Status
Not open for further replies.

mztialady

Member
Joined
Apr 17, 2008
Messages
11
Country
US
State
AZ
City
Tempe
Hello,
I have been registered on this site for awhile, but this is my first thread.

I need some direction. Recently, my husband was diagnosed in Feb 07 and has declined very quickly. He now has a trach and is on a ventilator. He has been in the hospital since Nov 23. We want him to come home, but have no idea how to get care for him during the day. I have taken the vent training along with some friends and family. We had a caregiver lined up for the daytime while I work, but she backed 2 days ago.

I do understand that if I can't get him care during the day, he would have to go to a facility. I don't want this. He has already said that if he has to go, he might as well just go to hospice and be done. I don't want that either. He's only 40 and we have only been married for 15 months.

We really want him to come home. I know I can get him general care, but insurance won't pay for someone to care for the trach and vent.

What options do I have.

Thanks for listening
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
there must be a way

Hi there. I am sorry to hear about your current situation and it angers me to think that options may be limited. I am based in the UK and do not know much about insurance/care situation in the USA but I am sure there are people on here who will be able to provide practical advice.

From what I have read on this forum (especially JoelC's posts) there is no reason why one should not have a fulfilling life on the vent - with the right support in place.

Danijela
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
I understand your frustration. My husband was also diagnosed in Feb. 07 and is 40 years old! We quickly discovered that insurance will not cover home health care of any kind (nursing or otherwise). Is your husband on Medicaire?
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
What an overwhelming situation! Unfortunately, my advice isn't going to cheer you up much, but the main thing I would recommend is to talk to a case manager/social worker at the hospital to see what your options are. Could you be a little more specific about the caregiver who has backed out? Was this person going to be paid, or was this a friend/family member volunteering to help out?

Does your husband have upper body paralysis at this point? Would he be able to put the trach tube back on if it popped off? That's the major consideration if he is going to come home without round-the-clock care.

Medicare does not pay for private duty nursing or certified nurse assistants. Oh how I wish it did! Medicaid does, though, so you might be able to qualify if your income is not above the maximum cutoff.

So here are my suggestions, for what it's worth:
1) Talk to a case manager/social worker at the hospital to see what is available in your area.
2) Figure out what you can manage financially, if you qualify for Medicaid, etc.
3) Consider a nursing home or private care home as a temporary solution if you just need more time to work out the logistics of him coming home. This was what our case manager recommended to me when my mother's insurance had decided that she had met the maximum number of days at her long-term care hospital. Mom vetoed that option, she came home from the hospital right before a major holiday (a disaster--never, never do this!), and she was right back in the ICU the next morning after she almost died due to an incompetent caregiver (I had been lied to by our [former] home healthcare company about the qualifications of this person). During the next couple of weeks, I had adequate time to get things in better order, but just keep in mind that the transition from the hospital to home is a major ordeal. You will need to take off several days from work to help get adjusted. You will also need to have someone come assess your home to make sure that it is safe. And you will need to have a good emergency plan in case something comes up unexpectedly. If you need more time, a nursing home doesn't have to be permanent. There are also private care homes in some cities. We looked into one that took a maximum of 8 patients, run by a nurse, with other assistants as well. And it was much nicer than the one nursing home in the area that accepts vent patients.
4) Consider whether working full-time outside of the home is something you can handle right now. This is a personal decision based on factors unique to you--where you are in your career, whether you would easily be able to reenter the workforce later on, how necessary you are for your workplace, etc. Even if you continue to work full-time, expect to take a lot of sick days. Caregivers don't always show up, you'll probably need to be at home for nurse/respiratory therapy visits, and you will spend a lot of time dealing with DME (durable medical equipment) and prescriptions. You will be exhausted, and you will be worried all day at work about whether everything is OK at home. Depending on your situation (and again, only you know what is best for you), it might be advantageous to quit your job and take the Medicaid. Your husband also qualifies for Social Security Disability and Medicare, even if you haven't set it up yet--but if you still need to do this, move fast because it does take a few weeks to get approved.

The first three months are the most difficult, I think, because it takes time to become used to this bizarre nether-world of life at home on a vent. But once you get used to it, things get easier. You'll get into a groove, but like I said, it takes time...

Good luck!
 

mztialady

Member
Joined
Apr 17, 2008
Messages
11
Country
US
State
AZ
City
Tempe
Thank you so much for the responses.

The caregiver who backed out was his home health attendant who he has a very close bond with. She was his caregiver prior to our vacation. She initially agreed to get the vent training so she could remain his caregiver. We even agreed to sign a waiver for the home health agency that stated they would not be liable for the vent as she was doing vent care as a friend of the family. She was still going to get paid thru Medicaid. The home health agency she works for scared her out of it.

He has Medicare and Medicaid. From what I understand, neither will pay for someone skilled to take care of the vent.

My husband is not completely paralyzed at this point, but very near, he would not be able to help himself at all. The caregiver he had previously fed him and did his basic grooming during the day while I worked. I did everything else. I know he can't come home if I am unable to find care for him while I am at work.

