Desperately in need of support and advice. I am completely breaking down since my mother’s major stroke last month. I don’t know what to do!

Amy, what I'm going to say will sound callous to you, but I want to be perfectly honest.

When my mum was in hospital for 5 weeks following her stroke - from a major bleed at the back of her brain - I saw patients in her ward at the excellent Royal Free hospital in London in similar conditions to your mother.

I saw some whose brains were so damaged that the slightest touch was interpreted as pain. It was so sad to witness.
I watched one woman cry out every time her daughter tried to brush her hair or feed her. Like me, she was there every day, trying to do her best. I prayed to all that is good that if my mum had a second stroke that she wouldn't wake up from it. I didn't want her to suffer.

I was off work following spinal surgery during this time, so I didn't need to get extended leave to look after Mum. However, it did impact my recovery; I still don't know if that's why I'm still in pain every day and have nerve damage - because I couldn't do what I'd been instructed by sitting in a car for over 2 hours every day travelling and in a hard chair by a hospital bed.

I now know that my care couldn't change my mum's lack of meaningful recovery. She lacked either the strength or the will to do anything to help herself. Yet, my mum was talking and capable of moving because her brain was affected in a different place to the majority of people who have strokes. I think that your mum, at 20 years older than my mum was, sounds in a worse position.

You know you can't keep going on like this. I'm so sorry, but your mum's condition is such that she will always need skilled nursing care, even if she makes great strides in her recovery. Her brain has had an attack on it, so it's very likely to be damaged and for her to suffer from vascular dementia. It isn't certain, but it is likely.

You cannot throw your own health and life away because of your mum's condition. Who would advocate for her, then?

I'm so sorry, but it's time for you to take a step back. You cannot make everything right for your mum, and you need to live your own life, as well.

Her days will drift together. It's very possible she won't realise that you are only visiting every other day, after work. Then every two days.

If she does realise, she will get used to it. At least you will be visiting. It will give your mum something to look forward to. It will give variety to her days. By being there every day, your mum isn't having that.

You have to trust that the medical/care professionals will do their best for your mum. It won't be perfect, let's be honest, but nothing ever is.

I'm so sorry for what you and your mum are going through, but you need to reclaim your life, otherwise you will burn out and be so ill that you won't be any good to anyone, neither yourself nor your mum.

Try and get counselling and definitely ask for antidepressants. Anti anxiety tablets can have many side effects. Ask your doctor what's best.

Take care.

OP hasn’t responded or returned, we can only wish Amy the best

Let’s start with a virtual hug {}. I was where you are a little over a year ago. My mother had a major stroke 10 years ago and came away with physical limitations that had been increasing. 18 months ago she began having lacunar strokes and then had pneumonia. I understand how difficult it is when they can’t speak for themselves. In mom’s case these types of strokes cause cognitive issues so even if she could communicate she wasn’t capable of making decisions or good judgements. I felt like I had to be there 24/7. Having a little more than average medical knowledge and experience probably made me more anxious.

I was able to bring her home, I moved in and darn near killed myself with stress. She’s currently receiving hospice care at home and I’m much healthier and happier. It was a struggle but here’s what I did to help US.
*I say my psychiatrist & got meds.

*I saw a therapist through tele-health because there were none available in our rural area and I couldn’t leave for several hours of time at first. Helping me helped her.

*I applied for every kind of assistance I could find.

*When hospice care was suggested because she wouldn’t fully participate in treatment I accepted every bit of help available.

*I realized I couldn’t control everything. Caring for her at home for over a year now has confirmed that I’m not perfect, neither are professionals. Things upset the schedule. Sometimes it’s me, sometimes it’s her, sometimes it’s life.

*I came to understand that she’s not always going to be happy with her care whether it’s provided by me or professionals so I pick my battles but I make sure I fully understand the issues and circumstances.

*I offer my assistance to facility staff and then get out of their way. I mention any known quirks or preferences to them before they start so if things need to be done differently than SOP those are proactive adjustments rather than “corrections”. At the same time I make sure that mine and mom’s expectations are within reasonable boundaries for their workload and her needs (not wants).

*I chose to trade off regular weekly respite volunteers for a possible 5 night a month respite facility stay. This met my needs better. I usually drive her the 1.5 hrs there and back. This last visit circumstances led me to request they transfer her back in an ambulance. If you’ve ever been transported you know that’s not the most fun or comfortable way to travel. It wasn’t ideal, she didn’t like it but it made my life 300% easier that week.

