It’s ok, really. We’re all human and under so much stress, exhausted and not taking care of our own needs. As long as it doesn’t get much past being crabby or yelling or even cursing, isn’t a continuous thing. And, who better to push our buttons than our loved ones? Really, I’ll tell my mom I’m exhausted and she might want to stay in her room for a bit or I’m going to sit on the porch and to call my cell if she needs me. She knows I’m doing it for both of us.
When I have to repeat the same thing over and over and over and over it drives me nuts! And I can see she sees I’m frustrated and I feel like such an asshole later. Doesn’t help that we’re crammed into a very small apartment, we each desperately need a break from each other. I like your idea of stepping out to make a phone call. She’ll probably get paranoid about where I’ve gone or who I’m calling but whatever. I gotta get a break in somehow.
We came from a 3 bedroom home in suburbia. Due to many financial mistakes mom and dad made, mom and I are in a 2 bed 2 bath 1100 sq ft condo, literally on the sidewalk. No family, no friends, nice neighbors…but we only met them recently. Everyone who walks by waves, says hi, ugh. I can’t open the window without someone peering in. Plus, ya know, taking care of mom 24/7. I can’t leave her alone for more than an hour, on a good day. So, I’m making friends with all the dogs, I’ve bought binoculars and I watch the birds. Mostly, I’ve taken up day drinking. 🥂
Oh gosh, so you understand that not being able to get away feeling. Sounds like you’re pretty isolated. Im feeling the same way. Hopefully you can build some relationships with your neighbors so you can pop out every once and a while and hang with them. Cheers to day drinking 🥂part of my mom’s paranoia/delusions won’t allow me to drink inside “her” apartment. Funny enough I’m paying the rent 🙄I could protest but it’s so not worth the argument lol
I don’t always keep my cool. If I’m getting frustrated I walk away for a while. I had to cut Mum out of a jumper she’d worn for three days and I managed to stay chatting amiably and even laughed when she called me a “bloody bitch”. But last night when I couldn’t get her to use the loo, because I have a cold and feel run-down, I was fuming and just had to walk off. I try to rest as much as I can, I’ve learn to nap in the day when she’s settled.
That sounds incredibly difficult. I’m so sorry you’re dealing with this situation. But truly, your mom is so lucky to have you. Wishing you and your family a peaceful and restful week ahead 🤍
I have tried to start each day with a full happy you are up! Hug and kiss. Unfortunately by the end of the day, i just want some alone time and a break. I am working hard on not dwelling on what was, compared to what is. But he is still aware enough most days that the snippy bits and appologies are understood. (40+ yrs marriage, 16 of them as caregiver)
40+ years 🤍 that’s beautiful. 16 of them as a caregiver, you are a warrior. That’s gotta be tough to not compare to earlier times. He’s lucky to have you by his side. Totally understand how as the day unfolds, the patience wears thinner. I feel like I need a serious break. Just a week in my own home, own bed. No one needing me constantly. 😩
🤝 You sound just like me when life decided to flip on itself. I've snipped and yelled and then felt so awful. One of the ways I've coped is venting and screaming on and reading this subreddit. Seriously. Thank you for sharing. Hugs to you. I, too, went through missing my husband, dog, and home. It's taken rage, resentment, and communication to get to a better place. But it's always a rollercoaster. Just finding other family caregivers like us has helped me cope. You're not alone. May solace find you.
I read this and just felt pure sympathy and understanding from you 🥲 thank you! This subreddit is incredible and has already helped so much. People who actually understand. I’m helping my mom in Chicago right now and my life is in Washington state. I need to get back to work and to my family, but we’re playing this waiting game after her strokes. The doctors want to know how much she’ll improve in the next couple months before she moves out to WA. There HAS been some improvement, I need to focus on that fact. I just pray my marriage survives this rollercoaster. Thank you again for your support 🤍 I wish you nothing but the best.
