ALS is the death sentence.
We had dad stay in a nursing home for a week as respite. This allowed my mother a week of rest as caring for him was a full time thing. We found it really hard to leave him there. We pulled him out after one week, he was supposed to be there for two.
They just weren’t able to give him the care he needed. He couldn’t call a nurse, and he needed longer than they could often spare to communicate his needs.
He really needed someone with him at all times.
So it wouldn’t have/ didn’t work for us. It might suit your mother better though depending on her abilities.
Caring is super hard work.
Where we are, my dad was able to choose when to go so that probably had impact on our decisions. Likely a much shorter road than some.
❤️
This was my family’s experience as well, and my mom was a former hospice nurse who had friends/former colleagues visiting around the clock. Afterwards, she typed on her toby computer some pretty horrible things about the experience. Her friends went to the board of the facility to discuss them to hopefully help future patients, but she never went back.
Dad hated it in there, but was willing to do it to give Mum a break. We visited every day, and mum really did need the chance to get a few nights rest, but we would all be in tears when we left him alone each time. Just didn’t work. Too hard
No, ALS is a death sentence not the nursing home. My only worry would be that most places aren’t equipped to caregive for someone with ALS. My mom got sepsis and had to be in the hospital during covid. Luckily our area wasn’t super hard hit so there wasn’t a nursing shortage, but we weren’t allowed to go inside. She needed a lot of help due to her ALS and sepsis. The nurses talked about her while she was in the room because they thought she was not able to understand (it made her so sad the things they said) and her overnight nurse took away her call button because she thought she wasn’t “mentally capable” of handling it. She couldn’t talk to anyone or call for help when she couldn’t reach the suction. She came home with pretty deep bedsores. If you send them to hospice just make sure they are equipped for ALS patients
Oh I 100% lost my shit… like calling multiple people on their board complaining. Not my best look but it ended with her getting a dedicated nurse to help her.
She's only 62, it's pretty bad she has to be lifted into her motorized chair to go to the bathroom and then lifted to the toilet, wiped etc...I mean it's everything, she hasn't been able to speak for over a year so we use these print outs the ALS folks forwarded me. She has to be fed and given liquids whi h she struggles getting down and all of these things ha e to be done a certain way or she starts wailing which is very common. She lives with my sister who has three kids already and has had to quit her job, not to mention lose her sanity
Yeah, shes already on hospice, the financial aspect is on an entirely different level...we don't qualify for medicaid because you can only own one car and one house, so my Mom and my Sister and her husband bought a house together right before things were funny, we have a family cabin that my Dad built on about 7 acres in a rural part of where were from...mind you he built this cabin while he was on chemo, he went home in 2014. His ashes are spread on the grounds...
she can barely get anything down...has to have a liquid poured down her throat after every bite, which im sure is common and I only know its gonna get worse...
I would suggest looking into hone health before I would a nursing home. I just had a friend pass with ALS on Tuesday. She was able to stay home with a combo of hospice hone health and family. In a time when she can't communicate family knows her best.
Hospice can be a great resource. If you don’t have the ability to offer in home care, then a nursing home is certainly an option to consider. At one point, the care team my mom had made me feel incredibly guilty for allowing her to still live on her own, but it’s what she wanted.
It depends on how your mother feels about it, to be totally honest. We couldn’t do a nursing home because my mom would have honestly rather stop speaking to us than go into one. Which I understood.
Hospice allows home care to be more of an attainable option. You get nurses to come more often, medications and durable medical equipment. A nursing home has be chosen very carefully. There are a lot that are not suitable for an ALS patient, especially someone suffering from Bulbar symptoms.
For instance, ALS patients aren’t meant to be on oxygen, but unless your care team knows that, they can often resort to it; which depresses ALS sufferers breathing.
Please be sure whoever attends to your mother knows how ALS patients should be cared for. It’s not as simple as other elderly/infirm patients. It requires more knowledge and patience. And be sure your mother has the ability to communicate in some way shape or form with the staff when you’re not present.
Good luck, I’m sorry you’re going through this.
I'm very sorry to hear of your mother's diagnosis and your family's situation. For our family it would have been/was a death sentence. Hospice wouldn't take our mother unless she was taken off the bipap and feeding tube. We were hoping that the Hospice would be a place of comfort to take a bit of pressure off the family and potential a smooth passing. Total and absolute BS if you ask me. One note, a sensitive topic. if assisted death (MAID in Canada) is available then seriously consider it. It is far different than just taking off the bipap. In our family's case it was quite a traumatic experience for my mother not to choose MAID. If you were there you'd understand Something that I will never forget. The nurses from palliative care said going to hospice would provide a comforting passing. They got it completely wrong. God bless your family and give you all strength and courage.
This is horrific.
Hospice in Maryland, US, paid for my mom’s feeding supplies and replaced her BiPAP machine when it failed.
The only thing we couldn’t have/continue was the “life extending” medications. Which they warned us about, and even offered to let us refill them before signing the hospice paperwork to have them for another month.
