Our ALS Caregiver section features more video clips from interviews with ALS caregivers as well as information about self-care, asking for help, and caregiver resources. Visit www.youralsguide.com/caregivers for more.
Watching my mother suffer has been the worst thing I could possibly imagine. She can no longer walk or talk, and is fed through a tube. It has become completely overwhelming trying to balance everything. Sometimes she gets frustrated, I get frustrated, and I feel so horrible because Lord knows she didn't ask for this. It is a cruel disease.
My sister in law has it. I'm not even closely related and if I could ID take it on from her. She led such an active life. It breaks my heart and also for my brother who is in his 70s. What an awful disease
...You CANNOT do all three and think for one second that you, your children and mother will not suffer. I don't know all your circumstances but I do know that if you continue caring for her, it will come with a price, which cannot be repaid - your life, body, mind, and relationships will all deteriorate to nothing...I'm speaking from personal experience. Don't allow your guilt to hold you hostage. The best thing for all of you is to get her a caregiver who is not family...she probably won't like this very much but it's for the greater good of everyones' health, lives, and relationships. with each other.
The Resistance It sounds like you’ve definitely been through this. My mom is also stubborn and hard to care for. I am calling in all her friends and other family for help bc I’m starting to become resentful and worn down. We are also looking at hospice care and a housekeeper. I love my mom but you’re right it is wearing me down to nothing. This is all so horrible. I thought I could do it but I can’t. I guess it’s the lack of sleep. She doesn’t sleep well and gets up several times, which means I get up several times. Do you experience that? Getting no sleep for weeks at a time is a special kind of torture.
@@breezyveezy1 110% - ABSOLUTELY! - After, a while, you don't even feel human, anymore! The lack of sleep and inability to nurture yourself and body, eventually affects your memory and cognitive functioning...you have ZERO energy for yourself or anyone else, the mere process of showering and dressing yourself will have you feeling exhausted and overwhelmed. As the snowball continues to roll and grow, your life become riddled with stress and anxiety, you stop eating, either because you're too exhausted or nervous, as you've been living in this state of "on call, 24/7, emergency care". I have to keep my phone on vibrate throughout the day because just the phone going off, will startle me into a panic that feels like sirens - you aren't living anymore - you're just surviving...living on pins and needles at the beck and call, of all those around you. - What will you do, when your body stops functioning properly and you need someone to take care of you and nurse you back to health because you ran yourself and body into the ground caring for everyone else around you? - Don't expect THEM to take care of YOU. It SHOULD work both ways, but the sad, cold reality of the situation is that it doesn't. - Meanwhile, your children are being emotionally neglected because their parent is ill and unpresent. My heart breaks for you and your family. Please, learn from my mistakes so you won't have to bear the same burdens
@@breezyveezy1 ....I'm sorry to hear that. I wish, I could have saved my own relationship. - You're definitely not alone. I'm sure you're a very compassionate woman and daughter. We're constantly taking care of everyone else that we forget all about looking after ourselves
...If you are fortunate to have someone to care for you or your loved one, GET OUT OF YOUR OWN WAY and let them do it - it is so incredibly unhealthy to be a caregiver for your immediate family - your relationship with yourself, them and those around you will eventually suffer.
Our ALS Caregiver section features more video clips from interviews with ALS caregivers as well as information about self-care, asking for help, and caregiver resources. Visit www.youralsguide.com/caregivers for more.
Watching my mother suffer has been the worst thing I could possibly imagine. She can no longer walk or talk, and is fed through a tube. It has become completely overwhelming trying to balance everything. Sometimes she gets frustrated, I get frustrated, and I feel so horrible because Lord knows she didn't ask for this. It is a cruel disease.
I’m sorry to hear what you and your mom are going through. How long has it been since she’s been diagnosed?
My sister in law has it. I'm not even closely related and if I could ID take it on from her. She led such an active life. It breaks my heart and also for my brother who is in his 70s. What an awful disease
I’m drowning trying to raise my kids and taking care of my mom with Bulbar ALS. It’s making me sick.
...You CANNOT do all three and think for one second that you, your children and mother will not suffer. I don't know all your circumstances but I do know that if you continue caring for her, it will come with a price, which cannot be repaid - your life, body, mind, and relationships will all deteriorate to nothing...I'm speaking from personal experience. Don't allow your guilt to hold you hostage. The best thing for all of you is to get her a caregiver who is not family...she probably won't like this very much but it's for the greater good of everyones' health, lives, and relationships. with each other.
The Resistance It sounds like you’ve definitely been through this. My mom is also stubborn and hard to care for. I am calling in all her friends and other family for help bc I’m starting to become resentful and worn down. We are also looking at hospice care and a housekeeper. I love my mom but you’re right it is wearing me down to nothing. This is all so horrible. I thought I could do it but I can’t. I guess it’s the lack of sleep. She doesn’t sleep well and gets up several times, which means I get up several times. Do you experience that? Getting no sleep for weeks at a time is a special kind of torture.
@@breezyveezy1 110% - ABSOLUTELY! - After, a while, you don't even feel human, anymore! The lack of sleep and inability to nurture yourself and body, eventually affects your memory and cognitive functioning...you have ZERO energy for yourself or anyone else, the mere process of showering and dressing yourself will have you feeling exhausted and overwhelmed. As the snowball continues to roll and grow, your life become riddled with stress and anxiety, you stop eating, either because you're too exhausted or nervous, as you've been living in this state of "on call, 24/7, emergency care". I have to keep my phone on vibrate throughout the day because just the phone going off, will startle me into a panic that feels like sirens - you aren't living anymore - you're just surviving...living on pins and needles at the beck and call, of all those around you. - What will you do, when your body stops functioning properly and you need someone to take care of you and nurse you back to health because you ran yourself and body into the ground caring for everyone else around you? - Don't expect THEM to take care of YOU. It SHOULD work both ways, but the sad, cold reality of the situation is that it doesn't. - Meanwhile, your children are being emotionally neglected because their parent is ill and unpresent. My heart breaks for you and your family. Please, learn from my mistakes so you won't have to bear the same burdens
The Resistance You nailed how I feel. I’m glad I’m not alone. I’m going to take your advice bc my kids ARE suffering as my marriage is too.
@@breezyveezy1 ....I'm sorry to hear that. I wish, I could have saved my own relationship. - You're definitely not alone. I'm sure you're a very compassionate woman and daughter. We're constantly taking care of everyone else that we forget all about looking after ourselves
I am a caregiver of my 93 y/o mom and my 39y/o daughter. I have NO support and was just searching for ANYTHING that helps. 🙃 😭😭😭
...If you are fortunate to have someone to care for you or your loved one, GET OUT OF YOUR OWN WAY and let them do it - it is so incredibly unhealthy to be a caregiver for your immediate family - your relationship with yourself, them and those around you will eventually suffer.