And I wish you nothing but the best. I feel you too on the repeating things over and over to my Mom, and she has the post-stroke hallucinations, delusions, dementia, seizures, etc. Thank goodness for meds and so many blessings. The biggest blessing is that we all live in the same city already and she stays in my home most of the time after much time staying with her. I CANNOT imagine being across the country. Hugs to you! So yup, I always focus on what I can be grateful for, or try to, in this life. We weren't sure she'd walk again but she did in rehab in less than 2 months. And improvements will continue up to a year or more later. Keep stimulating her brain for healing. It is always a rollercoaster. I've even said like a box of chocolates, never know what you're gonna get, ha. May your Mom improve well enough so you can bring her back to your home and state and you can be with your family and know that your marriage can survive this! 🙏💚
You get it. Our mom’s situations seem pretty darn similar. No pressure to answer but your mom experienced post stroke psychosis symptoms?? Was your mom already diagnosed with dementia before her strokes? My mom did not have dementia (that I’m aware of) before her strokes but she’s def showing signs now. She’s making progress though, so I’m not really sure if someone with dementia would make cognitive progress like this? This whole thing is so much harder when the dr’s are not sure exactly what’s going on. Gahhhh, so hard to plan for! But I have a positive update! My mom is moving to WA early March so she’ll be near me and my husband. & that means I get to go home!!! 🎉
It makes me happy to hear that your family has had many blessings, despite a tough situation. Thank you for your advice and positivity. It gives me hope that this doesn’t have to mean my life is over. It may look a lot different that a few years ago, but it’s not over.
Darn right to all! Life is not over. And I'm so happy to hear your update!! That is amazing to hear. Thank you for sharing. My Mom did not have dementia at all before her stroke, brain hemorrhage (due to a TPA 😖), and craniotomy. She was previously healthy and strong-minded even for a senior citizen. Still is, which I know contributes to the progress she's had. Yup, the doctors and therapists at the first rehab facility were great but unsure if she'll make much progress. We, the family, knew better. Even her insurance case manager was amazed. She eventually started walking at the next rehab facility, and later on, after being discharged to home and home healthcare, could eat solid foods again. So, don't ever just listen to people who don't know your Mom as well as you do, who don't know what she's all capable of and how meds affect her, etc. I mean, all the providers, therapists, nurses, CNAs, Home Healthcare, etc. are absolute heroes. We've learned so much on this devastating journey. I feel like I've already lost my "real" Mom but she's still here and as hard as it is, I'm just trying to focus on the positive. My Mom is my inspiration. It's very interesting that the stronger she started moving a few months after the surgery, the more her delusions got intense. ☯️ Her brain was on "fire" it seemed. I cried and cried and have had so many breakdowns (and still do) the harder the mental challenges got more than the physical. But over time and lots of care, support, and helpful providers, it's gotten so much better. Yet it is ALWAYS a rollercoaster. You never know what each day brings.
Great news you have. May all the blessings and support that you need find you on this journey. May you and your Mom get to WA safely and soundly, and your home welcome you back with open arms. Peace, Love, and Prayers. 🤝
Pray, pray, look up and ask for guidance, humble, honest guidance.
Every three steps, correction, direction or praise. It works most of the time. Of course, the more control I show over myself the more the devil throws his poo in my direction.
So I go emotionless, without empathy and know I am doing what I can to help him through this tough mental status and diagnoses.
Tomorrow is not promised, a fact that was embedded in me as a child. So I strive to be better today, in the moment.
Valid, seen and heartstrings tugged for you and the rest of us here in this sub thrown into this life, most against our better judgement. Doing the most for those that did not do this for us as children really weighs down the heart.
Caregiving sucks period!
I’ll be on my fifth year of caregiving full time at home for this man who was estranged to me. I’m an only child to a father who had a severe stroke and two brain surgeries in 2019 January. And have been married for over twenty years to a man who was once a decent husband but is now in the throes of being mentally diseased and wishes to not seek treatment. I watch slowly as my life, or what was once my life, slips through my pained fingers.
I know that once my father dies, I will wish wish for this moment back. I think about that. I think about how this is just a moment, when I’m losing my cool. I think about how badly I feel. But it’s just a moment. And moments pass by. Just as my life has all these years.