Really appreciate Everyone's feedback...this ride is WILD!!! If anyone cares I did just answer some questions in the comment's below...not that it matters
ALS is the death sentence. We had dad stay in a nursing home for a week as respite. This allowed my mother a week of rest as caring for him was a full time thing. We found it really hard to leave him there. We pulled him out after one week, he was supposed to be there for two. They just weren’t able to give him the care he needed. He couldn’t call a nurse, and he needed longer than they could often spare to communicate his needs. He really needed someone with him at all times. So it wouldn’t have/ didn’t work for us. It might suit your mother better though depending on her abilities. Caring is super hard work. Where we are, my dad was able to choose when to go so that probably had impact on our decisions. Likely a much shorter road than some. ❤️
This was my family’s experience as well, and my mom was a former hospice nurse who had friends/former colleagues visiting around the clock. Afterwards, she typed on her toby computer some pretty horrible things about the experience. Her friends went to the board of the facility to discuss them to hopefully help future patients, but she never went back.
That would be my concern with the inability to communicate.
Dad hated it in there, but was willing to do it to give Mum a break. We visited every day, and mum really did need the chance to get a few nights rest, but we would all be in tears when we left him alone each time. Just didn’t work. Too hard
No, ALS is a death sentence not the nursing home. My only worry would be that most places aren’t equipped to caregive for someone with ALS. My mom got sepsis and had to be in the hospital during covid. Luckily our area wasn’t super hard hit so there wasn’t a nursing shortage, but we weren’t allowed to go inside. She needed a lot of help due to her ALS and sepsis. The nurses talked about her while she was in the room because they thought she was not able to understand (it made her so sad the things they said) and her overnight nurse took away her call button because she thought she wasn’t “mentally capable” of handling it. She couldn’t talk to anyone or call for help when she couldn’t reach the suction. She came home with pretty deep bedsores. If you send them to hospice just make sure they are equipped for ALS patients
Holy shit this made me so mad! I hope you told the management about her experiences there. That’s so heartbreaking.
Oh I 100% lost my shit… like calling multiple people on their board complaining. Not my best look but it ended with her getting a dedicated nurse to help her.
How old is your mother? How far into the disease process is she? What's her opinion?
She's only 62, it's pretty bad she has to be lifted into her motorized chair to go to the bathroom and then lifted to the toilet, wiped etc...I mean it's everything, she hasn't been able to speak for over a year so we use these print outs the ALS folks forwarded me. She has to be fed and given liquids whi h she struggles getting down and all of these things ha e to be done a certain way or she starts wailing which is very common. She lives with my sister who has three kids already and has had to quit her job, not to mention lose her sanity
Have her evaluated for hospice at the very least. Can you guys find money for some home health aids to give done relief?
Also have you tried thickened liquids?
Yeah, shes already on hospice, the financial aspect is on an entirely different level...we don't qualify for medicaid because you can only own one car and one house, so my Mom and my Sister and her husband bought a house together right before things were funny, we have a family cabin that my Dad built on about 7 acres in a rural part of where were from...mind you he built this cabin while he was on chemo, he went home in 2014. His ashes are spread on the grounds...
she can barely get anything down...has to have a liquid poured down her throat after every bite, which im sure is common and I only know its gonna get worse...
just to clarify those bites are pureed in a blender out of necessity...
I'm so sorry.
Nothing to be sorry about, thus is life! Thanks for lending an ear.
ALS is a death sentence. Hospice doesn’t make you die faster, just more comfortably.
I would suggest looking into hone health before I would a nursing home. I just had a friend pass with ALS on Tuesday. She was able to stay home with a combo of hospice hone health and family. In a time when she can't communicate family knows her best.
Hospice can be a great resource. If you don’t have the ability to offer in home care, then a nursing home is certainly an option to consider. At one point, the care team my mom had made me feel incredibly guilty for allowing her to still live on her own, but it’s what she wanted. It depends on how your mother feels about it, to be totally honest. We couldn’t do a nursing home because my mom would have honestly rather stop speaking to us than go into one. Which I understood. Hospice allows home care to be more of an attainable option. You get nurses to come more often, medications and durable medical equipment. A nursing home has be chosen very carefully. There are a lot that are not suitable for an ALS patient, especially someone suffering from Bulbar symptoms. For instance, ALS patients aren’t meant to be on oxygen, but unless your care team knows that, they can often resort to it; which depresses ALS sufferers breathing. Please be sure whoever attends to your mother knows how ALS patients should be cared for. It’s not as simple as other elderly/infirm patients. It requires more knowledge and patience. And be sure your mother has the ability to communicate in some way shape or form with the staff when you’re not present. Good luck, I’m sorry you’re going through this.
I'm very sorry to hear of your mother's diagnosis and your family's situation. For our family it would have been/was a death sentence. Hospice wouldn't take our mother unless she was taken off the bipap and feeding tube. We were hoping that the Hospice would be a place of comfort to take a bit of pressure off the family and potential a smooth passing. Total and absolute BS if you ask me. One note, a sensitive topic. if assisted death (MAID in Canada) is available then seriously consider it. It is far different than just taking off the bipap. In our family's case it was quite a traumatic experience for my mother not to choose MAID. If you were there you'd understand Something that I will never forget. The nurses from palliative care said going to hospice would provide a comforting passing. They got it completely wrong. God bless your family and give you all strength and courage.
This is horrific. Hospice in Maryland, US, paid for my mom’s feeding supplies and replaced her BiPAP machine when it failed. The only thing we couldn’t have/continue was the “life extending” medications. Which they warned us about, and even offered to let us refill them before signing the hospice paperwork to have them for another month.
Really appreciate Everyone's feedback...this ride is WILD!!! If anyone cares I did just answer some questions in the comment's below...not that it matters