That’s me, 24/7…. He has Alzheimer’s full care, wife wheelchair bound full care. I take care of me first or at least I try to, however even trying to take care of me is filled with thoughts of caring for them
@tiffanysteen1845 My parent won't entertain going into respite care, they don't think it necessary for me to have a break from them. Basically my life has been completely taken over by them.....I am living half a life.
I so needed that tonight. Like many of you I share your struggle. I'm so exhausted and depressed after 16 years of caregiving for a stroke patient. Tonight, was a good way to do something for myself by giving myself the time to watch this video. Best wishes all caregivers.
Wow, this is spot on. I'm 53 and I am married with a 10 year old boy with autism. I work from home full time and take care of my 84 year old father who has dementia. I have 4 siblings and none of them will help me. I asked a sibling that lives across the country if she could come for a week to take care of dad so we could go on a family vacation to the beach, and she won't do it, even with help with trip money etc. She initially agreed to do it and when we put the money down for the deposit for the trip, she backed out right after. I'm getting a little bit of help from the VA with things, but since Dad's illness and disability is not service connected, it takes a lot of the resources away from me. I tried to let my father live on his own initially because I did not know he wasn't taking his meds, he was not showering regularly, and he was living in squalor, and getting lost driving around (i was getting calls almost daily from people and police asking me if I was related to him), and the final straw was when he showed up here in 17 degree weather wearing nothing but a t-shirt and just saying 'c c c cold" my wife moved him in with us, and we were able to setup a 'room' for him (put a bed and some furniture in the dining room) and he's been here for almost a year. I make and feed him all his meals and meds on time and take him to all of his doctor appointments, and not one time has anybody showed up here to even visit him. We have a cousin that has offered to take him in for our vacation and for a long weekend trip we wanted to do with my wife's family, but other than that, I have no help and it is so frustrating to me, because I feel like I can't go and do anything because there's nobody to help other than my neighbors will come and give him lunch if we want to go out for the day. It's VERY hard to do all of this and care for an autistic child and do homework, etc with him too everyday. I wish the VA would help more. We can't afford a nursing home for him and most of his Social Security is going to groceries and things to care for him and saving for final expenses because he cashed in his life insurance to go overseas to be with a girl that was taking advantage of him for money. Please remember me in your prayers. People talk a good game, but when the rubber meets the road.... crickets......
God bless you, I truly respect and admire you. It is damn hard, and I hope you find resources and a new, sustainable arrangement for caregiving as soon as possible.
Yes, I've heard crickets myself! Just taking care of your child who has autism is full time job. Maybe objective friend or family can get phone meeting non negotiable help, siblings to do their part, you've done yours. I work with disabled family member for 2 years alone with Jesus help, provision and guidance, it is wonderful when people see others in need and step in❤
I totally hear you. Am an only child. Husband stays busy with his business or his ‘working out’ and only came in after his mother had passed cause he was driving home from college and the last two weeks of his fathers life after his step mother had done it. His help is buying my mom things like AirPods for her bad hearing. I’m at my moms seven days a week cause she insists at 95 living in my parents townhouse because her mother lived with my parents. Luckily it’s only ten minutes away. But I too am worn out packing up food, her washed clothes and her daily meds to bring her daily thru Mid-west very changeable weather. I’m 65 and too had had a stroke 23 years ago from a chiropractor . So I have to try to stay aware of my own safety so I’m there for her. My kids both live an hour away. They are great at telling me how I should do it differently. I just know all of us caregivers do the better job than any nursing home.
EXCELLENT MESSAGE! I took care of my mom for eight years; she died in August 2021. I had SO MUCH to learn just by keeping faith and going through all the challenges of caring for her. I didn't get much guidance on how she was changing or how to adapt to her. I just kept going, but like the speaker says, I learned how to take care of myself in little ways. However, I wish that I had joined a caregiver group or been more open about the difficulties of being a caregiver. I didn't talk enough with others about the work of caregiving.