I thought about working from home, or not working, but his Soc Sec check would not be enought to live on.

From the time we met, our life has constantly changed. My husband is very proud and won't let anyone do too much for him but me. I love him and I am fully committed to doing whatever I can to maintain any quality of life for him. Yes, there are times when I have asked myself what did I get into. The sleepless nights, the tired, achy body, the weary mind, and even the exhausted emotions are worth it. He is the love of my life, my perfect match.

I feel guilty for sometimes wishing that I didn't have to deal with this, and then I feel guilty when I trust his care to others.

Thank you for letting me vent a little.:wink:
 

katekath

Distinguished member
Joined
Oct 2, 2008
Messages
148
Reason
CALS
Country
SGP
State
SG
City
SG
I'm not too sure how things work over in the US since I'm not from there, but just wish to say, don't let the guilt get to you and it is completely normal to feel that way.

Hope you get some help soon. :)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
The suggestion to ask a social worker is good. They usually know the in's and out's of services in your area. I'd also check with your local MD chapter and the social worker at his ALS clinic.

KateKath is right- quilt is a useless emotion at this point. And you may need all your energies to fight for his right to be at home. Maybe you should check out Joel's thread on this subject. He put up an argument and won his case, as I recall.
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
We all have individual situations that guide our solutions, and there is no reason to feel guilty about the frustrations of trying to deal with a disease that our health care system almost completely ignores. You'll find your way--it just takes time--and you are right, it's all worth the effort!
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
I was told by my insurance company that a vent does not require a nurse, just a home health care worker. I was also told that Medicaid covers home health care, but Medicare does not. I hope you can find some help!
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I am so sorry to hear of the challenges you face, it must be incredibly frustrating and emotionally draining.

You are all making me thankfull I live in Canada. I have a trache and vent and am at home with my wife doing most of the care, we also have paid caregivers (ordinary people) that we trained ourselves. You do not need to hire a high priced professional, it is very easy to train anyone to look after the vent. It takes very little time each day to do all that is needed. They try to scare you by telling you how much work this is and how complex it is - don't believe those lies - it is easy!

Also, you are not in prison - they cannot keep you against your will. I know PALS from the U.S. that just got up and went home, they cannot stop you!

Be strong and keep fighting!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I am so sorry for your prediciment ... the last thing you need with ALS is having to fight The System. Have you contacted ALSA and also MDA? My ALSA rep was very helpful about finding caregivers, and I wonder if MDA might be able to chip in some $$ ? Or at least know where you can get assistance. The suggestion to talk to a hospital social worker is excellent, too. Also, your insurance may have case managers available. Mine(Blue Shield HMO) does, and she is great at cutting through the paperwork.

Joel is right. Your husband cannot be held in a hospital against his will. Good luck!
 

mztialady

Member
Joined
Apr 17, 2008
Messages
11
Country
US
State
AZ
City
Tempe
Thanks

Thank you all so much for the support. I have spoken to his case worker @ the hospital and she has been pressuring the insurance company to provide nurses. I have been signed off to do his vent care. The hospital and the insurance company are well aware that no matter what they do, he is coming home with me.

People have tried to convince me that it will be so hard to care for him. I have to constantly remind them I have been taking care of him for the last year. The only new piece to his care is the vent. Even when I am with him in the hospital, I care for him. I do his vent/trach care, his feedings, meds, etc.

I just want to thank you all for the encouragement!
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
I hope you will keep us updated on how you and your husband are doing.

I also hope the insurance company comes through with the nursing help.
 

mztialady

Member
Joined
Apr 17, 2008
Messages
11
Country
US
State
AZ
City
Tempe
Disappointed!

:sad:I feel like crying right now. The case worker just called me to say that the insurance co reps went to the hospital today to see my husband and have decided that they will not pay for a nurse to care for the vent. I want to cry becasue they didn't tell him, they are leaving that for me to do. The hospital case worker got his hopes up so high, and I am sure he thought they were visiting him today to assess him so he can go home and so he could meet the nurse. I get to go tell him otherwise in an hour.

I hate to see him upset. I don't even know how to console him over this. I can't even find the bright side. All I can say is INSURANCE COMPANIES SUCK. :-:)x
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Cowards!

You should not have do deal with such a stressful situation on your own! I would get the social worker at the hospital, and whoever else can rationally explain why no nursing care will be provided, to come with you to see your husband.

How can people be so callous?

I would lay it on the social worker very thick..."I just cannot see telling my poor husband that he cannot come home, as he was denied nursing care. I need someone's help. I need someone that can explain in detail, the logistics of why we were denied in-home care. ETC!" Don't let them get away without putting them through a bit of "what if it were your loved one?"

What were their reasons for denying the care? I shudder to think what the reasons really were.

It is such a pity that we all have to deal with such lousy healthcare systems. It sickens me. No pun intended.

I wish you and your husband the strength and patience to find a solution to your problem.
 
Status
Not open for further replies.
Top