Assistance for My Mother with Dementia
My mother, age 68, stands at approximately 5'2" and weighs around 130 pounds. She is not a smoker but occasionally consumes THC products. Her medical history includes dementia, depression, and hypothyroidism. Her medications consist of: risperidone at 1 mg, naproxen as needed, escitalopram at 10 mg, pilocarpine at 5 mg, rosuvastatin at 10 mg, rivastigmine at 1.5 mg, levothyroxine, and trazodone, which was recently discontinued due to excessive drowsiness. My mom was diagnosed with dementia several years ago and currently resides with my father, who is her primary caregiver. Although we haven't pinpointed the exact type of dementia she has, we suspect it could be related to her father's history with Alzheimer's. I want to address a troubling issue that seems connected to her dementia, which has been ongoing for about 15 years. She frequently experiences intense pain in her mouth, describing it as if sharp pieces of plastic are stabbing her palate. Despite visits to various specialists—including general practitioners, dentists, dermatologists, and ENT doctors—the source of her pain remains undetectable. Tests and imaging have yielded no results. While she does not have Sjögren’s syndrome, she is prescribed pilocarpine to alleviate her constant dry mouth complaints. Due to her advanced dementia, healthcare professionals are becoming increasingly frustrated with her situation. She often forgets her past medical appointments, leading her to try and schedule weekly visits. Each time, she hears the same message: there’s nothing physically wrong and no further assistance can be provided. This dismissal leaves her feeling distressed and leads to her expressing suicidal thoughts, which worries my father and me immensely. We recently connected her with a behavioral health specialist, who recommended risperidone at a dosage of 1 mg per day for her hallucinations. It is still too soon to determine if this will yield any positive effects. We find ourselves at a standstill. I have dedicated countless hours researching potential diagnoses or symptoms that match what she’s undergoing, yet I am unable to find an answer. We strongly believe her current difficulties stem from her dementia, with no identifiable cause behind them. Is there any possibility for her to find relief? The situation is severely diminishing her quality of life and distressing my father. She often sleeps around 20 hours a day, and my father notes that she appears troubled by her mouth even in her slumber. Her food intake has significantly declined; she only seems to tolerate ice cream, as any solid food seems to exacerbate her discomfort. My father is hesitant to leave her alone for extended periods due to the circumstances. I am reaching out in hopes of receiving guidance on potential avenues we could explore. All I desire is for her to find joy in life once more. Thank you for considering our situation.
Answers (1)
2/8/2026, 2:10:33 AM
OpenHealth AI
I'm truly sorry to hear about your mother's challenging situation. It's clear you care deeply about her well-being and quality of life, and I'm here to help you explore potential avenues for relief and support.
Main Points:
- Your mother is experiencing significant distress due to undiagnosed oral pain, which may be related to her dementia.
- Current medications and treatments have not provided satisfactory relief.
- Strategies are needed for symptom management and enhancing her quality of life.
Understanding the Situation:
Your mother's persistent mouth pain, despite thorough evaluations and negative test results, can be incredibly frustrating and distressing. It’s not uncommon for individuals with dementia to experience unexplained symptoms, which can be exacerbated by their condition. The fact that she finds it difficult to eat solid foods and spends a long time sleeping indicates a possible relationship between her discomfort and her overall cognitive and emotional state.
Next Steps:
Here are some prioritized, actionable steps that may help improve her quality of life:
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Pain Management Strategies:
- Consult a Pain Management Specialist: Since traditional treatments haven't worked, consider consulting a specialist who focuses exclusively on chronic pain. There could be underlying neuropathic pain or other pain syndromes that need a different approach.
- Topical Pain Relief: Discuss with her healthcare provider about trying topical analgesics or mouth rinses that can provide temporary relief.
- Diet Adjustments: Given her intolerance to solid foods, continue offering soft and soothing foods like ice cream. Consider blending smoothies with high-calorie ingredients to ensure she receives adequate nutrition without exacerbating her discomfort.
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Mental Health Support:
- Therapeutic Interventions: Since she is experiencing suicidal thoughts, ongoing support from a behavioral health specialist is essential. Explore options like cognitive-behavioral therapy (CBT) or supportive counseling specifically designed for dementia patients.
- Engagement Activities: Introduce enjoyable activities that stimulate her mentally and emotionally. This could include listening to her favorite music, using sensory toys, or gentle physical activities.
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Caregiver Support:
- Educating Your Father: Ensure your father receives education on dementia care strategies, including coping mechanisms for his own stress. This can empower him as her primary caregiver and help him feel less isolated in this challenging role.
- Support Groups: Consider connecting with local or online support groups for caregivers and families dealing with dementia. Sharing experiences with others facing similar challenges can be very reassuring.
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Routine and Structure:
- Maintaining a structured daily routine can provide comfort and reduce anxiety. Familiarity can often help individuals with dementia feel more secure and lessen confusion.
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Monitoring Changes:
- Keep a detailed diary of her symptoms and any changes, as well as her reactions to treatments and new strategies. This record can be valuable for future medical appointments, ensuring healthcare providers have a comprehensive view of her condition.
Conclusion:
While it can be incredibly frustrating to seek answers and find the right interventions, there are avenues to explore that may improve your mother’s quality of life. Keep advocating for her needs, work collaboratively with her healthcare team, and don’t hesitate to seek additional opinions if her distress continues. Your dedication as a caregiver is incredibly important and can make a significant difference in her journey. Please take care of yourself as well throughout this process.
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