I woke up in the middle of the night thinking she called for me four different times when she didn't. I can never get rest ever. I owe her. She did it for me as a baby.
I feel both of these things! I hear phantom footsteps in the night. It's exhausting. Sometimes I feel so resentful, and then I feel guilty for feeling resentful, because she was always an angel to me as I grew up. I owe her so much. But that doesn't make it easy.
@robotaholic my 46 yr old son has a bell he touches when he needs me. I hear it clear as day and scurry over to his bed, just for him to let me know that he didn't ring me. I get up many times in the middle of the night to the bell, just to find him sounds asleep.
thank you agree with all that was said. I always say to any caregiver I know. You need to take them out of your mind, but always keep them strong in your heart. I am a 24/7 carer for mum, after caring for dad till his passed. In other words don't let them knock you of your mind set, you always need to keep that clear. Caring is like you are driving your car in a fog, you know theres a wall coming but you just have to keep on going. You do this for love. A carer doesn't live, a carer just survives and with Gods help they make it to the end. A stronger person for having the guts to have walk that path! God bless all the CARERS out there.
After I heard Linda’s speech a thought came to my mind That Linda is copy-pasting my experience of caregiving, I am 89 and I lost my wife 3 months back who was then 85.last 31 years I was taking care of my wife who was then 54 and I was 58.She had meningitis and a soft brain stroke. She was then totally dependent on me.last 3 years she was Completely bedridden.She was also suffering from Dementia. I went through all the sufferings which Linda is describing. I wish I had heard her speech long back So that I would have not committed some of those mistakes as a caretaker to my wife,which Linda has described in her very useful speech. Thanks Linda.
Death is mercy for a live in caregiver, at least for me it is when my heart is racing, exhausted, hungry, just plain wiped out. I sometimes say, take me in my sleep lord, peacefully in my sleep, amen. When I wake in the morning I pray, help me today lord….
And she felt all that with a care recipient in assisted living... I’m trying not to be bitter, but that seems like heaven to me. I know her story is supposed to help us connect to her talk... I’m on round 4 now, at 51, and I would like to experience some life without caregiving, but I’ve done the math, and it appears I will be quite old before I am free.
Hi Michelle. I know this is an older comment, but I wanted to ask if you've looked into any respite programs in your city. In my hometown we have hospice programs among others that provide volunteer caregivers for respite. They can't take the place of assisted living programs or in home providers, but they can help you feel less alone with your journey, and provide you a few hours a week to care for and reconnect with yourself. Wishing you the best and hoping you find some support to ease your burden.
I struggle with mental illness and so does my Mother. I've had to be there for Grandmother, Father and now Mother. Its too much. I've been on empty for years.
That’s distressing in and of it’s self. I can say that because I’m going on 11 years of being a caregiver and I’m totally exhausted and being honest bitter about it. But I’m working on my attitude. Thanks for your response I’m not alone
@@prestontingle5014 I hope you can get the help you need (whatever that looks like) to make your life more livable for you - and even go past that and thrive. I had forgotten about this post and never came back (never got notifications that people had posted... or I didn't notice them). Anyway, I wrote that at a particularly low point. I can feel AND REMEMBER the depletion and bitterness coming off of my post. I'm in a much better place now. Due to a combination of factors, some by happenchance and some by difficult choices/design (prompted by the "bottom" I hit about the time I posted), I am no longer struggling under such a burden - and I expect to have minimal caregiving responsibilities going forward. Can't say more, because it involves family-dynamics info, and I post under my own name, but life has very much improved for me, and I hope it will improve for you, soon, as well.
@@joneal8698 Thank you... Respite help was not an option for this situation. I can't really go into it, but there are factors that make respite help not workable - and in my case, while the responsibilities felt overwhelming, it wasn't actually about not being able to be away (in the phase of caregiving reflected above).
