chriswhit44
Member
- Joined
- Jun 23, 2010
- Messages
- 16
- Reason
- Loved one DX
- Diagnosis
- 07/2009
- Country
- US
- State
- OK
- City
- Tulsa
I am a caregiver for my Mom. She was diagnosed with ALS in July of 2009. While she is entering her 2nd year since her diagnoses... I consider this her 3rd year with the disease because I noticed symptoms for about a year before she was diagnosed.
This is where we are at:
My mom still lives independently... but I am over at her house on most days.
Her legs are relatively unaffected, but her upper body has diminished to the point that she really can't do anything.
She's had a peg tube for about 2 months now and we are giving her 3 cans of Nutrient 2.0 a day plus 1,000 cc's of water. She was becoming constipated until we increased her water intake to 1,000 cc's. This has made a huge difference.
I am her primary caregiver and I pretty much feed her and clean her after she has gone to the bathroom.
She is 66 years old and is on Medicare.
Through Medicare we have a Nurse that comes by once a week, a speech therapist that comes by once a week, an OT that stops by periodically and a respiratory therapist that comes by once a month and a woman who comes by and bathes her twice a week. Besides her peg tube she also has a Bypap, a cough assist machine and a suction.
She is supposed to wear her Bypap as much as possible and she uses her cough assist twice a day for exercise 30 breaths in the morning and 30 breaths in the evening.
The only medication she takes is Zoloft. (Liquid form in her peg tube)
We live in Oklahoma and have recently registered her with the Oklahoma chapter of the MDA where she is qualified for $500.00 a year for equipment.
If any of you are caring for a person who qualifies for Medicare... please take advantage of everything that it will pay for.
My biggest concern is when my Mom will need full time care. Medicare will not pay for this and in home nursing is about $12,000 a month and a nursing home is about $5,000 a month. We may have enough money to last a year with this... but that is about it.
This is where we are at:
My mom still lives independently... but I am over at her house on most days.
Her legs are relatively unaffected, but her upper body has diminished to the point that she really can't do anything.
She's had a peg tube for about 2 months now and we are giving her 3 cans of Nutrient 2.0 a day plus 1,000 cc's of water. She was becoming constipated until we increased her water intake to 1,000 cc's. This has made a huge difference.
I am her primary caregiver and I pretty much feed her and clean her after she has gone to the bathroom.
She is 66 years old and is on Medicare.
Through Medicare we have a Nurse that comes by once a week, a speech therapist that comes by once a week, an OT that stops by periodically and a respiratory therapist that comes by once a month and a woman who comes by and bathes her twice a week. Besides her peg tube she also has a Bypap, a cough assist machine and a suction.
She is supposed to wear her Bypap as much as possible and she uses her cough assist twice a day for exercise 30 breaths in the morning and 30 breaths in the evening.
The only medication she takes is Zoloft. (Liquid form in her peg tube)
We live in Oklahoma and have recently registered her with the Oklahoma chapter of the MDA where she is qualified for $500.00 a year for equipment.
If any of you are caring for a person who qualifies for Medicare... please take advantage of everything that it will pay for.
My biggest concern is when my Mom will need full time care. Medicare will not pay for this and in home nursing is about $12,000 a month and a nursing home is about $5,000 a month. We may have enough money to last a year with this... but that is about it.