*I use personal (mine & hers) funds to pay extra help when I can find it even though we both live on a limited (SS & SSDI) income. Sometimes 4 hours a week to get a haircut or go to the dr. or just having someone else clean the bathroom is a relief.

*We live in a rural area where it’s hard to even find help so at the advice of the Hospice Social Worker I invested (<$100) in a good nanny-cam with live feed, recording to cloud and 2 way audio. A nanny-cam should be allowed in the SNL. This would allow you to get notifications of interactions, you can see event or non—stop recordings and in our case mom and I can talk through it like an intercom. It now goes to the respite facility with her when she goes. I can see/hear what happens/is happening when other care providers are with her. I can see/hear/understand both sides of every circumstance/event/conversation because she’s not the most reliable reporter.

*I learned to separate urgent from not, and wants from needs. I now prioritize both our needs and set boundaries that keep her from acting entitled and me from being resentful and angry. That sometimes means bringing in an objective 3rd party to mediate.
*I had to learn to ask people to help me. In some cases I’ve been surprised and eternally grateful for help I asked for and received even when I thought the answer would be no.

Help yourself help her. Get help for you!
Best wishes!

I'm so sorry for all you're going through, but have a few questions? How is your mother reacting to her care from staff, your visits, etc. Does she eat better for you vs for the aides? How are her spirits in general? Does she want to sleep a lot? Is your mother still cognitively strong but just can't speak, and if so, can she write down her thoughts? Is there any prognosis for her physical improvement?

Answers to these questions should guide you on your actions toward finding less stress. It's possible she's as comfortable as her physical health allows and she also wants as little stress as possible and doesn't mind her assistance from her aides. Perhaps your fretting over her care is in actuality making her own adjustments to her condition harder. Maybe backing off a bit from staying long hours or making daily visits could serve as a test for you both to realize your real needs. Don't think for a minute you're not appreciated by your mother... she's tired and in her own way probably nurturing herself to survive this ordeal. Find out how you can help each other through this difficult time.

Been there myself. Please know that your loving presence is giving your mother the incentive and the will to push through this most difficult time in her life and yours. There is just no better path to healing than a loved ones presence. Helping your mother with practical care like eating and drinking can give you a sense of control, which may help alleviate some of your anxiety and mental anguish.
The facilities that my loved ones have been in and out of usually welcome family members and the care that they give their loved ones. They know that this is crucial to a patients well being.

It is important however, to step away at times and take care of yourself. This will bring you a much needed respite, mental stability, and a sense of peace. It will also be good for your mother in her current state. Being your mother's advocate in her facility will also give you a sense of purpose and control which can help with anxiety and fear levels.

Take it one day at a time.

First, I want to acknowledge the incredible love and dedication you have for your mother. It’s a testament to your strength and compassion that you’ve been there for her through these unimaginably difficult weeks. That said, it’s also clear you’re carrying a level of pain and exhaustion that no one can shoulder alone—and you shouldn’t have to. Caregiving, particularly in a situation like this, can absolutely drain every part of who we are. What you’re feeling—burnout, panic, insomnia, and loss of self—is the body’s way of saying it needs care too, just as much as your mom does.

You cannot pour from an empty cup. We try to do it all but we can’t. Giving our all and doing it all are very different. As devastating as it feels to “step away” even momentarily, your ability to be present and make sound decisions for your mother is directly impacted by how well you’re caring for yourself. Let’s go through a few small, manageable steps to start prioritizing your own well-being, without compromising your mother’s care—because both are essential.

1. Create Micro-Moments of Respite
Even if you can't imagine taking hours or a day for yourself right now, can you start with five to ten minutes? This could be stepping outside the SNF for a walk around the block, sitting in silence with your breath, or even listening to music that soothes your anxiety. These micro-moments can begin to regulate your overwhelmed nervous system and give you just enough grounding to step back into the intense caregiving role.

