Placement update

JoseyWales

DH moved into his new home last Tuesday. I didn't visit him on Wednesday, but went over on Thursday and helped him eat dinner. He was clean, but just sitting alone with his head down. He wasn't upset, he seemed content. But it broke my heart. He looked so alone.

They said he had slept almost not at all the first 2 nights. He was upset and angry (confused!) the first night, but the second one went better, he just didn't sleep. Overall, I guess it's been a fairly good transition. 

But I don't think he's recognized me on any of my visits. Now that I have been able to step back, I see how far he's progressed. He really can't eat much by himself, and he can't handle a cup on his own. He forgets how to use a straw, and ends up blowing bubbles. His head droops, so getting him to drink out of a glass is so hard. 

Cognitively, he seems worse. He was walking much slower, his head was down so much more, and he really wasn't responding much to me. I contribute much of that to lack of sleep and change in the environment, but it's so hard to tell. 

DS was home from college for spring break last week. It was nice that he was able to spend a little time with his dad on Tuesday before we left. It was also good for DS and me - we were able to spend some time together this week. I didn't have to face the reality of an empty house until yesterday.

And now, my house is empty. I go through wanting to drive over and bring him home, but the rational side of my mind knows he wasn't happy here, and I know I can't take care of him anymore. He didn't know me half the time, was always wanting to GO (home, out, hard to tell what he wanted). I know I've shared so much of it here, and I know it was time. But that doesn't make this easier. I want to bring my fully healed husband home. There just isn't an option for that.

It's harder than I thought it would be. This disease sucks.

Crushed

Been there , done that,  Totally agree

perhaps I can share  poem I wrote

  

An empty bed

An empty room

An empty life

Nothing but gloom

Her body  walks

But she is gone

There are no talks

To fill the dawn

They comb her hair

And paint her nails

Dress her in blue

And shirts with sails

My princess bride

She came to be

The  golden life

She built with me

She stunned the world

With grit and brains

She’s in the books

They know her name

We walked with bears

And Rhinos too

Dove coral reefs

So deep and blue

We raised two girls

So bright and strong

I lean on them

To get along

Fifty  years

It seems too few

Her clothes are blue

And I am too

Lynne D

Josey, what a heartbreaking story. My thoughts are with you both.

JoseyWales

Beautiful poem, Crushed. 

It made me cry.

Ed1937

Josey, I'm sorry it's so hard. You'd think after placement things would immediately seem to get better, but I guess that's not always the case. Please don't second guess yourself now. You know this is what needs to be done.

Crushed, nicely written, but sad.

Quilting brings calm

Josey - please don’t bring him home, you almost killed yourself and almost lost your job trying to take care of him.   Whether he is here or there, he needs 24/7 care and you can’t do that.  I also remember that dear son was getting stressed out also / is he still dropping out of college? 

Go visit when you can as long as it doesn’t stress him out.  Visit less in that situation.  

Regarding the empty house - when you get that restless feeling, go to your sewing studio,  even if just for 20 minutes.  There won’t be as many memories there and you can get absorbed in cleaning out a drawer or getting rid of out of date stash. Or go for a walk.   Or bake goodies for the MC staff.   

When you aren’t restless but feel energized to do a chore inside the house/ do it.  

When you are tired, go lay down. 

When you want to go out to eat or shop after work, do so.  

JoseyWales

I am not going to bring him home. It's those times when I want so bad to go back in time, and I can fool myself by thinking that he's just out for a little while and then will come home just fine. Kind of like our LOs want to "go home".  It's just that I know there's no going back.

Yes, DS still plans to quit school after this semester. He'll be moving back home. So I really only have an empty house for a couple of months. Although DS works into the evening (he gives music lessons), so I imagine I won't see him all that much.

I have plans for a quilt.   But before I can get to that, I have to catch up on my work at school. I let a lot of things take a back seat in the past couple of weeks, and I'm playing catch-up. 