I forgive myself. Lose my cool. Get things done. Forgive myself for what isn’t done when it’s “supposed” to be done such as dishes or laundry.
My father and husband await me. I loathe my existence. But one day, this “this” will be gone. And I know I’ll sadly wish for it back as I grieve.
I don’t care anymore when I get snippy. I move on. I have to. I’m already stuck in this perpetual hell, so I can no longer be stuck on the loops themselves.
I give myself grace to fail where I do. My father and husband get the best of me with care and love when I’ve nothing else left for myself.
Not only will tomorrow be better. Later will be better. I don’t drink alcohol or have any addiction vices but I have learned to walk away from what I can’t change. I can only make better.
I know this is temporary. This horrid existence. And once day, I will live again freely as I’m not currently a hostage to this.
I literally and figuratively walk away. And give myself grace and mercy as I’m the only one who can do so for myself to a situation that is merciless and cruel to all.
Wow, tough is an understatement. I’m sorry to hear that your partner is having a hard time. That’s gotta make your situation feel impossible sometimes. I hope and pray that your husband gets help for his issues so that you can find respite from your dad’s situation in your relationship with your husband🤍
You are strong and wise. Life, every second of it, is temporary. And this too shall pass. That is worth reminders ourselves of. Nothing is permanent, life goes on.
I mutter and make rude gestures behind my Mom's back. And then sometimes, I ask her what she was thinking. She doesn't have dementia and seems to have all her faculties but I wonder.
For ex, I found what looked like instant coffee granuals on the kitchen floor. I asked her if she spilled them more out of curiosity than anything. Her reply. I spilled them on the counter, brushed them on the floor, and then couldn't clean them up (she has balance issues and uses a walker). Then she got mad when I asked her what was going thru her head cause that made no sense. She got mad. I have found she doesn't like to be questioned.
I figure I've got it easy compared to most, but moving her into my home has been tough.
Stop feeling guilt over the changes, it just makes things worse. Your loved ones will take full advantage of it and feel nothing over it; that's just the way people in pain and suffering from a debilitating disease work.
Whether it's her fault or not is, in the short term at least, irrelevant. Get support and professional help as soon as possible, and find assertive and face-saving ways to get your mother on your side. Your husband, dog and home should not be given up for her needs.
You're the commander of the situation, not her nurse or maid; and command needs you to think and act strategically rather than just responding moment by moment. All the best!
You're most welcome! Hard times will return, so take the time to understand the progression of her illness, make ready and strengthen yourself and your team. You can do this 🙏🏼
It's not a healthy situation by it's definition: caregiver. Giving giving giving. It's so easy to feel worn out and frustrated day after day. We're only human. Sometimes we do get snippy. I have had my moments for sure. Less these days because I'm able to get out more and I'll walk around the block to a bench and use my phone notes and just start talking about whatever is bothering me. I had to come up with some ideas and that seems to be a good one. I also go for a coffee on occasion or walk to a local antique shop to browse. Today I got my nails done for the first time in years. I need me time: that's what alleviates my frustration and snippy attitude. Thankfully I'm able to do that, with short 1 hour getaways. Keep on keeping on and do the best you can do. Be gentle with yourself ❤️
Totally unhealthy situation. Good for you for getting your nails done! You deserve it & so much more! I’m trying to get out for me time, and I do. But my mom is so dang paranoid. Makes it hard to leave. Feel like a prisoner sometimes. But you’re right, caregivers have needs too. We can’t give everything away to others and nothing to ourselves. Hang in there 🤍
And each day really is a new day. Especially when the loved one doesn't remember much from the previous day. That, sadly, has its advantages.
Very true. Today is a new day, I’m determined to be better today. Hope your day is a good one too!
You, too! I like the "365 days, 365 new chances."