2. Build a "Care Safety Net"
It sounds like trust is a major challenge right now, especially with the SNF. Consider sitting with the staff or the director to have an open, honest conversation about your observations, her care plan, and ways they can provide updates regularly when you’re not there. Many facilities have social workers or patient advocates who can also bridge this gap. Imagine a process where you’re still in control as her advocate, but also free to take moments for yourself.
Additionally, is there someone—anyone—in your circle—even a friend, a neighbor, or a support group member—who could sit with her for an hour or two so you can decompress? Delegating doesn’t mean you’re failing; it means you believe her care deserves a team effort.

3. Consider Support Groups for YOU
While it may seem like one more thing to do, connecting with others who truly understand what you’re going through can provide immediate emotional relief. AgingCare itself has forums and connections specifically for caregivers who are feeling burned out. Many local communities have both in-person and virtual caregiver support groups as well. Sharing your experience and even just hearing others can remind you that you’re not alone.

4. Reconnect With Yourself
You mentioned that your life feels like it’s crumbling and you’ve lost all sense of self. Know that even a single intentional action can begin to shift this. Start small: What’s one thing that used to bring you joy—something as simple as a favorite book, art, or being outdoors? Could you dedicate just 10 minutes a day to reconnecting with that part of you? You do not have to rebuild all at once, but small, daily actions remind your heart who you are beyond the role of caregiver.

5. Talk to a Professional
When the weight of it all feels like too much—which is so valid—please don’t hesitate to reach out to a therapist or counselor. This is a season of life where even the strongest people need professional tools to manage the emotional and physical toll. Caregiving often unearths past grief, guilt, and trauma, and having an expert listen to and guide you through that is not a weakness; it’s courage.

Final Thought:
I hope this gives you a few helpful starting points to relieve some of your burden. Please know that creating space for your well-being is not selfish—it’s the best way to sustain both yourself and the advocacy your mother needs from you.

Sending you strength.

You're not alone.

Hi... go to your states government website and sign up for help..here in CA it's https://aging.ca.gov and sign up for yourself to get paid and also get support..you can also have friends and family start a phone tree for help or to sign up to be trained as a government worker and hire whomever u choose. Mental health for you is important.. ask for help before u implode..that means friends and family and accepting the help and fact it's bigger then yourself. Exercise and daily outing even if outside for 15 min in sun can help or a mental health free hotline..hope this helps...been there...done that

What AlvaDeer said below is exactly the advice you need. It is best for you to stay calm, take care of yourself, and not obsess over your Mom and get in the way.

The Waiting Game is not easy. The good thing is your Mom is in a safe place, being cared for by a team of professionals. Of course you are devastated and upset emotionally. But you must get a grip, see a Doctor about your anxiety, or you are no help to your Mom. Stop all the negative thinking that if you aren't there, your Mom will wither away. Your Mom can read you like a book, trust me.

Go read what Alva told you. Pay close attention. Get a notebook out and write down key things you need to do.

I'm sending some of my incredible strength your way...Trust me, I'm known for my intense inner strength for many reasons. Walk outside and look up at the stars in the night sky...and take some deep breaths and inhale it! It's 12:20am in California on Sunday night, and I just went outside to send it to you!

I really understand this..My mom’s dementia diagnosis at 85 did this to me! 6 years later and 2 years of twice a month counseling and I am back to being me. We did not cause this problem nor can we fix it. Us falling apart does not help the situation. Our moms would be horrified to see us falling apart. My counselor has taught me to schedule weekly visits and start being social again. With reluctance I did that..I went from 5 days a week with mom to 3 days a week for 2 hrs each day. I befriended the cna’s and now trust them. Nursing home life is NOT perfect but nor would we be. PLEASE look for counseling..my insurance has a $25 co-pay..very affordable. It saved my life! Good Luck

I surely know exactly the way you are feeling. I was so stressed out all the time, anxious, sad, worried, and could not sleep much at all. I was taking care of my precious Dad, and I worried about everything around the clock. He passed away in 2023. It is so very hard to lose a beloved parent. I miss my parents so much!!! All I can say, is that none of us live forever, and unfortunately, your beloved Mom is in the sunset time of her life. Just do your very best for her, and pray for her to heal. You may or may not get more time with her, but the lifetime of wonderful memories will last forever. I know it is so hard to trust people these days, because so many people just don’t care, or it is just a job to them. Just another elderly patient. They often just don’t have a clue about how precious your Mom is to you. Just try to balance caring for her and yourself.
❤️

Your mother is being cared for. Use this time to get much needed help for yourself. Start with an appointment with a medical doctor. I would also suggest an appointment with a psychiatrist to help you with coping an regaining "balance" in your life.

