Surviving Without Support: A Plea for Help
I am a 25-year-old woman with multiple disabilities that prevent me from transferring independently. I rely heavily on assistive devices, using a custom power wheelchair and a hospital bed at home, making it impossible for me to sit up on my own or manage daily activities without help. My partner, who has been my caregiver for the past three years, must undergo a week-long evaluation at a rehabilitation facility. This is necessary to maintain his income source, which is critical for both of us. Unfortunately, I have faced repeated denials for additional personal care assistance hours, forcing me to rely on a home nursing team. Regrettably, the nursing service available to me is abusive; it has caused me injuries and infections. Their failure to effectively assist with my daily living needs coupled with inappropriate and unwanted physical contact has led me to refuse their care altogether. We sought temporary accommodation at a nearby nursing home where I have previously stayed while my partner attended family matters. However, our application was rejected by the municipality. Their reasoning was that I hadn’t received any home nursing support in the past year, making them doubt my need for temporary residential care. They seem to believe that I can manage alone at home, despite only receiving limited, undesirable visits from the abusive nursing team. This situation fills me with dread. The thought of enduring a week without any support is overwhelming. My past experiences of being touched without my consent by numerous individuals have left me fragile, and I fear I will reach a breaking point. But my partner’s income cannot be jeopardized; he must go to this evaluation. The prospect of being left alone terrifies me, as I am unable to obtain food or water, let alone handle basic needs like toileting or repositioning myself. I find myself questioning the grim reality of surviving without these essential supports for an entire week. Will I endure this? Is it possible to live through such an ordeal? Amid this uncertainty, I’m seeking assistance from someone who is advocating on my behalf to persuade the municipality to reconsider their decision regarding the nursing home stay. Yet, I know I cannot solely rely on this hope, and I desperately need a backup plan. The idea of death is not something I accept lightly; I have dreams and aspirations for a better future for myself and my partner. I refuse to let this be the end of our journey together.
Answers (1)
6/17/2025, 11:31:08 AM
OpenHealth AI
I'm truly sorry to hear about the incredibly difficult situation you're facing. It's understandable to feel overwhelmed given your reliance on support for daily activities and the distressing experiences you've had with care providers. Let's break this down to help you navigate the immediate challenges and explore potential solutions.
Main Points:
- You’re facing a week without effective support due to your partner's rehabilitation.
- Abusive past experiences with home nursing teams have heightened your concerns.
- You’re seeking alternatives and support advocacy to reconsider care options.
Explanation:
It’s clear that your situation involves significant emotional and physical stress. Living independently with multiple disabilities is challenging, especially without adequate support. It's imperative to prioritize your safety, comfort, and dignity, as well as explore ways to find reliable assistance.
Next Steps:
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Immediate Support Network: Reach out to family members, friends, or community members who might be able to help you during this week. Even if they can assist for a few hours each day, it can significantly ease the burden.
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Advocacy and Resources: Continue to work with your advocate to challenge the municipality’s decision regarding nursing home care. Gather documentation from your previous experiences with home nursing care (e.g., any incident reports, injuries) to highlight your need for assistance.
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Emergency Plan: Prepare an emergency plan for the week when your partner is away. This could include:
- Emergency contacts: Share your situation with trusted neighbors or friends so they can check in with you.
- Communication tools: Have a phone or messaging app readily available to reach out if you need help. Make sure it's charged and accessible.
- Home modifications: If possible, make adjustments to your home to make it temporarily easier to manage without aid (e.g., have necessities within reach).
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Local Community Services: Research local charities or volunteer organizations that may offer assistance to individuals with disabilities. They may have programs for temporary support.
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Define Basic Needs: Write down a simplified list of your most essential daily needs (like meals, medications, hydration) and explore ways to ensure these are met in advance—stock up on easy-to-eat food or meal delivery services if possible.
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Mental Wellbeing: Consider using relaxation techniques to manage anxiety, such as deep breathing exercises or mindfulness practices. Engaging in activities that uplift your spirits, like listening to your favorite music or watching comforting shows, can also help during this tough time.
Remember, you're not alone, and advocating for yourself and seeking help is a courageous and essential part of navigating this difficult time. Focus on what you can control and take one step at a time. Please let me know if you'd like more specific resources or support options.
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