Wednesday, October 15, 2008

Ah, hell!

Over the past year (well more really), our family has discussed and made plans for what we'll do when our youngest daughter reaches 18. While others plan a second honeymoon, or maybe take a fabulous trip when the kids have all moved into adulthood, we could not. Our youngest child, Rachel, is profoundly autistic and severely mentally impaired. We've cared for her for every one of those 18 years and feel that it's OK now to make plans to place her in a group home. The trouble is, there aren't any group home spaces to be had. Places like that are filled solely through attrition and someone has to die for our daughter to secure a spot. We also want a place that is for young women only and only for those who have similar problems. We didn't want someone violent sharing her living space. Alternatives to a group home aren't very attractive. We wouldn't be able to live with ourselves if she were to be institutionalized. That isn't how we want her to be able to live her young adult life.

After much reflection, our plan is to turn our own home into Rachel's lifelong home. It'll also be home to 3 or 4 other young women who are in the same predicament. We wouldn't operate or staff the home, but it'll be where she lives until she dies.

I have very mixed feelings over this. As I write this, I am tearful. I can't believe it's been 18 years. It's been the hardest 18 years of my life. Her disabilities have ruled this roost for every minute, of every day, for 18 very long years (plus 8 months-but who's counting?). We've had community mental health services in our home for 10 of those years. It's been like a perpetual revolving door of social workers, therapists and caregivers. We have no privacy and nothing is sacred. The last social worker who had to evaluate her was the biggest blowhard I've ever had the misfortune to meet. Thankfully, I only had to do so once. He is not her primary social worker and the one who does come monthly to our home, is wonderful.

Next week, a slew of people from our county will be visiting to look the house over. I know I should be taking this opportunity to scrub every crevice clean. I should have the Dyson doing overtime. Oddly, I'm paralyzed by fear. I don't know if this is the right thing to do. What will I do with the time I usually give to her? Who will be my excuse for staying in at night(after night, after night)? What will my life be like if it isn't defined by her needs? I came in the house this evening thinking she must be home alone. She was asleep in her bed with only Duke to watch her. Her caregiver was gone for the night and I panicked. She wasn't alone, her brother was in another room. He just didn't have his car here. The point is, it's her and her needs I always think of first. I don't know what it'll be like to put myself, my other children or even my marriage first.

It seems every time we come to a major crossroads, I'm more and more apathetic. I became resigned to my lot in life a long, long time ago and feel an underlying ripple of fear with change. I know this would be good for all of us and maybe even her. She can't speak to tell me what she feels about this plan. In the past, she's always gone with the flow and adapted much better than I and deep down, I think she'd like it.

The problem with our plan is that if I hate this for her, it won't be so easy to take it all back. Our home won't be our home anymore. It'll be home to her and several other young women. Revoking this decision would have ramifications for them all. This is a big deal and you'd think the least I could do is get off my ass and scrub something. I just can't. Please pass the tissues. I feel the waterworks are about to begin in earnest.


Brenda said...

The waterworks are happening for me also Rudee, as I just read your post. An old song "Reach Out And Touch Somebody's Hand" by Diana Ross went through my mind. You are faced with an extremely difficult choice. It doesn't sound like either choice will be an easy one. My heart goes out to you. Life would be so much better sometimes if I were more robotic, and could think logically and have less emotions. I will hold you in my thoughts and prayers.

Anonymous said...

Wow, Rudee, I don't even know what to say. I wish I could say something comforting, but it's doubtful any cliches would be of help to you. My heart goes out to you, and I'm sending buckets of whatever karma you need. I wish I could help.

The Crusty Crone said...

Oh Rudee... I had no idea of your situation. (I haven't gone back to the beginning of your blog and read forward. Perhaps its been mentioned. Sorry.)

I can't even begin to imagine what life has been like for you... and now this decision. Its a huge one!! With profound effects!!!

I don't even have any words of comfort... but here's some tissue. And here's some cyber love. {{{{ Rudee & family }}}}

Winifred said...