This is very helpful. Good tips on getting respite care for self, not just physically but mentally. So often I spent time ruminating on negative future, though unknown but in a way being in that anticipated grief state. Our brain seems to either think of the past or forward thinking. I started practicing mindfulness and pursue spiritual journey. Some heartbreaking decisions have to be made, this is part of the life: live and death.
I hear you. I hope you are finding ways to take care of yourself. Next month is two years that I have been caring for my aunt, and it has been a year since my mom (her sister) sold her house and joined me to share the caregiving tasks. I hope you have help. There are ebbs and flows of emotion. Be kind to yourself. It is a marathon without a definitive end date in most cases. Learn some coping strategies as you get used to the rhythms of this new life.
@@AF-ke9by Your words are timely and perfect. It feels like I am adjusting which gives me some hope. Caregiving seems to just "happen" time becomes so precious and we know we will never be the same. Thank you for your advice and kind words. Forever grateful. 😔🙏🙏
@@chrislim7976 You are welcome. It is important to know and feel you are not alone in this effort. Reaching out online helps when there is nothing else, sometimes. I am grateful to know you are adjusting. Some days make it seem like this will never end. Last night? My aunt actually talked with me for a few minutes, which is rare enough, but she was mostly coherent, which was really nice. How are you?
@@AF-ke9byAgree so much. Friends can listen only so much which is understandable and during a pandemic it is especially lonely. I believe when we need it, things do happen to help us like your aunt reaching out. Thanks for sensing my sadness and I am not alone. What a world. 😔🙏
I'm a Single Mom with 3 kids. I literally have been caring for a small child for 10 years with zero breaks and no support. I literally can't handle any more....I am so tired everyday when I wake up I'm so disappointed that I am not sleeping anymore.
I would go to church and drop them off at the child care during service. Get prayer while you're there. See if anyone at the church is willing to babysit once a week as service to the LORD?.. Are you able to sleep while they're at school?
What about the dayto day cargiver in thetrenches. Bathroom inand out of bed who are alone and none else to orchestrate and try to pay the bills andtryto work to oay the bills at the same time having to help the lovedone to the bathroom while tring to still work. This it stress
Not living with the person you're supposedly caregiving for? Yeah, you're not really caregiving. When you get to go home and have downtime away from the person your caring for, you are living an exponentially easier life than the person that doesn't benefit from a space and life that is their own. When you're hiring someone to facilitate, you have no idea how easy you got it.
Yes, that is true, but she still speaks to all of us who are caregivers. It is harder when you're caregiving 24/7, but I still have some solemn reassurances, soaking in what she said is very helpful for me.❤
How can i go to a sulport group? Say to my lovedone. "Hey your on your own tonight. Ill getyou in bed after i come home from my meeting? This is not possible
Anyone that does it 24/7 needs a medal, not judgement they get from everyone. ❤
That’s me, 24/7…. He has Alzheimer’s full care, wife wheelchair bound full care. I take care of me first or at least I try to, however even trying to take care of me is filled with thoughts of caring for them
And respite care so they can take time for self care
@tiffanysteen1845 My parent won't entertain going into respite care, they don't think it necessary for me to have a break from them. Basically my life has been completely taken over by them.....I am living half a life.
I was the primary caregiver for my Mom for almost 10yrs before she passed Nov 20, 2022 It was the hardest most rewarding thing I’ve ever done!
I so needed that tonight. Like many of you I share your struggle. I'm so exhausted and depressed after 16 years of caregiving for a stroke patient. Tonight, was a good way to do something for myself by giving myself the time to watch this video. Best wishes all caregivers.
