HI, New to the forum from Wisconsin

[Sheba1]

I just wanted to introduce myself. My husband is disabled but he doesn't live at home. He was in a bad car accident 3 years ago (1/15/2007). His car swerved on snow and ice into the left lane and he was T-boned by oncoming traffic. He has an extremely severe traumatic brain injury he never recovered from. Had PT/OT for 1-1/2 years but made no progress, 2 doctors said he will never walk again. He has right-sided paresis and severe short term memory loss, he can't remember anything for more than a few minutes. He thinks it's the 70s and he thinks he's in his late 20s (he's 58). He usually remembers me (married for 30 years) but has trouble with our kid's names. He doesn't know the names of the people in his facility that are there everyday. He's totally incontinent and can't do anything but watch TV and feed himself.

When our children and I were discussing Stan coming home and my caring for him with the rehab center doctor and staff a year after the accident I started becoming more and more anxious and afraid at the thought of taking care of him. The rehab staff felt Stan wasn't coherent enough to even have the desire to go home and was happy just having someone taking care of him, regardless of who it was, and they recommended a group home where he could get the care he needs and I agreed.

I feel my situation seems different because everytime I read articles regarding spouses of someone like my husband it always from the perspective the couple previously had a perfect marriage and that makes it hard for me to talk about my situation because that isn't true in my case and I know there have to be other spouses who are in my situation who were abused by the injured spouse, in my case 30 years. I feel what happened to my husband was horrible and I feel really bad for him and I want to oversee his care as long as I can, but it's hard to handle the guilt I feel because I don't miss him, in fact I am relieved he is no longer here, and I have a difficult time visiting him now. I have anxiety attacks and depression if I'm there too much or am too involved in his care. For the first 1-1/2 years I was there 3-4 times a week with him but I got really burnt out doing that and had to stop. I am having problems with the group home he's in now. They seem to treat me with contempt and are disrespectful to me because I visit my husband once a month and talk to him on the phone once a week. They seem to expect me to be there all the time and they don't seem to understand Stan's condition or my situation. Our 3 oldest children were there constantly during the first year after his accident, but don't really visit that much anymore either. Stan never had a relationship with any of our children when they were growing up, would barely give them the time of day. I am surprised they care as much as they do. I don't feel comfortable discussing my marriage or personal life with the group home staff or owner. They seem like very callous people.

I've had problems with anxiety attacks and depression on and off since my husband's accident. The depression has been worse lately because of problems I'm having with the group home. I'm trying to have him moved to another group home right now.

Well, this is probably way too long - just wanted to introduce myself and my situation.

Thanks

[Richard]

Sheba:

Welcome! You are not alone. There are a number of people on this Forum and members of the WSA whose ill spouses (IS's) are living in institutions. And there are many like you, whose marriages were shaky before the accident, injury or diagnosis of a chronic illness came along.

We are here to offer emotional support to WS's, that will help them to regain a balance in their lives, between caregiving for their IS and care for themselves, the WS.

I am glad you posted here, keep reading and posting, and you'll recognize your feelings are shared by others, and will gain recognition...

As for the NH people, that's unfortunate that they have a bad attitude towards you. The spouses and other family caregivers who visit their relative/friend in an NH should not have expectations placed on them about frequency of visit. Is there one person there who seems more open to you, with whom you could discuss this problem? Or possibly a social worker/therapist who works with the nursing home?

Over to others... Good luck!

[LarryB]

Welcome to our family. You are not the only one in this same situation. Many WS are faced with this life after having a poor or below normal marriage. Whatever decision you make will be the right one for you. I would think long and hard about bringing someone back into the home after being abused for years.

You seem to be doing well now, yet still visiting and carrying for your husband. If you can continue that, good. If not, that is good too! You must make the decision that is right for you and your family.

You will find many here that will support you.

Be well.

[jumpinjan]

Hi Shelba,

Welcome to the forum... I read your whole post and it sounds so similar to my life...

My IS was in a really bad motorcycle accident on 8/3/2007. He also suffered severe TBI and is completely disabled... He can't even feed himself....he can talk and he remembers me...

He was in rehab for well over a year as well.... I also struggled with bringing him home and the other TBI spouses on this board helped me to understand exactly what that would mean...

So I decided I could not handle that at home...so he now lives in an NH... It is not a great place...but they at least keep him clean, fed and safe....

His kids visited him (they are teenagers) alot the first year or so...and then they stopped going...

I used to go 3 to 4 times a week to visit him and I too burned out...

We did have a good marriage before the accident.... so in that way we are different...

So if you ever want to PM me.... I'd be happy to "talk" with you...