What an amazing decision you've made and a brave one.

I don't know what to say to help either. Maybe a candle and a prayer?

Mrs. G. said...

Wow. These are the kind of decisions that lead me to go to bed right after dinner.

I'm sending you cyber chocolate and roses.

I am consistently humbled by what we humans will do for our children.


Betty Flocken said...

Rudee, I wish I lived close, I'd come over and clean what I could for you. Since I wouldn't have any sage advice or wisdom, I'd wash your dishes.
For what it's worth, I think the plan you guys came up with is a wonderful plan, very caring and very giving. You're in my prayers, good thoughts and/or best wishes.
BTW, I'm so happy to be blogging; the number of wonderful people I've met on line is such a blessing. You're one of them

Rudee said...

Thank you everyone. Sometimes it's so hard to write what I really feel but last night, I thought, "what the hell?" It's what I'm living and going through. You all lighten my heart with your encouragement and like Betty says, it's so wonderful to meet such amazing people online. I've had a lot of shallow thinkers tell me I should live this life until I die. The blowhard social worker was one of them. Always, they don't walk this walk and they are the folks who lack empathy for others. They are also the ones who never offer anything but advice. Your words make up for those people and I'm grateful.

the rotten correspondent said...

Is this the house that you live in now or the house that you own and rent out? I'm a little confused. Would you all be living in the same house, or how would it work?

Sorry I've gone straight to logistics. It's a coping device, because your post tore me to shreds. You've always been open about your situation, but very rarely elaborated on it too much.

I can't even imagine how you manage this. Consider yourself seriously cyber hugged.


Sandy said...

I'm with the others here, so wishing I could really pass a tissue and hang out with you for awhile. What a hard hard decision this must be. I may be missing something, but does that mean you will move out and live in another house? And like you said, what if it doesn't work out, I can see the conflict or rather "feel" it in your mind.

I really hope you find some peace about you choice/decision and know that whatever you do will be what's best.

I didn't quite realize you had an autistic child until something you mentioned once in a comment.

lots of cyber hugs to you Rudee.

Rudee said...

No RC and Sandy, it's the house we live in now. We would move out and Rachel would stay with her new "roomies." The other homes we own are group homes. I don't think she'd fit in with those that reside there as they are mentally ill and she is developmentally disabled. I can't change how the other two homes are managed. So, we'll move out and temporarily rent.

Anonymous said...

I wish I had some great, magical words to share. I am so very sorry that you are facing this situation and can only imagine how very difficult it is for you and the family. I know how much you love your daughter, you can feel it coming through your post loud and clear.

I think what you are doing is brave and selfless. Anyone who has not walked in your shoes has no idea how painful and consuming this is. You mentioned that it will not be staffed by you or run by you, I hope that means you are creating your own group home, where others can give the caregiving. Not that you will ever stop being her caregiver, but it would be nice if you could trust and turn the care over to good people, who will love, understand and treat the girls with the respect they deserve. You can love, love, love her and will always be a part of the care, but still have your time. Time with your husband, time with friends and most importantly time with yourself.

This is a problem, a shortage that is huge and I hope and pray it will be addressed on a Nation Wide Level. Group homes, staffed monitered correctly seem to make so much sense and should be given more attention.

Sending you hugs, love and hope. I wish I could do more!

BJ said...

This is such a touching story. I had to come back to comment. I am so touched by all that you write. I can't even begin to imagine what you and your family are facing. But I know in my heart that you are going to do what you feel is best for your daughter. I can feel your love in the words you write. Please know that you will remain in my thoughts and prayers. God bless.

laurie said...

i'm not sure i understand--you're giving away your house? hiring people to run it as a group home? wow. what a tough decision.

i think your decision to find a place for your daughter to live must be excruciating to make, but i think you're making the right choice. she will be fine, she'll be happy, and you need to have some sort of separate life.

18 years is a long, long time. but you have many more years than that ahead of you. good luck.