Wow, this is spot on. I'm 53 and I am married with a 10 year old boy with autism. I work from home full time and take care of my 84 year old father who has dementia. I have 4 siblings and none of them will help me. I asked a sibling that lives across the country if she could come for a week to take care of dad so we could go on a family vacation to the beach, and she won't do it, even with help with trip money etc. She initially agreed to do it and when we put the money down for the deposit for the trip, she backed out right after. I'm getting a little bit of help from the VA with things, but since Dad's illness and disability is not service connected, it takes a lot of the resources away from me. I tried to let my father live on his own initially because I did not know he wasn't taking his meds, he was not showering regularly, and he was living in squalor, and getting lost driving around (i was getting calls almost daily from people and police asking me if I was related to him), and the final straw was when he showed up here in 17 degree weather wearing nothing but a t-shirt and just saying 'c c c cold" my wife moved him in with us, and we were able to setup a 'room' for him (put a bed and some furniture in the dining room) and he's been here for almost a year. I make and feed him all his meals and meds on time and take him to all of his doctor appointments, and not one time has anybody showed up here to even visit him. We have a cousin that has offered to take him in for our vacation and for a long weekend trip we wanted to do with my wife's family, but other than that, I have no help and it is so frustrating to me, because I feel like I can't go and do anything because there's nobody to help other than my neighbors will come and give him lunch if we want to go out for the day. It's VERY hard to do all of this and care for an autistic child and do homework, etc with him too everyday. I wish the VA would help more. We can't afford a nursing home for him and most of his Social Security is going to groceries and things to care for him and saving for final expenses because he cashed in his life insurance to go overseas to be with a girl that was taking advantage of him for money. Please remember me in your prayers. People talk a good game, but when the rubber meets the road.... crickets......
God bless you, I truly respect and admire you. It is damn hard, and I hope you find resources and a new, sustainable arrangement for caregiving as soon as possible.
Medicaid nursing home
Yes, I've heard crickets myself! Just taking care of your child who has autism is full time job. Maybe objective friend or family can get phone meeting non negotiable help, siblings to do their part, you've done yours. I work with disabled family member for 2 years alone with Jesus help, provision and guidance, it is wonderful when people see others in need and step in❤
I totally hear you. Am an only child. Husband stays busy with his business or his ‘working out’ and only came in after his mother had passed cause he was driving home from college and the last two weeks of his fathers life after his step mother had done it. His help is buying my mom things like AirPods for her bad hearing. I’m at my moms seven days a week cause she insists at 95 living in my parents townhouse because her mother lived with my parents. Luckily it’s only ten minutes away. But I too am worn out packing up food, her washed clothes and her daily meds to bring her daily thru Mid-west very changeable weather. I’m 65 and too had had a stroke 23 years ago from a chiropractor . So I have to try to stay aware of my own safety so I’m there for her. My kids both live an hour away. They are great at telling me how I should do it differently. I just know all of us caregivers do the better job than any nursing home.
EXCELLENT MESSAGE! I took care of my mom for eight years; she died in August 2021. I had SO MUCH to learn just by keeping faith and going through all the challenges of caring for her. I didn't get much guidance on how she was changing or how to adapt to her. I just kept going, but like the speaker says, I learned how to take care of myself in little ways. However, I wish that I had joined a caregiver group or been more open about the difficulties of being a caregiver. I didn't talk enough with others about the work of caregiving.
Easy for you to say
Thank you! I'm a 76 yr old caregiver of my wife with dementia for 5 years now. I took care of my mother with dementia for 7 yrs.
You are a wonder man!
I woke up in the middle of the night thinking she called for me four different times when she didn't. I can never get rest ever. I owe her. She did it for me as a baby.
I feel both of these things! I hear phantom footsteps in the night. It's exhausting. Sometimes I feel so resentful, and then I feel guilty for feeling resentful, because she was always an angel to me as I grew up. I owe her so much. But that doesn't make it easy.