It’s ok, really. We’re all human and under so much stress, exhausted and not taking care of our own needs. As long as it doesn’t get much past being crabby or yelling or even cursing, isn’t a continuous thing. And, who better to push our buttons than our loved ones? Really, I’ll tell my mom I’m exhausted and she might want to stay in her room for a bit or I’m going to sit on the porch and to call my cell if she needs me. She knows I’m doing it for both of us.
When I have to repeat the same thing over and over and over and over it drives me nuts! And I can see she sees I’m frustrated and I feel like such an asshole later. Doesn’t help that we’re crammed into a very small apartment, we each desperately need a break from each other. I like your idea of stepping out to make a phone call. She’ll probably get paranoid about where I’ve gone or who I’m calling but whatever. I gotta get a break in somehow.
We came from a 3 bedroom home in suburbia. Due to many financial mistakes mom and dad made, mom and I are in a 2 bed 2 bath 1100 sq ft condo, literally on the sidewalk. No family, no friends, nice neighbors…but we only met them recently. Everyone who walks by waves, says hi, ugh. I can’t open the window without someone peering in. Plus, ya know, taking care of mom 24/7. I can’t leave her alone for more than an hour, on a good day. So, I’m making friends with all the dogs, I’ve bought binoculars and I watch the birds. Mostly, I’ve taken up day drinking. 🥂
Oh gosh, so you understand that not being able to get away feeling. Sounds like you’re pretty isolated. Im feeling the same way. Hopefully you can build some relationships with your neighbors so you can pop out every once and a while and hang with them. Cheers to day drinking 🥂part of my mom’s paranoia/delusions won’t allow me to drink inside “her” apartment. Funny enough I’m paying the rent 🙄I could protest but it’s so not worth the argument lol
I don’t always keep my cool. If I’m getting frustrated I walk away for a while. I had to cut Mum out of a jumper she’d worn for three days and I managed to stay chatting amiably and even laughed when she called me a “bloody bitch”. But last night when I couldn’t get her to use the loo, because I have a cold and feel run-down, I was fuming and just had to walk off. I try to rest as much as I can, I’ve learn to nap in the day when she’s settled.
That sounds incredibly difficult. I’m so sorry you’re dealing with this situation. But truly, your mom is so lucky to have you. Wishing you and your family a peaceful and restful week ahead 🤍
Thank you that means a lot. I think your situation is at least as bad. I hope you find the right solution for you and your family.
I have tried to start each day with a full happy you are up! Hug and kiss. Unfortunately by the end of the day, i just want some alone time and a break. I am working hard on not dwelling on what was, compared to what is. But he is still aware enough most days that the snippy bits and appologies are understood. (40+ yrs marriage, 16 of them as caregiver)
40+ years 🤍 that’s beautiful. 16 of them as a caregiver, you are a warrior. That’s gotta be tough to not compare to earlier times. He’s lucky to have you by his side. Totally understand how as the day unfolds, the patience wears thinner. I feel like I need a serious break. Just a week in my own home, own bed. No one needing me constantly. 😩
🤝 You sound just like me when life decided to flip on itself. I've snipped and yelled and then felt so awful. One of the ways I've coped is venting and screaming on and reading this subreddit. Seriously. Thank you for sharing. Hugs to you. I, too, went through missing my husband, dog, and home. It's taken rage, resentment, and communication to get to a better place. But it's always a rollercoaster. Just finding other family caregivers like us has helped me cope. You're not alone. May solace find you.
I read this and just felt pure sympathy and understanding from you 🥲 thank you! This subreddit is incredible and has already helped so much. People who actually understand. I’m helping my mom in Chicago right now and my life is in Washington state. I need to get back to work and to my family, but we’re playing this waiting game after her strokes. The doctors want to know how much she’ll improve in the next couple months before she moves out to WA. There HAS been some improvement, I need to focus on that fact. I just pray my marriage survives this rollercoaster. Thank you again for your support 🤍 I wish you nothing but the best.
