82 year old mom had a major stroke a month ago and she is now in a SNF. She cannot speak and her entire left side is totally impaired. I have been with her every single day throughout 2 hospital stays and now in the SNF.
I’m completely burnt out and have let every other aspect of my life crumble. I’m in a complete state of panic every minute and suffer from constant anxiety attacks, insomnia, depression, and cannot even eat. I feel like I need to be with her every waking moment and seeing my beloved mother in that condition is devastating. I have no support and no family and I feel as though I’m headed for a complete breakdown.
I don’t trust anyone with her care, and she can’t communicate to be able to tell me if she’s being ignored. I’m not happy with the care she’s receiving and had to make two grievances so far. I feel like if I’m not present she will be left to just whither away.
My life is no longer my own and I’ve lost all sense of self — I’m on autopilot. I need advice and support terribly.
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.
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.
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.
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 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.
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.
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!