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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
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.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
If you are preaying for her to die within the year then you better put her into a home and stop praying.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Chris, has anyone who is friends with your mother offered to help care for her? And, what if you were to take one shift per day as you and your wife's, and pay for two thirds of the care needed... buying a little time. It is heartbreaking. I'm so sorry.
 

chriswhit44

Member
Joined
Jun 23, 2010
Messages
16
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
OK
City
Tulsa
If you are preaying for her to die within the year then you better put her into a home and stop praying.

I am praying that she passes before she runs out of money... not praying that she dies within the year.

Also, my Mom has decided not to use a ventilator and has a DNR. When she becomes bed ridden... the only thing we won't withhold from her is her food.

Going to a nursing home could be worse then death.
 

chriswhit44

Member
Joined
Jun 23, 2010
Messages
16
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
OK
City
Tulsa
Chris, has anyone who is friends with your mother offered to help care for her? And, what if you were to take one shift per day as you and your wife's, and pay for two thirds of the care needed... buying a little time. It is heartbreaking. I'm so sorry.

I am the only family that my Mom has in the state. My sister, who lives out of state, visits about once a month. However, my wife and I are the only "free" help available.

Maybe we will start paying for care every 3rd day and then ease into it.

Not to get political... but I am embarrassed and ashamed that I live in a country where money plays a role in health care. Money shouldn't be an issue on the quality of care that our dying receives.

My mom also wishes that our state had a Death with Dignity law... unfortunately, we don't.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Chris, two things come to mind. First about the diarrhea, is it because she is on 100% formula? I was having very runny poop and had a few accidents before I started doing a couple bottles of liquid yogurt a day along with my formula and a couple of teaspoons of Benefibre with my water. Since then my system has adapted and things are much more solid and normal with a lot fewer emergencies.

Secondly, even here in Canada where we have universal taxpayer funded health care and don't have to pay for doctors appointments or for tests we still have to pay for home care. I am still reasonably self sufficient and can feed myself and take care of my bathroom functions but we are beginning the process of looking for help for me for when I can't. My wife will do a lot of course but she has to work to support us so we will need help.

I hope that you can find some good help for your mom, she deserves it.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
OK, I know I'm not processing well right now but... is your mom moving in with you an option? Does she qualify for hospice care? Glen was certainly not on his "death bed" when we started hospice.. one added bonus of that is that when he DID become more ill we already had people in place that Glen was familiar with and a routine established. The decision of no vent and a DNR could make it easier for you to get hospice in. Might be worth looking into anyway.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I am praying that she passes before she runs out of money... not praying that she dies within the year.

Also, my Mom has decided not to use a ventilator and has a DNR. When she becomes bed ridden... the only thing we won't withhold from her is her food.

Going to a nursing home could be worse then death.

Sorry that came across wrong. I appologize.

Sounds like you are not prepared to put her in a home, she can't take care of herself and needs immediate help. That, to me, leaves only one choice - are you able to move her in with you? The choices are not great for anyone with this disease and those affected by it.

Also, with the diarrhea problems what I had to eventually do, my system did not like formula, is blend up regular food in a Vita-Mix blender. That stopped the problem for me.

Every location is different , we get help to hire caregivers from a special program but no financial help for us. Our doctors, appointments, operations and hospital stays are all covered. Drugs are not until you get on hospice. There are pros and cons to living anywhere. I really feel for the situation you find yourself in but by the sounds of it you already know what you have to do.

How can we help? :):):)
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Please do look into hospice care! You would need an order from the doctor, which shouldn't be too difficult.

Good luck to you and your family and thank you for serving your community!
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Chris,
I know how hard this can be. Many of us do, but we do it or we have done it. I agree with CJ, check into hospice care and or any in home health care that you can get for your Mom. Doe's she get SS? This could help pay for the time that she would be alone. Does she own the home she lives in? If so, sell it to help pay for her care. I was my brothers primary Caregiver for many years, until he passed away in Feb. Just a little Advice: Sacrifice all money, and Yourself to take care of her because I can promise you one thing, in the end, you will not regret it! From, my own experience.
 

ccjjcc

Active member
Joined
Jul 18, 2010
Messages
88
Reason
Loved one DX
Diagnosis
08/2010
Country
US
State
XX
City
where it's green
I was my brothers primary Caregiver for many years, until he passed away in Feb. Just a little Advice: Sacrifice all money, and Yourself to take care of her because I can promise you one thing, in the end, you will not regret it! From, my own experience.

