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.
Related Questions
Osteonecrosis Affecting Both Femoral Heads
Greetings, I am a 36-year-old male who recently experienced intense leg pain, prompting a visit to the emergency room. During my examination, the physician ordered X-rays for my hips. Although no fractures were detected, the scans revealed osteonecrosis in both femoral heads, which have unfortunately collapsed. I am curious about the likelihood of requiring surgery in my situation. Any guidance or information would be greatly appreciated.
Male, 37, Experiences Intense Abdominal Pain for Two Decades: Seeking Insights
**Demographics:** 37-year-old male **Physical Stats:** Height 5 feet 10 inches, Weight 175 pounds **Ethnicity:** Caucasian **Main Issue:** Patient reports episodes of acute abdominal pain, lasting between one to two hours. The pain is particularly severe, described as debilitating, originating near the navel and radiating towards the back. Symptoms include bloating, gas, and an urge to defecate, yet relief is not achieved post bowel movement. These painful episodes typically arise in the evening around 7 to 8 PM. Applying heat brings some comfort, and the individual maintains a normal state in between episodes. **Previous Medical Investigations:** - Diagnosed with Gilbert’s syndrome. - Exhibits iron deficiency with low ferritin levels (~11 ng/mL) and diminished iron saturation around 12%. Additionally, serves as a regular blood donor, with the last donation occurring in June. Patient's diet is noted to be low in red meat and animal products. - Autoantibody testing revealed ANA at 1:320 (homogeneous), but the rest of the autoimmune panel (dsDNA/ENA/complement levels) was normal. - Slight elevation in tryptase levels, measured between 13-14 μg/L (the patient’s child has a similar condition). - A solitary lipase value indicated approximately 2.5 times the upper limit of normal, taken around 17 days after an attack. - Recent endoscopy and colonoscopy with biopsies returned normal results, ruling out celiac disease and inflammatory bowel disease; H. pylori test was negative. - Disaccharidase levels are within normal ranges. - Mild elevation in urine porphyrin fractions, although not assessed during an active episode. - Historical ultrasound and MRI imaging were normal. - A CT scan has been performed, with a capsule endoscopy and abdominal ultrasound yet to be completed. Any recommendations? Should I also consider consulting a rheumatologist in addition to my existing gastrointestinal care?
Abdominal Rash Inquiry
Hello, Reddit community, I would like to seek your insights regarding a rash that has appeared on my 6-month-old son’s abdomen. He weighs 6.8 kg and measures 66 cm long, and there are no pre-existing health concerns. About six days ago, after attending swimming lessons, we noticed this rash, and unfortunately, it hasn't improved since. We initially thought it may be a reaction to chlorine; however, he has been participating in swimming lessons weekly for the past couple of months without experiencing anything similar. He does not have a fever or any other accompanying symptoms. We have attempted treatment with antihistamines and moisturizers, but there’s been no noticeable improvement. The rash consists of raised, red bumps. Does anyone have any suggestions or ideas on how to treat this? Thank you in advance for your help!
Unusual Audible Sensation in the Cervical Area
I am a 20-year-old female diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and dysautonomia. For several years, I have experienced a peculiar sensation and sound that seems to emanate from my upper spine whenever I walk. This morning, the sensation occurred again, and it was quite unsettling. With every step I take, as my foot makes contact with the ground, I perceive what can only be described as a hissing or static noise resonating from the back of my neck down through my spine—an experience that’s exclusively audible to me. It’s challenging to determine whether it’s purely a sound, a sensation, or perhaps a combination of both, but it feels localized around the base of my skull. After approximately five to ten minutes of walking, I noticed some tenderness in the same region, but it's possible that this discomfort is unrelated. As far as I've observed, there's no consistent trigger for this occurrence, except that it always manifests while I am walking, synchronized with each step I take. While I wouldn’t consider it alarming, the experience is bothersome enough for me to seek clarity on whether it warrants a consultation with my family physician or if it’s merely a quirky response from my body.
Concerns Over Unusual Stool Color and Consistency
I have a doctor's appointment scheduled for Tuesday, so no need to worry, but I’m feeling a bit anxious about my situation. As a 17-year-old female, I was diagnosed with Irritable Bowel Syndrome (IBS) back in April. Constipation has been a long-standing issue for me, often in varying degrees. However, for nearly the past two weeks, I’ve encountered a troubling issue: my stools have become soft and mushy, to the point that they are very difficult to pass. I find myself having to either manually extract it or stimulate my bowel with my fingers, which I know isn’t advisable. Yes, it’s every bit as unpleasant as it sounds. Initially, the stool color was a light brown, accompanied by some of the usual bloody mucus. But this morning, I was surprised to notice a yellowish-green diarrhea-like consistency. What strikes me as odd is that what I am passing is entirely mucus in texture; it feels like the stool comprises mucus rather than being merely coated with it. This experience is quite unusual for me. I haven’t consumed anything that would typically cause this coloration. This has occurred three times now. Is there an explanation for this condition, or could there be too many potential reasons to pinpoint a specific cause?