chriswhit44
Member
- Joined
- Jun 23, 2010
- Messages
- 16
- Reason
- Loved one DX
- Diagnosis
- 07/2009
- Country
- US
- State
- OK
- City
- Tulsa
Before you read this... my intention was to get your opinion... however, by the end, it has really turned into me ranting about how horrible this disease is... so I understand if you don't read any further.
I've posted on here a couple of times and the replies have really helped so I thought I would get some opinion's.
1) My 66 year old Mom has ALS. It has been over a year since her diagnoses, but symptoms have been there for at least 2 years.
2) She uses a feeding tube and a bi-pap (maybe 2 hours a day) I know that is not enough but she is still living on her own and does not have the ability to take it on and off herself.
3) She has very slurred speech, can no longer swallow, has virtually no use of her arms or hands... but her legs are still strong. She can still walk around her house with little trouble.
Here is the main problem:
She is starting to lose control of her bowels. Nearly all of her BM's are diarrhea. Many times, by the time she realizes she has to go to the bathroom... it is too late and she releases down the back of her legs on the way to the toilet. We have depends, but because she is still living on her own, I hate to leave her with them on, because if she had an accident, she would be forced to sit in it until I came there to change her... which could be several hours.
I am a firefighter and my wife is a nurse. I work every 3rd day and so 2 out of every 3 days I can be my Mom's primary care giver. The day I am at the fire station, my wife comes by twice a day to check on my mom, feed her, etc.
We have a 1 year old daughter and my wife is 6 months pregnant with our second child.
The burden is starting to take it's toll on us. Between our jobs, our children, our marriage and taking care of my Mom... life is becoming more and more difficult.
The feedings and spending time with her is not the issue. It's the mess we are finding when she has a accident and the cleaning that comes with it. She probably has 4-5 BM's a day... and at least one accident a day now. She also suffers from frontal lobe dementia and that alone can fray anyone's nerves.
I refuse to put my Mom in a nursing home. With the experience I have with my job... nursing homes are the last option for me. I understand that some people have no other choice... but the thought about putting my mom in one of these places makes me want to cry.
We have now started to think about hiring in-home health. The problem here is that it is very expensive! If we needed 24/7 in-home health care for my Mom, she has enough in her savings to last about 1 year before she would be out of money. I would do this in a heart beat if I knew that she only had one year left to live... but my fear is that we do this... and she lives 2 more years... with her last year being broke and forced into a very bad nursing home.
I guess I am more ranting then anything else... but I am at my rope's end. I've got two bad options:
1) Get in-home health care and pray that my Mom passes away before she runs out of money.
or
2) Against her will, put her in a nursing home that may or may not give her quality care and basically steal her dignity from her by forcing her into one of these places. I understand that there are some VERY nice nursing homes... but they are out of our price range and my job has really made me very bitter about these places.
Tomorrow, I am having a sit down meeting with my Mom, her sister and my sister and we are going to have to make a very difficult decision.... whatever we come up with will be the best of two bad choices.
I've posted on here a couple of times and the replies have really helped so I thought I would get some opinion's.
1) My 66 year old Mom has ALS. It has been over a year since her diagnoses, but symptoms have been there for at least 2 years.
2) She uses a feeding tube and a bi-pap (maybe 2 hours a day) I know that is not enough but she is still living on her own and does not have the ability to take it on and off herself.
3) She has very slurred speech, can no longer swallow, has virtually no use of her arms or hands... but her legs are still strong. She can still walk around her house with little trouble.
Here is the main problem:
She is starting to lose control of her bowels. Nearly all of her BM's are diarrhea. Many times, by the time she realizes she has to go to the bathroom... it is too late and she releases down the back of her legs on the way to the toilet. We have depends, but because she is still living on her own, I hate to leave her with them on, because if she had an accident, she would be forced to sit in it until I came there to change her... which could be several hours.
I am a firefighter and my wife is a nurse. I work every 3rd day and so 2 out of every 3 days I can be my Mom's primary care giver. The day I am at the fire station, my wife comes by twice a day to check on my mom, feed her, etc.
We have a 1 year old daughter and my wife is 6 months pregnant with our second child.
The burden is starting to take it's toll on us. Between our jobs, our children, our marriage and taking care of my Mom... life is becoming more and more difficult.
The feedings and spending time with her is not the issue. It's the mess we are finding when she has a accident and the cleaning that comes with it. She probably has 4-5 BM's a day... and at least one accident a day now. She also suffers from frontal lobe dementia and that alone can fray anyone's nerves.
I refuse to put my Mom in a nursing home. With the experience I have with my job... nursing homes are the last option for me. I understand that some people have no other choice... but the thought about putting my mom in one of these places makes me want to cry.
We have now started to think about hiring in-home health. The problem here is that it is very expensive! If we needed 24/7 in-home health care for my Mom, she has enough in her savings to last about 1 year before she would be out of money. I would do this in a heart beat if I knew that she only had one year left to live... but my fear is that we do this... and she lives 2 more years... with her last year being broke and forced into a very bad nursing home.
I guess I am more ranting then anything else... but I am at my rope's end. I've got two bad options:
1) Get in-home health care and pray that my Mom passes away before she runs out of money.
or
2) Against her will, put her in a nursing home that may or may not give her quality care and basically steal her dignity from her by forcing her into one of these places. I understand that there are some VERY nice nursing homes... but they are out of our price range and my job has really made me very bitter about these places.
Tomorrow, I am having a sit down meeting with my Mom, her sister and my sister and we are going to have to make a very difficult decision.... whatever we come up with will be the best of two bad choices.