I've been lurking mostly here since my dad passed away at the end of September after a 20-year roller coaster illness. I am now the sole caregiver for my mom who has more health issues than I can possibly type here.
My mom is very resistant to everything I suggest: moving her close to me (I live 1,000 miles away but have been here with them since MAY!) but to an assisted living community where people can care for her daily; getting in-home care in the short-term; talking to someone about her grief, her wanting to die, her pain.
All of it falls on deaf ears, and she just wails all day long about everything. She had a stroke in 2002, and it really changed her personality. She became timid, fearful, and her emotions know two speeds: 0 or 200mph. Everything is met with the same level of hysteria: she has the same reaction to telemarketers calling that she does when we talk about missing my dad.
All the advice here points to me continuing down the road I'm on: selling the house, getting her finances in order to be able to pay for the assisted living, and finding her a place to live near me. But on a daily basis, she tells me she doesn't want to go, that I'm "dumping her in a nursing home," that she wants to die before any of that could happen.
I have tried to explain that there are people trained and skilled in taking care of her in ways I am not. She fell out of bed recently, and we had to call 911 to have EMS help me pick her up. I bathe her; I change dressings on pressure sores from her staying in bed too long; I get her in and out of bed with the ring of my phone every single night, multiple times.
She is afraid to have someone else do those things because they'll laugh at her. She is very heavy, and her body has been through a lot. She constantly says things about them taking photos of her and posting them online. The self-hatred she feels makes her believe no one could like her, no one could look at her without that hatred she herself sees.
At the same time, she said she knows she has "ruined my life." But every time we talk about how we could work to make it better, for both of us, she says the answer is her dying, where she can be with my dad.
While she's always been a pessimist, especially as it relates to herself, she truly has taken it to a new low. Every single thing is a doomsday scenario, the worst possible outcome. She watches a lot of TV, so she envisions elder abuse, people stealing her money, me running away with her money.... if it's been on a soap opera or Law & Order, she is pretty sure it's going to happen to her.
I'm an only child, and I have literally dropped everything countless times to come help them during both of their illnesses. I moved back in when we thought my dad was very near to a liver transplant in 2015 (he got too sick to have one, so I went home after a year). I have tried to give back to them everything they've given me as parents, because they did sacrifice to give me the best upbringing they could. I do believe I owe it to them to help, and I love them. I care what happens to my mom, and I do not want her living somewhere where people don't help her or make her feel badly about the body that is failing her. She is a good person who is blinded by her physical and mental pain. I know I cannot fix her, but I also cannot get her to try to fix herself.
I am seeing a therapist here to try to work through my grief, my depression at leaving my own life (I haven't seen my boyfriend who I live with since May), my stress trying to work remotely while being my mom's caretaker... but we're not making much progress. I don't have time to grieve or process my own emotions because I'm trying to deal with my mom's emotions.
I know many of you are in this situation, or have been. Any suggestions are welcome. I think I just needed to get it all out here. Thanks for listening.
If mom has given up, you might ask her and her doctor if it's time for hospice. If mom is truly "ready to go" then she should be willing to formally declare that and forgo curative treatment.
I might bring that up with mom, and see what her reaction is. But in addition, let me reframe this situation for you, since you brought up codependence.
Your presence is enabling mom's codependence. It seems like the only thing that is going to change mom is YOU changing YOUR words and actions.
Can you act, even a little bit; do stand up? Like Miss Maisel?
(I ask this because with my mom, I often felt like I was playing a part, doing a "bit" when I went to see her; I gathered my "material" during the week, rehearsed on the long drive and performed for 90 minutes in her NH room. I played the chipper daughter. I was anything but, but for 90 minutes, I did it.)
So, you need to play a role here. It's called "tough love girl". Here's the outline:
Middle aged soft hearted professional relocates unwillingly but lovingly to help her debilitated mom in the wake of her dad's last illness. Buries dad but can't let go of mom, who sinks into depression, the beginnings of cognitive decline and spiraling anxiety.
Needed: Daughter needs to separate her mother's needs (mental health assistance, cognitive evaluation and a supportive living environment) with mom's wants (only assistance from daughter, remain holed up at home, terror at change possibly fueled by paranoid/delusional ideation).
Script: "Mom, there is going to be a change taking place in January. I've booked my flight back to Chicago; my job/boyfriend/landlord (pick the bad guy to blame) won't tolerate my mot being there any longer, so I must return in order to have (a job and retirement benefits/love/a home)."
"I know that you love me and would NEVER want to hurt me; right now, your choices are hurting me...a lot."
Only you know the situation that mom is in; you need to come up with your own script, but I hope you get the idea. Write it out if you need to, because this is a role that you are not used to playing in this relationship. Role play it with your therapist if you need to, and DON't fall into the "but mom will never agree..".YOU'RE the one in charge here. Mom is a bowl of Jello.
Get a referral for a geriatric psychiatrist from mom's doctor. You need to start here because psychiatrists seem to be the last medical professionals in the world who actually SEE the whole patient, mind, body and soul. Mom's brain and soul seem to be broken and worn down. Getting her on the right medications will be the first step to getting her whole again.