((((((((((((((Shelba))))))))))))))))

Jan

[Kronberg]

Welcome, Sheba1! Your introduction is not too long at all! Please never feel bad about posting here - long or short. My husband is at home (MS) but I do understand how good it migh feel if he was in a NH and I wasn't the primary caregiver. My heart goes out to you. I hope you find good things here to help you cope and decide what is right for you and your fammily. I know I do. ((((((Sheba1))))))

[Katt]

Sheba,

Welcome to the forum. Indeed, your introduction is not to long and explains your situation very well. (sad as it is)

It is so easy for staff members to pass judgement on patients families. I probably have been guilty of that at some time. However, you have brought to mind that we never know what is behind any given situation.

I am so sorry that you have had it so rough, that has to be so disheartening. Would it be appropriate for you to move on with your life, divorce with him in his condition may not be legal (never could understand this), but at least open yourself up for a new path of life.

I do understand some of what you are saying - things weren't great here before IS became disabled. I have recently decided to do somethings for me. It feels good, but I sometimes hate to come home.

Come often, vent, scream, cry and laugh - it is good for what ails ya.

Kat

[kitty]

Sheba1,

Your post really touched my heart. Welcome to the forum. As previous posters said you'll find many of us with similar situations. It occurred to me that many WSs are in a sense, disabled by the role their IS played in their marriage now those issues are compounded by a catastrophic illness; worse yet as Kat said it may be impossible to leave the already failed marriage.
I hope your are able to find some comfort and healing here. They're a great group of people/friends.

kitty

[ramhtr]

Sheba, Welcome! This forum is a place where you will find support from people who understand your feelings even if your situation is not exactly like theirs. My husband lives in a nursing home we had a good mariage(not perfect, is any marriage?) before his dementia set in. I feel a sea of emotions about him being in the NH. from relief to guilt to sadness.
We are all in difficult situations, this forum has been helpful to me hope it is helpful for you. Robin

[Harried]

Welcome Sheba. I'm so sorry that you need us, but glad you were able to find us. I think one thing I've learned through all of this is that feelings are neither good or bad. They are what they are. They are just like a dashboard full of lights. They are warnings, indicators and information. We use them to help us detect problems and once we are aware, then we can do something about them.

Here is a (((((hug))))) for you. And, keep writing. Sometimes getting things out help us more than any advice we might get, although, this is an amazing place for great advice too!!!

[adelle]

Sheba, you are welcome here any time of the day or night, and in-between. IMO: you owe them nothing, so please do not let them give you doubts about the care you are able to provide. Here, you can be yourself and share your joys, doubts, fears and tears. Adelle

[adelle]

Sheba, you are welcome here any time of the day or night, and in-between. IMO: you owe them nothing, so please do not let them give you doubts about the care you are able to provide. Here, you can be yourself and share your joys, doubts, fears and tears. Adelle

[LaLuLu]

Sheba,

Welcome to the forum! I'm sorry you need to be here, but hope you find as much comfort here as I have...it has been an incredibly bright spot in my life during a very difficult year...

I think one thing I've learned through all of this is that feelings are neither good or bad. They are what they are. They are just like a dashboard full of lights. They are warnings, indicators and information. We use them to help us detect problems and once we are aware, then we can do something about them.

This rings so very true to me...I hope Harried's words resonate with you as well...

Big hugs,
LaLuLu

[qtrhrsemom]

Welcome to our little family. You will find much comfort and knowledge here. I'm sorry you were in an abusive marriage before your IS accident. Please don't let the staff at the group home make you feel guilty. They don't know you or your situation. Please post often!

[tundra lodger]

Welcome, Sheba1!
While I'm sad you've reason to be here, I'm glad you found our little oasis in the oftentimes emotional 'desert' of WellSpousedom. May you find support and friendship here.
So much wisdom-sharing already! One thing I'd like to add is that no matter what the nature of the relationship, respect for yourself and your needs is the #1 priority for you. Whatever that means.
And we'll be here to help you figure it out, and support you while you do.
All my best to you.
*bigolehugz*
tl

[Sheba1]

Thanks for all of your support and understanding. I feel better having posted here and sharing all of your situations that are similar to mine. Have to keep after myself to keep coming here and not get overwhelmed and stop taking care of myself, which seems to be my problem sometimes.

I have contemplated divorcing my husband (had been for years before), but never seriously enough to inquire into what the law is here in WI. Some people seem to look down on spouses who divorce in this situation, which I think is completely wrong. I can understand it completely. I'm sure even when the marriage was good it's a very difficult thing to handle this kind of life and some people are stronger than others. I have to either adjust to this way of life or I may have to consider divorce if it gets too hard. I'm sure there will always be those people who criticize because they haven't lived in your shoes.

Thanks again