9 replies to this topic

[Amy602]

First of all I would like to say I commend each and everyone on here for all that you do in reaching out to help others, that is so wonderful!
I work as a nurse in a nursing home and about a year and a half ago we admitted a patient that was a quad. After being with her so much we became friends.
Anyway here is her story and question.
4 years ago she was in a MVA and is a quad as a result of that. She has limited use of her hands but, numbness from say about the top of the chest down. Her husband took care of her for 3 years but gradually came to sort of resent her and how much care she took. He actually had a woman come in and walked right past her hospital bed (its in the livingroom) and go upstairs and she could hear them! Needless to say they ended up divorced and thats when she came to the NH. Well after about 8 months I guess the guilt got to him and he came and took her back home but, the thing was he wanted her 2 grown kids to pitch in and help out so it wasnt ALL on him. Of course they said they would. Well this was about 6 mos ago and she said things are getting bad again. The older kids dont help like they said they would and this causes problems. She has a aide come in for a few hours a day but the majority of her care is on him. Well, he has told her that he feels he is too young to not have a relationship and that some time he is going to want to move on....
She simply cannot go through seeing him with someone else again and she has asked me if I could do some research and find her a place that will have other quads like her. She hated the nursing home and I cant blame her. Although it is a nice one she just doesnt belong... She isnt elderly or alzheimers... Does anyone know of a place like a nursing home for quads?
Thank you for reading!
Amy in Indiana

[Illinois Boy]

What a Rat Bastard Husband........ Thank GOD for my wife staying with me....
Especiailly with my usual grumpy attitude...

I remember seeing a news show, about a whole town somewhere in the states that had nothing but wheelchair bound residents..... But I forgot where it was......

I'm sure kewlkatz will have some good advice.....

Jim

[Amy602]

Illinois Boy, on Mar 27 2008, 03:54 PM, said:

What a Rat Bastard Husband........ Thank GOD for my wife staying with me....
Especiailly with my usual grumpy attitude...

I remember seeing a news show, about a whole town somewhere in the states that had nothing but wheelchair bound residents..... But I forgot where it was......

I'm sure kewlkatz will have some good advice.....

Jim

Wow! That would be awesome for her!
Yeah he is rotten for how he is doing her...it breaks my heart!
She is the same person as before he just doesnt realize that!

[Big Valley]

I am not condoning the husbands behavior at all in this but...

Without knowing the amount of hand function she has maybe she is not doing as much for herself as she could be? Lots of quads still function highly. I am lucky enough to just barely have limited hand function and I live completely independent. I can easily see a limited hand functioning quad not needing full time care.

Why did she have a separate bed in the living room of her house? After being married and that far post injury I would think a different house would be in order if it couldn't be converted.

More rehab and some strength training might be some ideas to get this lady more independent.

Was the husband cheating because he wasn't getting any "attention" or was he not attracted anymore? Just saying being a quad doesn't mean sex is no longer an option. Without the physical interaction i can see how the husband begins to feel like a caregiver and less like a husband.

But, if this guy is bailing on his wife in this situation I suspect he would have left her anyway so don't let her blame her injury completely.

[kewlcatkez]

Amy602, on Mar 27 2008, 06:05 PM, said:

First of all I would like to say I commend each and everyone on here for all that you do in reaching out to help others, that is so wonderful!
I work as a nurse in a nursing home and about a year and a half ago we admitted a patient that was a quad. After being with her so much we became friends.
Anyway here is her story and question.
4 years ago she was in a MVA and is a quad as a result of that. She has limited use of her hands but, numbness from say about the top of the chest down. Her husband took care of her for 3 years but gradually came to sort of resent her and how much care she took. He actually had a woman come in and walked right past her hospital bed (its in the livingroom) and go upstairs and she could hear them! Needless to say they ended up divorced and thats when she came to the NH. Well after about 8 months I guess the guilt got to him and he came and took her back home but, the thing was he wanted her 2 grown kids to pitch in and help out so it wasnt ALL on him. Of course they said they would. Well this was about 6 mos ago and she said things are getting bad again. The older kids dont help like they said they would and this causes problems. She has a aide come in for a few hours a day but the majority of her care is on him. Well, he has told her that he feels he is too young to not have a relationship and that some time he is going to want to move on....
She simply cannot go through seeing him with someone else again and she has asked me if I could do some research and find her a place that will have other quads like her. She hated the nursing home and I cant blame her. Although it is a nice one she just doesnt belong... She isnt elderly or alzheimers... Does anyone know of a place like a nursing home for quads?
Thank you for reading!
Amy in Indiana

Hello Amy,

Firstly, it is an horrific thing for this lady to have to experience - the infidelity of her husband right under her nose, when she is in a difficult and limited situation. I hope that wherever this lady ultimately lives, that she is treated with the dignity and courtesy which she so deserves as a human being.