Make the appointment. Get medical transport if she's going to be difficult. She needs much better medication management than she is getting. She DESERVES better med management than she's getting.
On another note; if you need to call 911, insist that mom be taken to the hospital to get checked out. Once there, get the social workers involved and insist that mom needs placement, cannot return home safely (because you're returning to work, etc). This CAN lead to rehab (if mom is in the hospital for 3 nights). Rehab can in turn lead to long term placement.
I know that you CAN'T make mom doing anything; she still has the right to self-determination. But so do you. She doesn't have the right to demand that you enable her charade of independence.
Please let us know how you are doing. We care! ((((((hugs)))))))
Funny note on the acting bit: I have a degree in theatre. So yes, I'd like to think I can pull a Midge Maisel.
The role I play is a more empathetic one, and it's totally backfired. I'd like to just lay down the law and tell my mom to suck it up. But I've watched over the years how she reacts to that, I've watched her delicate mental health teeter back and forth depending on how someone talks to her. So I went in the other direction, cajoling her into doing things by telling her how much we love her, that she is worth more than she knows, that she deserves some comfort and peace (I stopped using the word happiness because it angered her).
We have some legal things that need to happen in January (I have a court hearing to remove my dad's name from the house, so we can sell it), my mom's appointment with Social Security (it taken months to get this appointment) to figure out what her monthly income is going to look like, meeting with the financial advisor once we meet with SS... all before I can logistically take the next steps.
I have a friend's dad who works in senior care narrowing down facilities for me at home, so I've let my mom look at a few of them to get a sense of what we're looking at.
We also have an order written from her doc for physical/occupational therapy, but we haven't been contacted for the assessment yet. We keep calling to check in, but they haven't gotten to us on the schedule.
So... some steps have been taken, but they're only because I've done them and pushed my mom to do her part.
The mention of hospice threw me. She assumes she needs skilled nursing, but I believe with some occupational therapy, assisted living would be ok. She doesn't need 24/7 care (even if she wants it).
The next couple of weeks are going to be extra hard because of the holidays, closures, etc. And us sitting here being reminded that my dad is gone.
In all of this, I also miss my dad. She misses him. Grief has rose-tinted her lens, so she thinks everything was fine when he was here. It was never fine, but it was what she knew.
Thank you for thinking through all of this with me. I am genuinely touched at everyone's responses and words of support. I feel less alone.
"Mom, this isn't working for me and it can't continue, I'm going back home at the end of January and we need to have you settled before that. If you can't decide on the options we discussed I'll just pick the one that makes the most sense to me."
Make it clear you WILL leave and that any resistance means she will have to go it alone.
You came in a crisis, the crisis has ended. I'm not generally a hard azz but I don't get allowing a parent's needs to supersede your own - the hard reality is that somebody is always left behind after a death, your mother isn't unique and she can/will survive.
Children do not "owe" their parents for raising them well. That is a parent's duty for bringing a child into the world.
You don't owe your mother your life, your mental health, your future or your livelihood. You owe it to yourself to prepare for your OWN retirement.
Set a date. Tell your mom that you will be returning home. She is welcome to stay where she is and hire home care or allow you to find her a facility near where you love. Forced choice. No more discussion.
If she wails, leave the room. Don't entertain her misery. It's bad for her mental health to wallow and ruminate like this.
Has her depression been evaluated? Is she getting treatment?
I understand the cajoling and the "help me make YOUR life better". Been there. Done that.
It was only after I told my mom that my brother and I were both putting ourselves in harm's way that she "got" what was going on, and what she needed to do.
There are parents here who are lifelong narcissists. They honestly only care about themselves. My mom was not like that. Your mom doesn't sound like that either.
Just some food for thought.
I've let her know that while my team at work is understanding, not everyone else is. When my boss goes out on maternity leave in March, I'll be in the line of fire with our CMO... who is currently WORKING during her own maternity leave. She doesn't get the whole work/life balance thing, so I don't know how it's going to go. And I'm truthfully nervous that I can't keep up with the workload remotely for that much longer.
She knows it's taking a hard toll on me. I've gained weight, I don't sleep, my hair is falling out. I work out daily, I eat about the same as I always have, take my vitamins, etc. But the stress is not a good look on me.
I agree that the old "I'm trying to help you help yourself" tact isn't working. She did say she knew we had to make big changes, and she knew it was best for both of us yesterday. But then she had a meltdown about dying after she could not her slipper on* and nearly fell getting up from a chair.
*She can barely feel her feet, so she can't tell when her slippers (that have traction) are on or not. Her neuropathy is so bad, but the only cure for that is spinal surgery which she will not have.
Thank you for all of the great suggestions. I realize it's just me reading a bunch of stuff that I could find elsewhere, but I feel less alone knowing others get what I'm experiencing.
Sometimes vascular dementia is an outcome after stroke; at least in my mom, the main symptoms were debilitating anxiety and constant misinterpretation of what other people thought.
Unfortunately, my mom's health took a backseat after my dad's diagnosis. He was the sole source of income (and health insurance), so his appointments and treatments took priority. She always said she'd do it later, when he was better. But then it got to the point where she became physically unable to leave the house (arthritis and neuropathy in all limbs), and then also emotionally became paralyzing.