@robotaholic my 46 yr old son has a bell he touches when he needs me. I hear it clear as day and scurry over to his bed, just for him to let me know that he didn't ring me. I get up many times in the middle of the night to the bell, just to find him sounds asleep.
thank you agree with all that was said. I always say to any caregiver I know. You need to take them out of your mind, but always keep them strong in your heart. I am a 24/7 carer for mum, after caring for dad till his passed. In other words don't let them knock you of your mind set, you always need to keep that clear. Caring is like you are driving your car in a fog, you know theres a wall coming but you just have to keep on going. You do this for love. A carer doesn't live, a carer just survives and with Gods help they make it to the end. A stronger person for having the guts to have walk that path! God bless all the CARERS out there.
I wanna die 💯
Sometimes life gives the hardest challenges to those that are the strongest, hang in there.
@@Lifeletnothingholdudown thank you, you to. you don't start strong, but you sure do end up that way.
After I heard Linda’s speech a thought came to my mind
That Linda is copy-pasting my experience of caregiving,
I am 89 and I lost my wife 3 months back who was then
85.last 31 years I was taking care of my wife who was then
54 and I was 58.She had meningitis and a soft brain stroke.
She was then totally dependent on me.last 3 years she was
Completely bedridden.She was also suffering from Dementia.
I went through all the sufferings which Linda is describing.
I wish I had heard her speech long back So that I would have
not committed some of those mistakes as a caretaker to my
wife,which Linda has described in her very useful speech.
Thanks Linda.
Death is mercy for a live in caregiver, at least for me it is when my heart is racing, exhausted, hungry, just plain wiped out. I sometimes say, take me in my sleep lord, peacefully in my sleep, amen. When I wake in the morning I pray, help me today lord….
Love them but support & allow yourself to be helped also. Brilliant and warm talk. Thank you❤❤❤
This is so needed for me. I have been the only carer for my mum since beginning of this year and it's her third time being in the hospital. It's hard.
And she felt all that with a care recipient in assisted living... I’m trying not to be bitter, but that seems like heaven to me. I know her story is supposed to help us connect to her talk... I’m on round 4 now, at 51, and I would like to experience some life without caregiving, but I’ve done the math, and it appears I will be quite old before I am free.
Hi Michelle. I know this is an older comment, but I wanted to ask if you've looked into any respite programs in your city. In my hometown we have hospice programs among others that provide volunteer caregivers for respite. They can't take the place of assisted living programs or in home providers, but they can help you feel less alone with your journey, and provide you a few hours a week to care for and reconnect with yourself. Wishing you the best and hoping you find some support to ease your burden.
I struggle with mental illness and so does my Mother.
I've had to be there for Grandmother, Father and now Mother.
Its too much.
I've been on empty for years.
That’s distressing in and of it’s self. I can say that because I’m going on 11 years of being a caregiver and I’m totally exhausted and being honest bitter about it. But I’m working on my attitude. Thanks for your response I’m not alone
@@prestontingle5014 I hope you can get the help you need (whatever that looks like) to make your life more livable for you - and even go past that and thrive. I had forgotten about this post and never came back (never got notifications that people had posted... or I didn't notice them). Anyway, I wrote that at a particularly low point. I can feel AND REMEMBER the depletion and bitterness coming off of my post. I'm in a much better place now. Due to a combination of factors, some by happenchance and some by difficult choices/design (prompted by the "bottom" I hit about the time I posted), I am no longer struggling under such a burden - and I expect to have minimal caregiving responsibilities going forward. Can't say more, because it involves family-dynamics info, and I post under my own name, but life has very much improved for me, and I hope it will improve for you, soon, as well.
@@joneal8698 Thank you... Respite help was not an option for this situation. I can't really go into it, but there are factors that make respite help not workable - and in my case, while the responsibilities felt overwhelming, it wasn't actually about not being able to be away (in the phase of caregiving reflected above).
Best speaker I've heard on being a caregiver for an Alzheimer's patent. I greatly appreciate Linda Ercoli!!
Yes, she speaks to all who are caregivers she's an amazing person.
