Seeking Guidance for Care of Elderly Mother with Advanced MS
My mother, who is 73 years old, suffers from advanced secondary progressive multiple sclerosis. Since she contracted Influenza A in January, she has experienced a significant weight reduction of 16 kg, decreasing from 88 kg to 72 kg. Currently, she struggles with severe swallowing difficulties (FOIS level 5), neurogenic constipation, and worsening shortness of breath. A CT scan has excluded pulmonary embolism and infection, revealing only mild mucus buildup and atelectasis. At this stage, she relies entirely on assistance for all her daily activities, a stark change from her condition in December when she was independent. Despite support measures like Fortimel, her food intake remains low, and she is unwilling to consider a feeding tube or hospital admission. Currently, she is under home care focused on palliative support and remains mentally alert. Her care team includes a dietitian, a physical therapist, and a compassionate general practitioner. In terms of medication, she is not on steroids or immunosuppressants. Recent lab tests are not available, but prior tests from a couple of months ago did not indicate any malignancy as per her GP's evaluation. Our concerns include: - Are there any reversible factors contributing to her weight loss and overall decline that we may be missing? - What strategies could we implement to enhance her nutritional intake or manage her dyspnea? - How can we better understand her prognosis: is it weeks or months? We have observed a steady decrease in her strength and weight on a weekly basis. We are not seeking curative treatments but rather requesting any additional advice or insights. Thank you for your assistance.
Answers (1)
9/14/2025, 7:40:47 PM
OpenHealth AI
I truly empathize with your situation and the challenges you and your mother are facing with her advanced multiple sclerosis and the recent health changes. It’s understandable to seek guidance on enhancing her care quality, especially during this palliative phase.
Main Points:
- Identification of potential reversible factors affecting weight loss and overall decline.
- Strategies to enhance nutritional intake and manage breathing difficulties.
- Understanding prognosis in a compassionate and clear manner.
Explanation:
Weight loss and decline in individuals with advanced MS can often be multifactorial. Factors like swallowing difficulties, reduced physical activity, and changes in metabolism can contribute significantly to weight loss. Your mother's recent flu likely exacerbated her existing symptoms and may have led to diminished appetite.
Next Steps & Strategies:
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Assessment of Reversible Factors:
- Hydration and Electrolyte Balancing: Ensure she is adequately hydrated, as dehydration can worsen symptoms. Consider consulting with her dietitian about electrolyte solutions that may be easier to ingest.
- Review Medications: Occasionally, medications can contribute to side effects such as nausea or decreased appetite, even if not currently prescribed. Discuss with her team if any adjustments are necessary.
- Neurological Evaluations: While advanced MS can cause severe symptoms, ensuring that there are no acute complicating factors (e.g., infections, vitamin deficiencies) through regular check-ups might uncover treatable issues.
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Enhancing Nutritional Intake:
- Small, Frequent Meals: Instead of focusing on large meals, offer small, nutrient-dense snacks regularly throughout the day. Smoothies may be a good solution since they can pack calories and nutrients and can be easier to swallow.
- Flavor and Variety: Explore different flavors and textures that she may enjoy. Sometimes oral nutritional supplements can be fortified with flavor enhancers to make them more palatable.
- Assistance with Feeding: Consider having a caregiver or family member assist her during meals, ensuring a calm environment that can promote intake without rush.
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Managing Dyspnea:
- Breathing Strategies: Techniques like pursed lip breathing or diaphragmatic breathing could help alleviate her shortness of breath. You might consider working with a respiratory therapist within her care team.
- Comfort Positioning: Adjusting her position while sitting or lying down may improve her breathing. Using pillows for support to maintain a more upright position can be beneficial.
- Environment: Ensure her living space is well-ventilated and free of irritants (like strong odors or smoke) that may further compromise her breathing.
Understanding Prognosis:
Predicting the course of MS can be challenging as it varies significantly between individuals. In a palliative context, it’s essential to focus on her quality of life rather than duration. Communicate openly with her GP about the observed decline; they may offer insights based on her unique health journey. They can also help establish short- and long-term goals for care reflecting her values and preferences.
Remember, your mother’s comfort and dignity during this time are paramount. Don't hesitate to reach out for additional support or resources tailored to her specific needs. You're doing a wonderful job advocating for her care.
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We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.