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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.
 
Welcome, what a thoughtful and loving post. I am glad you are with us. I think this is awful what the COST of this disease on so many levels. We are here for you, visit us whenever you can.
 
Hi my name is Nat and I care for my wife. I noticed you are using the cough assist. We were advised to purchase ;the bealt by some but were told by othes the cough assist does the job. Do you find that the cough assist is working in your case.

Thank you

:?
 
hi , is your mom alone at night .. is it possiable she can move in with you , or viseversa .. i do not know much about you family wise ... so i cant help you see things that maybe you havent thought of ... but we will all support you and give some ideas as best as we can we have great people here and thanks for your information best of luck to you glad your mom has you
 
Hi my name is Nat and I care for my wife. I noticed you are using the cough assist. We were advised to purchase ;the bealt by some but were told by othes the cough assist does the job. Do you find that the cough assist is working in your case.

Thank you

:?

hi , if you post this question as a thread you may get a lot more replys i heard of the cough assist but , not a bealt , thats why i am suggestion it as a post of its own ... i see you are new and i had a very hard time learning how to post a question if that , is that you dont know how i am not good at explaning it but reply to this if it is and someone will tell you how better than i could and welcome to our forum
 
Nat,

I replied to your post (re: cough assist) in the "introduce yourself" forum, but it disappeared.

My husband has the cough assist. I've heard of the vest, but know nothing about it. The cough assist works very well.

See if your local ALSA has a cough assist in their loaner closet, as it is very expensive, even with insurance.

The RT will need to show you the technique on how to use the machine and what settings to start out with. We took ours to the ALS clinic so the RT there could advise us on usage. (very heavy machine, by the way)

Sorry about your wife.
 
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.

Hi:)
Sorry to hear about your mom. Most of ALS care is considered just care giving at first. I have hired a 24-hr caregiver who lives in my home. Depending on the level of care an agency will quote you a price of $125-150 per day for in-home non-nursing care. If your mom does require 24-hr nursing care (rare) insurance will pay for that. Do you get social security disability benefits? That helps some.
Sharon (swi71)
 
Hi my name is Nat and I care for my wife. I noticed you are using the cough assist. We were advised to purchase ;the bealt by some but were told by othes the cough assist does the job. Do you find that the cough assist is working in your case.

Thank you

:?

We have been using the cough assist for about a week. We have it set at a pressure between 35-45 and we do 3 sets of 10 in the morning and then again in the evening.

We were told that the reason why my Mom feels so tired is because she is not breathing normally. There is a build up of carbon dioxide in her lungs and that the cough assist will help her get rid of that and take in more oxygen and this should help her have more energy.

To be honest, I haven't seen a big improvement yet.

However, the bi pap that we are using is supposed to increase quality of life by 500%... or so the Dr. at the MDA clinic told us. The more you use it... the better. In an ideal world, my Mom would wear it at night... however, since she lives alone... this would be basically handcuffing her to her bed because she does not have the ability to take it off or put it on herself. So far... we are using it 30 minutes, twice a day. Which isn't much... but better then nothing.
 
hi , is your mom alone at night .. is it possiable she can move in with you , or viseversa .. i do not know much about you family wise ... so i cant help you see things that maybe you havent thought of ... but we will all support you and give some ideas as best as we can we have great people here and thanks for your information best of luck to you glad your mom has you



My mom is alone at night... so far. My wife and I live in a 1,500 square foot house with a 1 year old baby, another one on the way and two dogs. We don't have the room for my Mom to move in. However, her house is only 3 blocks away so I am over there a lot.

When it comes time for my Mom to need 24 hour care... we are going to reassess the situation and go from there. I used to constantly think about the future and my Mom's ALS.... but now I take it one day at a time and it seems to really help.
 
Hi:)
Sorry to hear about your mom. Most of ALS care is considered just care giving at first. I have hired a 24-hr caregiver who lives in my home. Depending on the level of care an agency will quote you a price of $125-150 per day for in-home non-nursing care. If your mom does require 24-hr nursing care (rare) insurance will pay for that. Do you get social security disability benefits? That helps some.
Sharon (swi71)



My Mom gets SS but not SS disability. She had to retire from teaching when she was diagnosed and when we crunched the numbers... regular SS plus her teacher's retirement was more then SS disability. We were told you can have one or the other... but you can't have both.

Combined she make about $1,900 a month and her house and car are paid for.

What does the in home care that you use provide?

To be honest with you, I am not sure if she will need an actual nurse towards the end or just someone there to take care of her 24 hours.
 