This is very helpful. Good tips on getting respite care for self, not just physically but mentally. So often I spent time ruminating on negative future, though unknown but in a way being in that anticipated grief state. Our brain seems to either think of the past or forward thinking. I started practicing mindfulness and pursue spiritual journey. Some heartbreaking decisions have to be made, this is part of the life: live and death.
This video was beneficial. I will take the tools and use them in my daily activities while caring for my mother.
Thank you so much,
You are helping so many of us to anchor in the storm. Thank you for sharing your insights.
This was such meaningful and helpful advice. Thank you!
I needed this desperately- thank you.
Thank you very much to your very good video .❤😊
I became a caregiver 3 months ago for my father.
I am overwhelmed and depressed.
It feels like life is over. 😔
I hear you. I hope you are finding ways to take care of yourself. Next month is two years that I have been caring for my aunt, and it has been a year since my mom (her sister) sold her house and joined me to share the caregiving tasks. I hope you have help. There are ebbs and flows of emotion. Be kind to yourself. It is a marathon without a definitive end date in most cases. Learn some coping strategies as you get used to the rhythms of this new life.
@@AF-ke9by Your words are timely and perfect. It feels like I am adjusting which gives me some hope. Caregiving seems to just "happen" time becomes so precious and we know we will never be the same. Thank you for your advice and kind words.
Forever grateful.
😔🙏🙏
@@chrislim7976 You are welcome. It is important to know and feel you are not alone in this effort. Reaching out online helps when there is nothing else, sometimes. I am grateful to know you are adjusting. Some days make it seem like this will never end.
Last night? My aunt actually talked with me for a few minutes, which is rare enough, but she was mostly coherent, which was really nice.
How are you?
@@AF-ke9byAgree so much. Friends can listen only so much which is understandable and during a pandemic it is especially lonely.
I believe when we need it, things do happen to help us like your aunt reaching out. Thanks for sensing my sadness and I am not alone. What a world. 😔🙏
sending you love xxx
Taking care of my mother with ALZ is brutal. But there are beautiful, touching, and funny moments along the way. I try to hold onto those.
Given the choice and if I could roll back time I would not do what I did for over ten years. It has destroyed my life and my career.
Thank you....I really needed this...
I'm a Single Mom with 3 kids. I literally have been caring for a small child for 10 years with zero breaks and no support. I literally can't handle any more....I am so tired everyday when I wake up I'm so disappointed that I am not sleeping anymore.
I'm so sorry momma!! 😞 💔
I would go to church and drop them off at the child care during service. Get prayer while you're there. See if anyone at the church is willing to babysit once a week as service to the LORD?..
Are you able to sleep while they're at school?
So, so true, well done 😢
Thank you for this🙏❤❤❤
What about the dayto day cargiver in thetrenches. Bathroom inand out of bed who are alone and none else to orchestrate and try to pay the bills andtryto work to oay the bills at the same time having to help the lovedone to the bathroom while tring to still work. This it stress
Being a carer is a thankless job, No-one, but no- one understands the stress caregivers go through. This truly irked me.😮
Thank you, amazing performance
Thank u
This was great 👍🏻
Not living with the person you're supposedly caregiving for? Yeah, you're not really caregiving. When you get to go home and have downtime away from the person your caring for, you are living an exponentially easier life than the person that doesn't benefit from a space and life that is their own. When you're hiring someone to facilitate, you have no idea how easy you got it.
Yes, that is true, but she still speaks to all of us who are caregivers. It is harder when you're caregiving 24/7, but I still have some solemn reassurances, soaking in what she said is very helpful for me.❤
"Go to a support group" -- yeah...like there's time for that :(
That’s exactly what I was thinking
How can i go to a sulport group? Say to my lovedone. "Hey your on your own tonight. Ill getyou in bed after i come home from my meeting? This is not possible
What about online support groups are they available
EXCELENT
I would never be a caregiver!?
My mother's caregiver in addition to me passed away before my mother who was many years younger than my mom