.
While she still has some freedom (to smoke, for example!), you appear to have little to none. Why is that okay with you?
Your mother has allowed your brothers to get away with not helping. Why doesn't she insist on their help? She is okay with the stress you are under. Why is your wellbeing unimportant to her?
What about outside caregivers?
And many have made “the promise” and then found themselves in situations where there was no other choice. Our family found ourselves there with my mother after a devastating stroke. It’s okay to acknowledge when situations have changed and the choices aren’t so easy anymore
You need to set boundaries. This might not apply in your case, but I became very resentful that I was expected to do all sorts of things for my mother. My 3 brothers live out of state, so it wasn't that they could do that much, really. But my mother was very unappreciative of my help, and that was very stressful. She said my time wasn't worth anything, and that I wasn't to ask my brothers to do anything (even things they could do from the Internet). I eventually ended up getting paid (she didn't know; she told me, "You don't pay family!") $20/hour, including back pay for the 2 years prior since she'd given up driving and I because the "Dummy Daughter Driver." That helped a good bit; I considered it a job.
Is your mother becoming emaciated at 90 lbs? Or was she overweight before at 160? (How tall is she?) It really sounds like her needs can no longer met in the home. I take no caregivers come in at all?
Do you have HCPOA/POA? I take it she is still considered mentally competent?
Before this, all caregiving fell onto my shoulders "because I was unmarried without children" my brothers always claimed they didnt have time for mom because they were married with chikdren....ironically, my lack of a personal life is how I got selected for isolation work in the first place (rolls eyes).
Whilst the work is hard and life threatening...it also gave me a chance to step back from main caregiver role....it forced my brothers to contribute more.
You are an essential worker. You should use this opportunity to force your sibblings to step up. Tell them that you are an essential worker, and you can't afford to expose mom. They will HAVE to understand.
When my husband had open heart surgery in 2005, he was put on antidepressants while still in the hospital. Apparently having open heart surgery leaves you prone to anxiety and depression and the hospital saw much better outcomes when antidepressants were prescribed.
It sounds to me as though your mom needs to be seen by a geriatric psychiatrist who can get her started on the right meds. Neither of you should have to live like this.