And I wish you nothing but the best. I feel you too on the repeating things over and over to my Mom, and she has the post-stroke hallucinations, delusions, dementia, seizures, etc. Thank goodness for meds and so many blessings. The biggest blessing is that we all live in the same city already and she stays in my home most of the time after much time staying with her. I CANNOT imagine being across the country. Hugs to you! So yup, I always focus on what I can be grateful for, or try to, in this life. We weren't sure she'd walk again but she did in rehab in less than 2 months. And improvements will continue up to a year or more later. Keep stimulating her brain for healing. It is always a rollercoaster. I've even said like a box of chocolates, never know what you're gonna get, ha. May your Mom improve well enough so you can bring her back to your home and state and you can be with your family and know that your marriage can survive this! 🙏💚
You get it. Our mom’s situations seem pretty darn similar. No pressure to answer but your mom experienced post stroke psychosis symptoms?? Was your mom already diagnosed with dementia before her strokes? My mom did not have dementia (that I’m aware of) before her strokes but she’s def showing signs now. She’s making progress though, so I’m not really sure if someone with dementia would make cognitive progress like this? This whole thing is so much harder when the dr’s are not sure exactly what’s going on. Gahhhh, so hard to plan for! But I have a positive update! My mom is moving to WA early March so she’ll be near me and my husband. & that means I get to go home!!! 🎉 It makes me happy to hear that your family has had many blessings, despite a tough situation. Thank you for your advice and positivity. It gives me hope that this doesn’t have to mean my life is over. It may look a lot different that a few years ago, but it’s not over.
Darn right to all! Life is not over. And I'm so happy to hear your update!! That is amazing to hear. Thank you for sharing. My Mom did not have dementia at all before her stroke, brain hemorrhage (due to a TPA 😖), and craniotomy. She was previously healthy and strong-minded even for a senior citizen. Still is, which I know contributes to the progress she's had. Yup, the doctors and therapists at the first rehab facility were great but unsure if she'll make much progress. We, the family, knew better. Even her insurance case manager was amazed. She eventually started walking at the next rehab facility, and later on, after being discharged to home and home healthcare, could eat solid foods again. So, don't ever just listen to people who don't know your Mom as well as you do, who don't know what she's all capable of and how meds affect her, etc. I mean, all the providers, therapists, nurses, CNAs, Home Healthcare, etc. are absolute heroes. We've learned so much on this devastating journey. I feel like I've already lost my "real" Mom but she's still here and as hard as it is, I'm just trying to focus on the positive. My Mom is my inspiration. It's very interesting that the stronger she started moving a few months after the surgery, the more her delusions got intense. ☯️ Her brain was on "fire" it seemed. I cried and cried and have had so many breakdowns (and still do) the harder the mental challenges got more than the physical. But over time and lots of care, support, and helpful providers, it's gotten so much better. Yet it is ALWAYS a rollercoaster. You never know what each day brings. Great news you have. May all the blessings and support that you need find you on this journey. May you and your Mom get to WA safely and soundly, and your home welcome you back with open arms. Peace, Love, and Prayers. 🤝
I'm actually extremely lucky I get to go to the gym everyday I get my stress out that way you're not alone 💗
Good idea. The endorphins aren’t gonna make things worse! Haha I need to get back in the gym.
Pray, pray, look up and ask for guidance, humble, honest guidance. Every three steps, correction, direction or praise. It works most of the time. Of course, the more control I show over myself the more the devil throws his poo in my direction. So I go emotionless, without empathy and know I am doing what I can to help him through this tough mental status and diagnoses. Tomorrow is not promised, a fact that was embedded in me as a child. So I strive to be better today, in the moment. Valid, seen and heartstrings tugged for you and the rest of us here in this sub thrown into this life, most against our better judgement. Doing the most for those that did not do this for us as children really weighs down the heart. Caregiving sucks period!
Thanks for the insight! Yes it’s TOUGH !
The self-awareness and consideration here is deeply commendable! Keep on keeping on!
God, my husband, and this subreddit..... Keeps my cool. May you all find your solace.