I joined this site almost 6 years ago. I know I was reading posts here long before that. It's been a long journey to this spot, and I've read about many others who have taken this same journey. I'm following so many others' footsteps. You'd think that would make this easier, but it doesn't. Only a bit more familiar. 

Joydean

Josey I’m sorry it is so hard. 

When you were describing how he appears to you now reminded me of something a friend of mine said. She had just placed her husband in MC. She told me how different he looked to her. His doctor explained it like this, when you are taking care of someone 24/7, are so sleep deprived, worn out, you really haven’t seen the difference. It was there, you just couldn’t see it.

I hope and pray you get some much needed rest. Take care. 

ImMaggieMae

Josey, there are days when I want to tell DH to just ‘snap out of this’ and have things go back to the way they were. How can this all be happening to us? Why can’t I make it better?  I wish there was something I could do to make things better for you.

Beachfan

Josey,

Your story is my story.  DH in MCF since November.  I visit once a week.  He doesn’t know me. I help him eat lunch, walk him around his cottage, take him to a chair or sofa for a “group activity” in which he does not participate.  He sleeps all night, eats like a horse, is clean and well cared for.  He is there; I am here.  I’ve loved him with all my heart since I met him Freshman year in college, in 1964.  I have no regrets; everyday was a good day with him.  

Don’t worry about your son.  He’s young; he’ll figure it out.  Try to get back on track with your schoolwork and your quiet house.  It will get better, it just won’t ever be “right” again.  Thinking of you often.  

Marie58

Josey, I'm sorry it's so hard, but I can empathize. My DH has been in MC for 18 months, which is hard to believe. I'm glad your son was there last week so you weren't totally alone. Catch up on your sleep and your school work, which I assume is sped paperwork!! That alone will help your overall outlook. I wish I could say it'll get easier. I, too, wish we could fix it and just bring them home. Blessings as you and DH adjust to this new normal....

JoseyWales

Yes Marie, Sped paperwork! 9 weeks ended last week, so progress reports for 30 students - each with 2-3 goals, plus an intial eval meeting today, 2 annual meetings this week, another moving to a service plan and 1 more for a student whose behaviors have become problematic. Which means an update to his BIP. Oh, and that parent is bringing an advocate. 

JoseyWales

Went to visit DH today. He was much better than when I last saw him. They said he's been sleeping most of the night, which was really reflected in his appearance (head less drooped) and his conversation. Today he knew me, was trying to call our dog (I explained to him that she was outside) and actually looked at pictures on my phone. We finally had a warmer weather day here, so we were able to go outside into the courtyard and walk around. 

He never asked to leave. He ate lots for dinner. And he knew who I was. But he didn't ask me where I'd been - he just accepted my presence. 

Feeling a bit better tonight. It's a roller coaster of emotions for sure.

Beachfan

JoseyWales wrote:

Oh, and that parent is bringing an advocate. 

Josey, I don’t know which experience from my “former life” I dreaded more- - being the teacher facing the unhappy parent and advocate, or later, being the supervisor supporting the teacher who was facing the unhappy parent and advocate.  Both were disappointing and left me feeling sad for everyone involved.  As much as I loved my educational profession, I don’t miss the conflict that sometimes came with the job.  Good luck with all your meetings and paperwork.  (I started teaching in 1968, pre IEP; my biggest daily dilemma was keeping enough change on hand for the kids’ milk money! I taught all day, every day!   No lunch break, no prep time, but no mountains of paperwork and all the parents loved and respected the teachers. It was fun.)

Marie58

JoseyWales wrote:

Yes Marie, Sped paperwork! 9 weeks ended last week, so progress reports for 30 students - each with 2-3 goals, plus an intial eval meeting today, 2 annual meetings this week, another moving to a service plan and 1 more for a student whose behaviors have become problematic. Which means an update to his BIP. Oh, and that parent is bringing an advocate. 

Oh Josey, you brought back some not-so-pleasant memories---the part of teaching that I always felt took so much time away from the kids. Unless you're in the sped trenches, you have no idea!!! Hang in there. Spring break must be close??