Hey, Chris. Your story sounds similiar to mine 2 years ago. I am my mom's primary caregiver. She now has a vent and a peg tube. I feed her real food that I mix up in a vita fmix. This has made a huge difference in her health. We still use the cough assist regularly. She now uses her chair most of the time. She and my dad moved in with my husband and I a year ago....Last year we spent over 13,000 in medical expenses and that was with medicare and secondary insurance. We quickly ran out of money. I understand about needing help. Do you have any support from family....friends?
 
Chriswhit44, Please call your respritory therapist to discuss, it sounds to me like your Mom needs to use her bipap 8hrs at night, 60 minutes a day won't do much for Co2. I don't believe the cough assist will do it for Co2 its the bipap. If you get her regular on the bipap she will feel better and get stronger. It worked for me. You might use a different mask or try a nose pillow I can take on and off with one hand. If she cant do that maybe its time for 24 hour care for her safety. Do you go to the MDA clinic in OKC if not you need to, its one of the best clinics around Dr. Beson is great, trust me I go there. If you have any questions please ask.
 
Chriswhit44, Please call your respritory therapist to discuss, it sounds to me like your Mom needs to use her bipap 8hrs at night, 60 minutes a day won't do much for Co2. I don't believe the cough assist will do it for Co2 its the bipap. If you get her regular on the bipap she will feel better and get stronger. It worked for me. You might use a different mask or try a nose pillow I can take on and off with one hand. If she cant do that maybe its time for 24 hour care for her safety. Do you go to the MDA clinic in OKC if not you need to, its one of the best clinics around Dr. Beson is great, trust me I go there. If you have any questions please ask.



Yes we go to the MDA clinic in OKC. This is where we got all of the respiratory equipment for my Mom. We really like Dr. Beson and are going back in September.

I realize my Mom needs to wear the bipap at night when she is sleeping. However, she can not put on and take off the mask herself. Also, she can only stand to wear it for about 30 minutes at a time. I have explained the benefits to her... but ultimately, it is her decision on whether she wants to wear it at night. As much as I would love for my Mom to be around for a long time and be as healthy as she can be... I can't force her to do anything. Hopefully, over the course of the next few weeks... my Mom will get more used to wearing it and be able to wear it longer.
 
Hey, Chris. Your story sounds similiar to mine 2 years ago. I am my mom's primary caregiver. She now has a vent and a peg tube. I feed her real food that I mix up in a vita fmix. This has made a huge difference in her health. We still use the cough assist regularly. She now uses her chair most of the time. She and my dad moved in with my husband and I a year ago....Last year we spent over 13,000 in medical expenses and that was with medicare and secondary insurance. We quickly ran out of money. I understand about needing help. Do you have any support from family....friends?



My Mom has Medicare and a secondary insurance as well. So far, between the two of them we haven't paid for anything. Maybe a co-pay here or there but the cost has been minimal. I know that is going to change when she needs more care... but so far we have been lucky.

My wife and I are the closest relatives my Mom has within a 4 hour car ride. My sister lives 4 hours to the North of us and she comes down at least once a month. My brother lives 4 hours to the South of us and he never visits. He says he can't handle seeing our Mom this way.... it upsets me... and I have begged him to come... but I can't force him to do anything. He will regret it when she is gone.

I am a firefighter and my wife is a nurse. We have dealt with death before... more then most when it comes to our job. The one thing I want to let everyone know is that if you are the primary care giver for your loved one and there are family members who live out of town who only visit about once every 6 months or so... expect there to be some problems when the loved one passes away. In most cases, the family members who are out of town who do not see the dying relative often seem to have a harder time dealing with the death then the family member who was there, every day, until the end. Just some free advice.
 
My Mom gets SS but not SS disability. She had to retire from teaching when she was diagnosed and when we crunched the numbers... regular SS plus her teacher's retirement was more then SS disability. We were told you can have one or the other... but you can't have both.

Combined she make about $1,900 a month and her house and car are paid for.

What does the in home care that you use provide?

To be honest with you, I am not sure if she will need an actual nurse towards the end or just someone there to take care of her 24 hours.

Hello ,My husband was diagnosed. with ALS Jan.1,2005.He is now on a ventilator and can not move anything but his eyes.I found a program called CSSP. by accident and research.Look up Acumen ficalagent.com Go into Georgia forms,right beside Georgia it says states map.It lists all the states that offers this program and what that state calls that program.When my husband got this program he automatically got medacaid and I have not had to pay out of pocket for much.I hope this helps.Did you say you are in Oklahoma?I believe this is one of the states.Check it out . Hope this helps!God Bless Bobbie
 
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