I'm sorry for your burnout, and neither of us can do anything to help your sweet mom, so let's work on you.

It's clear that you love her very much. She's lucky to have such an attentive daughter. BUT. You don't have to be there every minute, every single day. That does little to help her and a lot to hurt you. You indicated that one of your problems is that you don't trust anyone with her care. This is one of the places where you're skidding off the road!

Remind yourself that her carers and medical team are trained professionals. They know what they are doing. That's what they are paid to do. A medical team has seen all of this before. You have not. That's why you're scared. Plus you're tired. Of course the nurses and aides may come across as blase' or methodical to you, but they are most likely following medical protocol and concentrating on doing it right. They don't always have time to plump mom's pillows like you do because they have patients down the hall that they must attend to. They can't sit and hold her hand like you do. You need to get out of the way and let them do their jobs.

Sometimes we don't understand why caregivers are doing what they do, and that gives rise to complaints. You've already had two grievances. Ask yourself if they were necessary. Ask yourself if they really helped your mom in any way.

My husband is in memory care. Recently I arrived for my usual visit, and he wasn't wearing his hearing aid. I found it in its storage box in his room and took it to him, then put it on him. I was going to speak to the DON about it because I felt it inexcusable for the aide not to put it on him when she dressed him. He has profound hearing loss. Before I got around to it, his aide showed me a photo of him in his room that morning. He was trying to eat his hearing aid. She explained that she'd taken it away from him and had been waiting to put it on after he got past the loop he was in that morning, which was to put everything in his mouth. If he'd eaten his hearing aid, that could have been a more serious issue than not being able to hear at breakfast.

Moral of story: Long experience informs mom's medical team. They're not trying to hurt your mom. You don't have to watch them every minute. You are not an all-powerful deity who can protect your mother from everything bad. Back off, go for a walk, and show up to plump mom's pillows once in a while. She would want you to stay healthy, and I hope you do.

First, I would give you a huge hug. Next, I will tell you that my husband (age 57) also suffered a hemorrhagic stroke. Most of what you are witnessing is traumatizing to you. Your mother is in a state where she will not remember any of what she is experiencing. Try to make the best decisions that you can with the information you have. There will be times you just want to scream at the medical staff, but try to relieve your stress through another outlet such as a friend or therapist. Talking really helps although it won't feel like it. Pray about everything and remember God is in control, not you. Relax, He knows what He is doing. Take this time to draw closer to Him and He will help you through these very hard times. My prayers are with you.

AmyA824: It is imperative that you seek respite even in small amounts, else your health worsens.

You poor thing. Your mom is in care and you are a basket case. YOU NEED THERAPY for yourself in order to get a brighter picture of where your life is going. Start with your CT link https://namict.org/ or call (860)882-0236 or (860)882-0236 You fall into the New Haven location. This is a free service that helps people with anxiety and depression. There is hope. Alva is correct. I used to work in a neuro ICU in Hartford and Alva is a nurse. You will need to support mom who might not ever come home. Visit her but you do not need to be there every day.

You have the right to have your mom moved to a new facility.

You will have to find the facility and find out what they require for a transfer.

Then, in my experience, you need to stand over the employee, at the current facility, tasked with getting the paperwork to the new facility, or it will not happen

Once this is done, the new facility will send whatever medical transport is required to move mom.

Great big warm hug! This is a challenging time as everything will forever be different. Finding our balance in the new normal takes much effort. Prayers you soon find yours.

Caregivers tend to go on automatic Pilot - That Means were burning Both Candles at both ends . Sounds Like you're Having some Panic attacks and should speak with your Doctor about getting you a therapist . There is a support group coming up at Upaya Zen Center for caregivers That Meets twice this month and twice next Month - they ask for a donation or it is free . There is another One Called GRACE I Took a few times . Upaya does a lot with death and dying and caregivers . Sometimes we have to accept we can not control another persons fate . You're alone and have no one to share this with . It is a very hard situation to be In . Visit when you can , bring Flowers . I would bring My Mother an orchid Plant from Trader Joes . Go for a walk In the Park or beach . Try and do healthy things fo yourself right Now - gardening , Baking bread and find the beauty in Life . Exercise helps too - riding a Bike or swimming . Take some deep breaths . Maybe there is a support group You Can find in your neighborhood . Go to the senior center they may Know Of One.