This thread really spoke to me. First, with Chris talking about not wanting to put his mom in
a nursing home. My brother is in a nursing home in a different state (one rated only 1 star) and it's bugging me no end. I have no where to take him home TO, as I live with other relatives who don't feel they can be involved that way (bringing him here). I understand that. BUT, I have nowhere to go with him, unless I can get him moved here, to a nursing home or hospice where I can be there all the time. And I don't know how well he will
hold up for how long, if I will be able to move him.

Lorie's post just made me cry, because it really touched me. That is how I feel inside about my
brother. I want to go to where he is and never leave him, if he is in a nursing home, I want to
stay by his side for as long as he is still with us, and do whatever I can to help. And, I will lose my job going there, and have no way to live, etc, except to camp out on a friend's couch that I have back there. Especially if I cannot get him moved here. Which I will try to do.
 

majikgypsy

Member
Joined
Aug 21, 2010
Messages
26
Reason
CALS
Diagnosis
11/2009
Country
US
State
LA
City
DeRidder
Please, do check into hospice! We had it when my dad was dying of cancer. They came everyday. They brought flowers. They even helped the family as a whole deal with losing him. SSDI paid for it all. Then I moved in with my mom and took care of her for the last four years of her life, nursing homes were out of the question! I know for some, there is no other option, like me, I don't think there will be anyone to take care of me should I need it.

It sounds like your plate is full, and I know what that feels like. My husband has ALS and I have no idea of what to do! Right now, it's just taken his right arm but it's going into his left arm too. I was able to convince him to allow me to have a feeding tube in him if it's needed, as long as he has a quality of life. That's thanks to one of the PALS here! All I did was read my husband his story.
 

charlottecorday

Distinguished member
Joined
Jun 1, 2010
Messages
164
Country
US
State
texas
City
dallas
Do they have group homes in Oklahoma?We have many in Dallas.The national number to find one is "A place for MOM".It's on the internet and it is a great referral system for small group homes.They usually take excellent care of patients because they have often less than 10, sometimes less than 5.They depend on the lives of their patients to stay afloat because they are small businesses.I don't know how much you have to spend but their cost is way below that of a massive nursing home(that is scary).In Dallas, I know some that did charge 2,000 a month and you get hospice care, too,Some may be less.Just tell A place for mom your price range.The group home pays them to have the honor to take care of your mother.You would not have to worry about the care there.
It's always a much smaller patient/caregiver ratio.1/5 is much better than 1/40.
 

Tony1739

New member
Joined
Feb 28, 2010
Messages
5
Reason
Loved one DX
Country
US
State
CT
City
Ridgefield
Hey Chris,

I can't believe how alike our situations are. My mom, 67, is still on her own but barely. My family is getting prepared to have those difficult talks. Also I am a fire fighter. These forums have great it advice, I check them as often as I can and it helps.

Hang in their brother!
T
 

Navystitcher

New member
Joined
Oct 19, 2010
Messages
5
Reason
CALS
Diagnosis
05/2010
Country
US
State
OK
City
Tulsa
wow reading your post Chris was like reading my story. I too am caring for my mom who just turned 68 and has ALS and Dementia. Her ALS started in her throat and so she has a feeding tube. She is still walking but is starting to lose that ability. Her hands/arms are pretty much useless. We too are in Tulsa. I fortunately have a business that I do out of my house so I have moved that to her house so I can "try" to run it and take care of her at the same time. Our current struggle is that with the dementia I can't reason with her as to why she shouldn't be up walking around the house as she has fallen probably 6 times in the last week. We have gotten to where we have to strap her in to a chair s she can't get up and hurt herself. I don't have a lot of answers for you but to know someone is out there feeling your pain. We have hospice which has been wonderful as they can help with suggestions and also medicine. If she is on medicare you don't pay for hardly anything including her medicines. Not sure if I am allowed to say which hospice we have but if so let me know and I will tell you. They are a larger one and have been so good about getting us the stuff we need like a hospital bed, wheelchair, the cough assist, suction device oh and they just started coming out to help bath her so we don't have to do that anymore.
 
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