We went to the doctor a few weeks ago, and the doctor has all but resigned herself to the situation, too. Reading the evaluation she did for the VA aid & attendance forms was heartbreaking.
All of your suggestions have been helpful. They're all things I know in my head, but my heart is codependent and we've all enabled each other's bad habits for years. I feel so sorry for her. I felt sorry for my dad having to care for her while he was struggling with his own life-threatening conditions.
I certainly understand that I don't "owe" them anything, but I have wanted so much to help them. It is hard coming to the true conclusion that nothing I do will change her attitude, which is the biggest issue of them all.
I marvel at people who overcome the most impossible of adversities and thank god for waking up each day... when what my mom prays for at night is to not wake up. Proof that it is all in your attitude and approach to life.
My therapist hasn't been hugely helpful to this point. She lets me talk for an hour, I visit with her therapy dog (which IS a huge comfort), and then she tells me we need to reframe my negative thoughts. In the 6 weeks I've been seeing her, I think I've determined she's not a good fit, but I wanted to give it a fair shot.
Ideally, I'd just like to see my therapist at home who knows this history and was more constructive in his suggestions.
Thank you again for your responses. Very much appreciated.
i understand that you also have ongoing and continual losses, smaller problems that collectively feel like machine gun fire.
You will feel better. Try to slowly conquer your grief, along with the natural unavoidable depression you feel from losing your Dad - by engaging in small acts of kindness to yourself or others. These don’t need to be costly or complicated.
Go to a gym and indulge in a workout, sit in the steam room afterward and enjoy a few hours off. Go to a place of natural beauty - watch animals, a sunset, breathe in some fresh air. Indulge in your favorite ice cream, a spa treatment, buy yourself some soft socks, and just take a break from your Mom and from worrying about the gravity of all these life changes for a brief time. I found that in my darkest hours helping others was my best medicine. Despite my own financial woes, I cooked for shelters, and talked to homeless, and those beaten down by family and life. They helped me also, and we shared and accelerated our collective healing.
Many of us have been on a similar long-term health and family roller coaster. It is especially hard when you were working for so many years to keep your dad alive, working together as a team, and now you feel you have lost and it seems as though there is no fight left to win.
Remember that every day, week, month and year was a victory and you did win. Your prize was more time (the best prize of all). This fight made you strong, resilient, capable, knowledgeable and better. You won! You won everything.
i know from reading what you wrote that you are extremely brave. You flew right into the eye of the hurricane to help others. That says a lot about who you are.
Dont lament about the lack of siblings. They would likely just let you down. With siblings, you wouldn’t be able to make quick decisions, they would fight with you over choices, stuff, schedules... you would be favored because of your commitment and dedication and they would hate you for that, and just stab you in the back to add to all the other wounds you are already suffering from.
Your mom is in the throes of darkness. Give her a big hug and tell her everything will be okay, even if you don’t believe that yourself. Take her somewhere to forget about her troubles. Escape through reading, music, literature. Get yourselves away from yourselves and the suffering you are both feeling. Movies are great for this. You can go somewhere in the dark, live some other problems for a couple hours and escape. Maybe share a laugh or two.
Your tasks and problems seem insurmountable, but chip away at them, one task at a time - they will get smaller.
Remember that this is all two steps forward, one back. Be kind to yourself and gentle and thoughtful. The holidays are even tougher and your loss is fresh. Be patient with yourself and your mom. She will not be in your life forever.
There are many of us what are fighting, or who have fought the same battles.
I promise- everything will get better.
My dad was wheeled into surgery in 2002, shortly after his diagnosis, with less than a 50% chance of coming out of it. 12 hours later, he did. He struggled from that day forward with a lot of ups and downs, but he went back to work, he traveled the world (for work), took me with him when he could, and we got 17 years together that we probably shouldn't have... so yes, we did win.
Thank you for putting that back into perspective. I have said these words to my mom over and over, but seeing them written in the way you did hit me.
I think my mom and I are both struggling with movies, music, books... because most of them resonate with sadness or tragedy a bit too much. And comedies feel ridiculous, often belittling people who are depressed or ill.
Music has always been the great healer for me, but in the form of catharsis. I find comfort in the fact that someone else wrote lyrics that sound as though they were written specifically for me... because they, too, went through something similar. All of this pain is what unites us, the things that make us human. So I feel less alone knowing someone musically gifted worked through their pain by sharing a song with the rest of us.
Thank you for your words of support. They're very much appreciated.
Your therapist maybe should be working through your options with you -- no advice similar to what Barb just posted? AFTER the situation improves for you, THEN you can work through your emotions. If you are being awakened multiple times per night, you are experiencing sleep deprivation, right. And that's a form of torture.
Setting a date to leave, giving her some options, and then leaving is the best thing for both of you.
And note that Medicare does not pay for either assisted living or nursing home (except post hospitalization rehab for limited period of time.) Medicaid does not pay for assisted living, only nursing home for those who have almost no resources. People need to be aware of this and save or plan for their own futures.