I am a qualified and RN. Prior to my chair-landing-disability, I worked in an acute medical setting, Specialising in Cardiology. I did also work in other areas and so write from my personal perspective and from that which I observed.

I am in the UK so I have no real useful practical advice in terms of facilities which may be open to your friend. What I would say though is that I have heard of individuals who are residents of a Nursing Home, and who have SCI securing further Rehabilitation. The way which they have done this is to say that the Individual as the "potential", with further rehab, to become more self sufficient. By doing this, the Insurance has paid and this has given some time for the Individual with the aid of the rehab community services, to find alternative housing arrangements.

This brings me to the second point. Is this lady wanting to live in a Nursing home, by choice? or is it the case that she feels that this is the only 'answer' to her housing and ADL (Activities of Daily Living) needs?

Here in the UK the drive is to 'Care in the community' and although some individuals with higher SCI/D have some resistance initially, they are entitled to and do secure funding for Direct Payments from Social Services. This allows the individual to manage her own care and be an Employer. A family member (not a husband or wife or someone who lives there but an extended family member) can undertake this position in most cases too. This is different from "carers allowance".
Some individuals through choice or circumstance have Agency carers who deliver this service. I am wondering if your state has a similar scheme, although no doubt it would be insurance based.

Also if this lady is b/c of her injury, experiencing a marriage breakdown, surely there is a case to obtain funds from the husband??

Clearly the Lady in question has to arrange for somewhere to live with some urgency. As I mentioned she could meet her care needs in her own home, be it rented or bought, but this would need to be secured.

Another option as opposed to the Nursing Home, is the community house. Here and I believe there in the US too, there are houses where 2 or 3 sometimes a few more, people with a disability which requires many interventions, live. There is a care worker on hand to undertake and fulfil the care needs.

The following may be a site which is of use to your friend: Assisted Living in Indiana However, I would still urge that your friend looks into all options available to her, even those she feels are not available!

Yet another option is "sheltered accommodation" whereby each individual has their own apartment but they also have a 'warden' who can come in at a moment's notice if required. If she went this type of route, the lady would also need her Care aides to meet her ADL needs etc.

Here is a contact:
Indiana Governor's Planning Council for People with Disabilities
150 West Market Street, Suite 628
Indianapolis, Indiana 46204
(317) 232-7770.

Perhaps contact these people and ask regarding the things I have mentioned above? They will at least be able to direct you to the correct department or facility.

Also, please check out:

http://www.in.gov/ic...sing/index.html
which is a site which outlines "fair housing".


http://www.in.gov/history/6406.htm



**********************************
http://cobweb.ecn.pu.../BNG/IDDR/i.htm
Independent Living Centres In Indiana
Disabling Conditions Served: All disabilities

Users Served: Anyone with a disability striving for independence

Services Provided:
• Advocacy for support
• Information and referral
• Independent living skills training
• Peer support
• Orientation and mobility
• Youth services
• Public education and development

Indiana Council On Independent Living (ICOIL)
c/o DDRS
402 W. Washington St., Rm. W453
P.O. Box 7083
Indianapolis, IN 46207-7083
(800) 545-7763, ext. 21303 (Voice)
(800) 545-7763, ext. 21427 (TTY)
(317) 232-6478 (FAX)

ICOIL oversees independent living services throughout the state and works in cooperation with the Family and Social Services Administration’s Division of Disability and Rehabilitative Services toward developing a state plan for independent living.

ATTIC, Incorporated
Pat Stewart, Director
1721 Washington Ave.
Vincennes, IN 47591
(812) 886-0575 (Voice)
(800) 962-8842 (Toll-free)
(812) 886-1128 (FAX)
Email: info@everybodycounts.org
Website: www.everybodycounts.org
(Counties Served: Daviess, Gibson, Greene, Knox, Martin, Pike, Sullivan)

Everybody Counts Center for Independent Living (ECCIL)
Teresa Torres, Director
9111 Broadway, Suite A
Merrillville, IN 46410
(219) 769-5055 (Voice)
(219) 756-3323 (TTY)
(888) 769-3636 (Toll-free)
(219) 769-5325 (FAX)
Email: ecounts@netnitco.net
(Counties Served: Lake, Porter)

