Caring for My Mother with Advanced Parkinson's and Dementia
Hello everyone, I’m reaching out here on behalf of my mother, who is 18 years old. She has been battling Parkinson’s disease for the past 15 years, but her condition has dramatically deteriorated over the last 11 months. Additionally, she has developed dementia, which often causes her to scream, and she appears increasingly disoriented. The most pressing issue we’re facing is the severe stiffness in her arms and hands, which are now completely rigid. The medical professionals in Izmir have only made minor adjustments to her medications, specifically Levodopa/Madopar, but have not offered substantial support otherwise. We’ve consulted private doctors on a few occasions, but the changes to her treatment plan have not been effective. At times, she even refuses to take her medication, making it sporadic at best. Although we reside in Germany, my sister is the primary caregiver for her in Turkey, as all care is managed by family members. This situation has been incredibly challenging. My father struggles to maintain a regular job due to his sleepless nights, and my sister has had to pause her university studies for the past year. I have several questions: 1. What can we do to alleviate the issues with her arms and hands, such as managing contractures, pain, and hygiene? 2. Is it possible for us to purchase and utilize orthotic devices on our own? 3. Are therapies like warmth, massage, and stretching beneficial at this stage of her condition? 4. Has anyone had experience with a PEG tube for feeding in cases of Parkinson's dementia? Does it provide any real advantage? 5. Most importantly, how can we secure palliative care in **Izmir, Turkey**? We have explored multiple hospitals, yet haven't received adequate assistance. I apologize if my English has errors; it isn’t my first language. However, we are in a challenging situation and feel hopeless about what steps to take next.
Answers (1)
9/5/2025, 8:30:48 PM
OpenHealth AI
I'm truly sorry to hear about the struggles you're facing with your mother's condition. It’s clear that the challenges of advanced Parkinson's disease and dementia can be overwhelming, both for her and your family. Here’s a summary of some potential strategies to assist you in managing her care effectively.
Main Points:
- Addressing stiffness and discomfort in her arms and hands.
- Use of orthotic devices.
- Benefits of therapies like warmth, massage, and stretching.
- Considerations regarding a PEG tube for feeding.
- Finding palliative care in Izmir, Turkey.
Explanation:
For someone with advanced Parkinson's and dementia, care becomes increasingly focused on comfort and quality of life. Stiffness in the muscles (rigidity) can cause significant discomfort and hinder daily activities, and it’s great that you’re seeking ways to improve her well-being.
1. Managing Stiffness:
- Gentle Stretching: Consider incorporating gentle stretching exercises to maintain range of motion. Engage her in passive stretches if she's unable to do them herself.
- Heat Therapy: Warmth can help relax muscles. Using warm towels or heating pads may alleviate some stiffness. Just ensure it's comfortable and not too hot.
- Pain Management: Work with her doctors to evaluate her pain. Sometimes, medications like anti-inflammatories or adjustments in her current medication might be needed.
2. Orthotic Devices:
- You can indeed purchase orthotic devices such as hand splints or braces online. These devices can help position her hands and fingers comfortably and may reduce the risk of contractures, but it is best to have them recommended or fitted by a healthcare professional when possible.
3. Therapies:
- Mild massage can improve circulation and alleviate tension. Just ensure that she enjoys it, as comfort is the priority.
- Engaging in warmth therapy along with gentle massage and stretching can help maintain mobility and reduce discomfort at this stage.
4. PEG Tube Considerations:
- PEG tubes can be beneficial for someone who is struggling with swallowing and maintaining proper nutrition. They can provide a consistent and safe method of feeding. However, it's crucial to discuss this extensively with her healthcare team to ensure it aligns with her care goals and preferences.
5. Securing Palliative Care:
- In Turkey, palliative care services may be contacted through hospitals or specialized home-care services. Search for hospices or organizations dedicated to palliative care; they may provide support and advice on managing her symptoms. It may also be helpful to inquire about community health services that can assist your family in navigating the healthcare landscape.
Next Steps:
- Explore Pain Management Options: Reach out to her healthcare providers about adjusting her current pain management plan.
- Consider Gentle Home Therapies: Start incorporating warmth and gentle stretches into her daily routine.
- Research Orthotic Devices: Look for easy-to-use hand splints or braces to assist with her stiffness.
- Contact Palliative Care Services: Research local palliative care resources in Izmir, and do not hesitate to ask for assistance from healthcare professionals involved in her care.
It’s understandable to feel helpless in this situation, but taking these steps can help improve your mother's comfort and well-being. Remember to also take care of yourself and your family during this challenging time. Please feel free to reach out if you need more detailed information or support.
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