Unfortunately, what you are going is normal, yet that doesn't mean your life needs to continue like this. The stroke your Mom has suffered is devastating, moreso for you than it is for her. This is a person you love, and seeing her in this condition is heart breaking. You are headed for a complete breakdown if you don't take a closer look at your priorities. While it's understandable your wanting to be with your Mom, it's important to acknowledge your own needs. If you lose everything, including your self worth, what will left when your Mom is gone? Don't wait until that time to try and pick up all the pieces.

After a month, most of any improvement from stroke was likely to manifest. I assume she had the 21 days Medicare pays for and it failed. She is not in her current state because she is in an snf.

Amy hi
first of all this is normal ok
anyone doing S much as you would get burn out - probably a lot sooner than you so feel proud.
onto care
you can no longer go due to the road of you don’t trust anyone
you have to and can watch to see all ok
you must get care help
Speak to your mothers doctor and ask them further advice where you can get help
if funds allow seek legal advice
you must relinquish trying to control
no man’s an island - we are reliant on others
do asap as you really need a rest now
in this country they have charities that can help with advice and provide advice fir you also
don’t under estimate the enormity of care
its gi-normous
i get care help at home with my father
the truth is I do monitor them and how they interact with my father
you can still do that from a care home or anywhere else
you need rest and a break
have you any distant relatives or anyone who can help with a few hours even baby sitting while you just rest
of funds allow get someone in before your health turns serious ( it is but could get worse)
best to you

She in a care facility so you do not have to be there every hour or even evon their own schedule if they happen at all. Your being there on not will not change that. Your "panic" is that you want your mother not to be in that condition. Try to reset your expectations. Your mother is in whatever condition she is in. Accept her "as she is." Relate to her in whatever way is meaningful and supportive for her.
Staff at the SNF will not be with her every minute, nor do they need to be. Be mindful that she is being kept safe and clean and that significant medical issues are being addressed. Visit when you are composed and observe that basic needs are met. When you leave, give her a kiss and tell her you'll see her soon. When you are too agitated and upset, don't visit just then.

AlvaDeer, truly amazing angel sent to us all ♥️ xx

Please AmyA, listen to AlvaDeer. The best Clinical Excellence you will find. The most sensible, loyal, kind, logical, trust-worthy and empathetically intelligent angel, ALWAYS. Truthful always, straight talking to ensure you are guided correctly, all with heartfelt guidance, the most sincere angel ever xx

Take care, and please be guided by AlvaDeer 💗

Amy, it sounds like you have a close relationship with a caring mother. Would she want you suffering this way? No, she would not. Would she especially want you suffering this way because of her? No, she especially would not.

Please get some therapy as soon as you can, and also some anti-anxiety and anti-depressant medications. You can start with low doses and increase if needed. But you really can't go on this way.

I know it's upsetting if you feel like the care is inadequate. Of course speak up if it's something serious. But if you nit-pick and try to micromanage the staff, they will tend to shut you out for fear of your criticism. You want the staff to be your allies in caring for your mother. Try to appreciate what hard work they're doing.

Please, please, please, take care of yourself in the short-term, and set yourself up for emotional and physical health for the long term. It is what your mother wants for you, even if she can't communicate well now.

My mother had a hemorrhagic stroke at a much younger age than your mother. She also could do nothing for herself and lost speech, having to be a two person assist for every move, and living in a nursing home. It was and is the cruelest thing I’ve ever witnessed. However, knowing my mother loved me, as I’m betting your mother loves you, I well knew my mother wouldn’t want me trashing my life and wellbeing over her rotten circumstances. No way your mother wants this for you. Seeing the devastation on your face and the sadness in your eyes isn’t what she needs, and you being on the edge of a breakdown certainly isn’t helping either of you. Seek counseling if you can’t change this behavior on your own. I went to every visit internally hating it, but outwardly I smiled and always told mom a new joke. Anything to lighten the atmosphere and mood. I took her outside at every opportunity. Stop being there every second as well, mom has a lot to adjust to, and honestly you’re in the way of that happening. Let go of the fantasy of controlling all aspects of her care. My mom was blessed with good care, but of course there were mistakes and things we wished were better. It’s the nature of the medical field (well, any field really) Make peace with going after only the big issues. Go back to your life and get some balance, it’s unrealistic and unhealthy to solely focus on one thing. Your mother is blessed to have you looking out for her. Now look out for you. I wish you peace