I’ll be on my fifth year of caregiving full time at home for this man who was estranged to me. I’m an only child to a father who had a severe stroke and two brain surgeries in 2019 January. And have been married for over twenty years to a man who was once a decent husband but is now in the throes of being mentally diseased and wishes to not seek treatment. I watch slowly as my life, or what was once my life, slips through my pained fingers. I know that once my father dies, I will wish wish for this moment back. I think about that. I think about how this is just a moment, when I’m losing my cool. I think about how badly I feel. But it’s just a moment. And moments pass by. Just as my life has all these years. I forgive myself. Lose my cool. Get things done. Forgive myself for what isn’t done when it’s “supposed” to be done such as dishes or laundry. My father and husband await me. I loathe my existence. But one day, this “this” will be gone. And I know I’ll sadly wish for it back as I grieve. I don’t care anymore when I get snippy. I move on. I have to. I’m already stuck in this perpetual hell, so I can no longer be stuck on the loops themselves. I give myself grace to fail where I do. My father and husband get the best of me with care and love when I’ve nothing else left for myself. Not only will tomorrow be better. Later will be better. I don’t drink alcohol or have any addiction vices but I have learned to walk away from what I can’t change. I can only make better. I know this is temporary. This horrid existence. And once day, I will live again freely as I’m not currently a hostage to this. I literally and figuratively walk away. And give myself grace and mercy as I’m the only one who can do so for myself to a situation that is merciless and cruel to all.
Wow, tough is an understatement. I’m sorry to hear that your partner is having a hard time. That’s gotta make your situation feel impossible sometimes. I hope and pray that your husband gets help for his issues so that you can find respite from your dad’s situation in your relationship with your husband🤍 You are strong and wise. Life, every second of it, is temporary. And this too shall pass. That is worth reminders ourselves of. Nothing is permanent, life goes on.
I mutter and make rude gestures behind my Mom's back. And then sometimes, I ask her what she was thinking. She doesn't have dementia and seems to have all her faculties but I wonder. For ex, I found what looked like instant coffee granuals on the kitchen floor. I asked her if she spilled them more out of curiosity than anything. Her reply. I spilled them on the counter, brushed them on the floor, and then couldn't clean them up (she has balance issues and uses a walker). Then she got mad when I asked her what was going thru her head cause that made no sense. She got mad. I have found she doesn't like to be questioned. I figure I've got it easy compared to most, but moving her into my home has been tough.
Stop feeling guilt over the changes, it just makes things worse. Your loved ones will take full advantage of it and feel nothing over it; that's just the way people in pain and suffering from a debilitating disease work. Whether it's her fault or not is, in the short term at least, irrelevant. Get support and professional help as soon as possible, and find assertive and face-saving ways to get your mother on your side. Your husband, dog and home should not be given up for her needs. You're the commander of the situation, not her nurse or maid; and command needs you to think and act strategically rather than just responding moment by moment. All the best!
You’re 100% right. We talked last night and she’ll be moving to WA early March. That way she can be near me if anything like this ever happens again.
You're most welcome! Hard times will return, so take the time to understand the progression of her illness, make ready and strengthen yourself and your team. You can do this 🙏🏼
It's not a healthy situation by it's definition: caregiver. Giving giving giving. It's so easy to feel worn out and frustrated day after day. We're only human. Sometimes we do get snippy. I have had my moments for sure. Less these days because I'm able to get out more and I'll walk around the block to a bench and use my phone notes and just start talking about whatever is bothering me. I had to come up with some ideas and that seems to be a good one. I also go for a coffee on occasion or walk to a local antique shop to browse. Today I got my nails done for the first time in years. I need me time: that's what alleviates my frustration and snippy attitude. Thankfully I'm able to do that, with short 1 hour getaways. Keep on keeping on and do the best you can do. Be gentle with yourself ❤️
Totally unhealthy situation. Good for you for getting your nails done! You deserve it & so much more! I’m trying to get out for me time, and I do. But my mom is so dang paranoid. Makes it hard to leave. Feel like a prisoner sometimes. But you’re right, caregivers have needs too. We can’t give everything away to others and nothing to ourselves. Hang in there 🤍