u/Then_Manufacturer163

I just need to vent, again. my son suffers from Tourette’, severe ADHD and OCD. This week has been especially bad. He’s developed physical tics where he flings his head back and it’s causing severe headaches, neck pain, so I had to take him to the hospital through the ER to get new stronger meds for those tics. So now he was physical tics like shaking his head, snapping back his neck, kicking objects, punching random objects and severe muscle tightening to the point where his muscles cramp. His audible tics are fuck, pussy, the N bomb and the C word. Emotionally it’s been hard cos he’s expressed suicidal thoughts cos he doesn’t want to deal with the pain.

As a parent it’s so hard to watch and feel helpless.

My wife’s MS has been acting up, dizziness, nausea, vomiting, she’s required so much care physically and emotional.

I’m just feeling so overwhelmed today, like this can’t get any harder but It does.

its such a lonely feeling, the person I relied is no longer able to help me. no family or friends live near me. Like I sai I just need to ven.

I have posted here before, I’m a full time caregiver for my sick wife, I manage my sons mental health issues which are severe, work full time so I am exhausted and don’t have a lot of time.

but I’m feeling so lost and alone. ive been doing this for 10 years, and im very isolated, I don’t have any friends and family lives far away. I’m so stressed and overwhelmed but I want to start living again, even just a little.

Im wondering if you guys have suggestions for weekend stuff I can do that doesn’t cost a shit ton of money (one family income here), and gets me communicating with people again.

any advice would be so appreciated.

This poem is extremely personal. I have been on this edge many times. I was thinking of making this into a song.

 His shadow walked, his head held down,

The smile he practiced, thin and worn.

A darkness sat behind his eyes,

No one could see or recognize.

No one could understand his pain,

Like footsteps hidden in the rain.

In his darkest days no one asked,

A chance to save, a chance that passed.

His mind was still, his eyes were blank,

In a cold dark room, alone he sank.

Another chance just passed him by,

With lonely thoughts, alone he'd cry,

No angel came to save his soul,

To heal the pieces, make him whole.

His mind was like a spinning wheel,

Spinning thoughts he could not heal.

Not good enough, he felt no worth,

A broken man upon this earth.

In his darkest days no one asked,

A chance to save, a chance that passed.

His mind was still, his eyes were blank,

In a cold dark room, alone he sank.

He stepped beyond his worth that day,

In raging storms he slipped away.

His mind was churning endlessly,

He chose to set his spirit free.

To kill the pain, he turned away,

And put his weary ghost to sleep.

Now answers people around him seek,

For secrets that he didn't speak.

His heavy grief, a weary ghost,

Now haunts the ones who loved him most.

They wander blind through fading light,

And trace his ashes in the night.

In his darkest days no one asked,

A chance to save, a chance now gone.

His torch went out in endless night,

He lived alone, alone he died.

No one saw his pain,

Behind his shadowed gaze.

His tortured soul was caged,

Lost inside the haze.

No one saw the dark,

No one saw him fade.

No one looked to see...

I have a question to the caregivers that are caring for a spouse. How do you manage the lack of sex and intimacy?

I’ve been with my wife since 1993, and both of us have been extremely dedicated to each other. I’ve never cheated, I know she hasn’t either. We’re not perfect, but we worked. 

She was diagnosed with MS in 2003, and the last ten years have been a steady decline. She’s now completely bedridden, she’s incontinent, she’s lost all bowel control. She has all of her faculties, some memory issues but physically I do everything for her.

We haven’t had sex in 10 years, and I’ve been faithful the whole way. I haven’t cheated, but I’m really feeling lonely, and the lack of intimacy has left me feeling so helplessly alone and lost.

We’re more like caregiver/patient now. We can’t sleep in the same bed, we can’t sit beside each other, I’m so lonely, isolated, hurt, depressed. 

How do you guys handle that? I’m having such a hard time feeling the emptiness all the time.

does anyone know of any caregiver support groups in Durham? I am a full time caregiver to my wife who has secondary progressive Multiple Sclerosis. Shes 100% bedridden. I work full time, I have 2 kids, my son has some severe mental health issues. I do all the work, I take care of all appointments, I do everything.

Im in debt now due to medical bills and devices, I‘m isolated and alone, I don’t have any friends and my marriage is now a caregiver/patient relationship. I dont get love or intimacy.

I just need some understanding people, maybe to meet up with and just talk.

If anyone knows of a support group, please tell me.

hating your every minute of your life, realizing you are truly alone, even when you’re around people, realizing that you can’t see any hope is bad enough.

But wanting to end it every and knowing that you’re trapped in abject pain and misery is worse. You know that tomorrow will not feel better, nor will the next day, nor the next.

Knowing whats coming, and there’s nothing you can do, is the worst feeling.

Quick history, my has secondary progressive MS, she now totally bedridden, needs a catheter, can’t even roll over in bed. Her latest MRI showed new lesions and her brain shrank approximately 3.5% in 18 months. her doctor told me thats a lot. I want to start talking to her about what she wants after she passes. it’s obviously a subject that’s taboo, she doesn’t want to be reminded that she’s going downhill fast. I know she’s scrared, but I want to allow her the chance to be part of that decision making.

Anyone had to ask this question and how did you approach your spouse? I’m in the middle of the chaos and I feel like I’m too emotional to just blurt it out. maybe I’m overthinking but I’m having trouble with this.

any feedback is appreciate.

I have been caring for my disabled wife for 10 years, she’s totally bed bound. I do everything for her, I have 2 kids, I work full time and I do everything in the house that 2 people would normally do. I’ve just reached a point where I’m not living, just surviving. Im 55 so I feel like my time is running out. Im alone all the time, im isolated, and im losing control, ive lost myself. I dont know if I have a future even.

My wife is not like a spouse anymore, we patient/caregiver. So 10 years of no romance, no sex, no intimacy.

Does anyone have this experience? what do you guys do when you feel alone and depressed, and isolated. When you’ve lost the joy of doing things you used to love doing?

is it just carry on cos that’s your responsibility? Do any of you have strategies to not feel this way? How do you feel less lost? For me this is manifesting in anger and frustration, which I hate. I try to be calm, but I just can’t take more pressure. I try to not let my brain run wild and spiral, but it’s hard to stop negative thoughts and self destructive ideations to end it all. I am signed up to see a psychiatrist but there’s a waiting list apparently.

or is this just par for the course? what are you experiences, I truly want to know.