Future Choices, Inc.
Beth Quarles, Director
309 N. High St.
Muncie, IN 47305
(765) 741-8332
(866) 741-3444 (Toll-free)
(765) 741-8333 (FAX)
(Counties Served: Blackford, Delaware, Grant, Howard, Madison, Randolph)

Independent Living Center of Eastern Indiana (ILCEIN)
Tom Cooney, Executive Director
201 South 5th St.
Richmond, IN 47374
(765) 939-9226
(877) 939-9226 (Toll-free)
(765) 935-2215 (FAX)
(765) 939-1309 (TTY)
Email: info@ilcein.org
Website: www.ilcein.org
(Counties Served: Decatur, Fayette, Franklin, Henry, Rush, Wayne, Union)
this is a selection, more are listed at the LINKED site

*****************************************************

and also:

GRANTS can be available from various sources, including:

Disabled Veteran's Home Accessibility Grants
Web Site: http://www.homeloans.va.gov/sah.htm
Toll Free: (800) 827-1000
Description: Grants to provide home improvement funds to make homes handicapped accessible. For more information, please contact your local Veterans Affairs Office.

The Rural Housing Service
Web Site: http://www.rurdev.us...indiv_intro.htm
Description: "The Rural Housing Service provides a number of homeownership opportunities to rural Americans, as well as programs for home renovation and repair. RHS also makes financing available to elderly, disabled, or low-income rural residents of multi-unit housing buildings to ensure they are able to make rent payments." Check out their website for a location near you.

Smock Foundation
Frank and Laura Smock Foundation
c/o Wells Fargo Bank, Indiana, N.A.
111 East Wayne Street
Fort Wayne IN 46802
Phone: (260) 461-6444
Fax: (260) 461-6678
Description: To provide financial assistance to disabled elderly, and ill individuals of the Presbyterian faith who reside in Indiana. Applications may be submitted at any time.



I hope this is of some use and that your friend finds a solution which is right for her! Please let us know how things go..

Take care,

K

Edited by kewlcatkez, 28 March 2008 - 06:38 PM.

[edlee]

K,, it never ceases to amaze me,,, the lengths you are willing to go to help someone who asks for help. The nursing community lost a great deal when you retired.


As for the guy who dumped this wife for being crippled,,, the majority of marriages don't survive an SCI. It's nobodies fault,,,,, Noone plans their life with this in mind. And ,,, no,,, she is NOT the same person she was before. I'm not and like it or not, you're not.

She can still have a happy life,,, if she chooses to. She need only proceed as if he died. She would need to find accessable housing, find carers, and decide what to do with the rest of her life. The advantage she would have is that she still had someone who cared about her even if he couldn't live with her any more.

SCI is a life altering occurance,,, for everyone involved.
ed

[kewlcatkez]

edlee, on Mar 29 2008, 10:15 PM, said:

K,, it never ceases to amaze me,,, the lengths you are willing to go to help someone who asks for help. The nursing community lost a great deal when you retired.

Thanks ed,

it means a lot to 'hear' - see that. Thanks. I figure that if I use what insight I do have here, then at least it wasn't a complete waste..Thats whats good about this place too, we all come with our unique perspectives, and between us sort out -or at least offer something/anything...

K

[qbounce]

Just wanted to bring this thread back to the top in the off-hand chance that Amy602 may pop back in to let us know what happened to her friend.

I mean, these people come into the sites, ask for our help in their moment of need, then disappear without any follow up or as much as a 'thank you kindly'. . . sheesh!

[Tired of hurting]

Wow How sad for your friend to have her husband come back, and the family to check out on both of them. I believe it is rare for a spouse to be able to be the caregiver and the mate. I think you loose the friendship, and the love that kept you together. I was told when my husband gave up after 4 months, there is a 5 percent chance of staying together. It's defenitly is the double blow. I would try to find a care home with younger people,and planned activities. Does she have a computer, could she get online with us. Just to know she's not alone. It has helped me a lot. Two years have passed,and I get along by myself. I was lonely until I found this forum. Now I feel I hang out with people who understand....Best of luck on finding her a loving home!

[Mike (c4-5) & Lorena]

Most, not all, relationships can not make it where the spouce of the disabled is spouce, lover, care taker, Dr, shopper, etc. For anyone it is very dfficult to ware all of the hats. I do not know this relationship and only knowing one side of the story is tuff to make judgement. But your not asking, just explaining. But you have made her husband out to be a pretty nasty guy. Is she perfect?

In St. Louis they have a community where there are 10-12 homes where all types of individuals with disabilities live together, cook and become like a family. I can not think of the name off hand but it looked very nice. Way better then a nursing home.