theotherginger
New member
- Joined
- Mar 30, 2018
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 06/2017
- Country
- US
- State
- PA
- City
- Philadelphia
Hello,
I’m new to this forum. My mother was diagnosed with ALS in June of 2017. However, we believe her symptoms began a year or more prior. As you all know, it was devastating.
My father is her primary caregiver. The ALS Association assists us with a nurse aid for 10 hours per week. We also pay someone out of pocket to help on some days, to provide relief to my father. However, it is becoming increasingly difficult to care for my mother, as her symptoms continue to progress and she becomes easily frustrated (completely understandable) and very upset with us (my father, me and my brothers). She was a very active, fun woman – a flight attendant who traveled the world – and now she is bound to a chair and hospital bed. We use a Hoyer lift to transfer her from one place to another. Insurance does not provide additional aid for home health aide care.
Our house is handicap accessible. This was our only silver lining when we received my mother’s diagnosis. My older brother was born severely handicapped. He is 37 years old with the capacity of a 6-month old infant. He cannot talk or walk. He has a feeding tube. He lives at home. We DO receive extensive home health aide and nursing assistance for my brother. However, my father remains his primary caregiver as well. It’s a lot.
We refuse to consider putting anyone in a facility.
My brothers and I are considering finding someone to pay out-of-pocket to help. I understand this is not “due-process”, but we are desperate. My father is retired, but his new life is clearly taking a toll on him. He is 67. We worry about him so much. He is a saint, but it’s clearly not easy. My brothers and I all work full time jobs, and we visit our parents’ home regularly and help as much as we can. Does anyone have suggestions of what we can do going forward? Has anyone hired someone out-of-pocket? We would need to find someone who is physically strong, patient, and knowledgeable about ALS.
Thank you.
I’m new to this forum. My mother was diagnosed with ALS in June of 2017. However, we believe her symptoms began a year or more prior. As you all know, it was devastating.
My father is her primary caregiver. The ALS Association assists us with a nurse aid for 10 hours per week. We also pay someone out of pocket to help on some days, to provide relief to my father. However, it is becoming increasingly difficult to care for my mother, as her symptoms continue to progress and she becomes easily frustrated (completely understandable) and very upset with us (my father, me and my brothers). She was a very active, fun woman – a flight attendant who traveled the world – and now she is bound to a chair and hospital bed. We use a Hoyer lift to transfer her from one place to another. Insurance does not provide additional aid for home health aide care.
Our house is handicap accessible. This was our only silver lining when we received my mother’s diagnosis. My older brother was born severely handicapped. He is 37 years old with the capacity of a 6-month old infant. He cannot talk or walk. He has a feeding tube. He lives at home. We DO receive extensive home health aide and nursing assistance for my brother. However, my father remains his primary caregiver as well. It’s a lot.
We refuse to consider putting anyone in a facility.
My brothers and I are considering finding someone to pay out-of-pocket to help. I understand this is not “due-process”, but we are desperate. My father is retired, but his new life is clearly taking a toll on him. He is 67. We worry about him so much. He is a saint, but it’s clearly not easy. My brothers and I all work full time jobs, and we visit our parents’ home regularly and help as much as we can. Does anyone have suggestions of what we can do going forward? Has anyone hired someone out-of-pocket? We would need to find someone who is physically strong, patient, and knowledgeable about ALS.
Thank you.