You are most certainly heading for "a complete breakdown" if you continue at the pace you're going now, and you are doing far more damage than good to not only your physical health but your mental health as well. And then what good will you be to your mom, when you end up in either the hospital or the psych ward?
I know that your mom would NEVER want you giving up your life for hers, so you now need to regroup and start taking some much needed breaks to do things that bring you joy, far away from the SNF.
You deserve that much don't you think? And I'm sure your mom would agree.
Your mom has had her life and again I know that she would NEVER want you giving up your life for hers, so I hope that you'll talk to your doctor or therapist to help you sort out your unrealistic expectations of having to be with your mom "every waking moment" as that is doing way more damage to you than good.
Only you can make the changes necessary to get your life back on some sort of "normal" track, and start making yourself a priority, as you matter too in this situation. And I hope that you will do just that.

To be brutally honest with you, in your current state, your "being there every moment" may be devastating to your helpless mother, who has sustained a terrible stroke. So let's try to separate out your own current "condition" and well-being from mom's. Let's start with her.

1. Your mom at 82 has had a devastating stroke. She is one month in and that is the time at which there is the most "turn-around" or "healing" --the time in which things that will most easily return in terms of movement, mobility and eating, etc. will be back to "normal". After one month recovery becomes long term, and there may in fact not be any recovery to any extent. You can't know that yet.
2. You mother is currently "in care". She is in SNF meaning she has and she needs skilled nursing care. There is no perfection in care. Accept that. Know what hills you will be willing to die on, because mole hills will wear your energy down to nothing if you choose to battle on each one.
3. What is crucial now for you is to know what "next steps" are. Start with prognosis. There will now be care conferences where you can call in social worker, MD, Discharge planners to discuss mom's immediate future. Important here is what you MOTHER would want. But "REALISTIC" goals and treatment will take precedence. Most elders would not want to do heroic measures now. Some may request palliative care and hospice. Some have a "will to work" hard. You need to get POA or next of kin in place to manage mom's own wishes and her care with the team moving forward a step at a time in her future plan of care. Having the solidity of A) Where are we now and B) where are we going will help your flailing mind.
4. Mom will likely go from SNF to either Rehab or to Nursing Home care if it is felt she won't progress now in rehab. Much of future work will depend on which; you can't know that TODAY.

So basically it is now a game of wait and see. One day at a time. The SERENITY PRAYER like a mantra (this atheist BELIEVES IN IT).
If mom can't progress then placement and care and the plan for heroic measures or not need to be put in place.
That is the best we can do right now as regards mom. And if you are distraught, keep that AWAY FROM HER. She doesn't have the strength to be a comforting mommy right now.

Which brings us to YOU.
I wish I could transfer my 82 year old bones near to you so you had my scrawny should to lean on for a second.
You should enlist all the support you can from Social Workers and from planning meetings with staff. Ask about their expectations/best guesses for what the future needs will be for mom.
Go to Facebook and sign on to Stroke Survivor Caregivers or other group support to at least have someone to talk to. Ask for support groups. Let them know you are flailing and feeling helpless.
See your own MD. Get some anti anxiety medications (LIGHT) and use sparingly, but when needed.

What is OUT OF THE QUESTION is any plan in taking your mother home. Period. End of thought. She's in no condition to be cared for by one person. You cannot move from darling daughter to caregiver. It could literally kill you. And that would leave mom truly alone.
I would suggest you see a good cognitive therapist. I don't know your history with any mental distress, depression, anxiety disorder. But you clearly need to speak with someone who can help you slow down enough to approach this one day at a time, because one day at a time is how this is going to happen. You cannot go backward. You cannot go forward.

I am so sorry you feel so in despair, but getting to a therapist is now your emergency I feel. Your mom is being cared for. People will reach out to you a day at a time. What is CRUCIAL here right now is to understand and to have anchored in CEMENT that you will under no circumstances make any attempt at caring for your mother in home. THAT CANNOT/MUST no happen. You, yourself, are in no wise well enough to attempt such a thing.