When the term "hospice care" comes to mind, many often mistakenly associate it solely with the end of life. While it's true that hospice care can be a crucial aid during the concluding stages of a person’s life, it’s equally important to emphasize the extensive support, guidance, and relief it brings to patients and their families, especially when dealing with Progressive Supranuclear Palsy (PSP).
**Understanding PSP**
Progressive Supranuclear Palsy (PSP) is a rare neurological disorder, leading to difficulties with balance, movement, vision, speech, and swallowing. As with many progressive disorders, the journey with PSP can be long and challenging.
**Hospice Care: Beyond the End**
Hospice care is not about giving up; rather, it's about embracing quality over quantity. Here's how hospice care bolsters those with PSP:
1. **Symptom Management:** One of the primary benefits of hospice care is symptom relief. The hospice team works tirelessly to ensure that pain, discomfort, and other symptoms are well-managed, making the patient’s life as comfortable as possible.
2. **Emotional and Psychological Support:** Living with PSP can be emotionally taxing. Hospice care provides counselling and emotional support not just to the patient but also to their families, helping them navigate the challenges.
3. **Therapeutic Activities:** Many hospice programs offer therapeutic activities that can be beneficial for PSP patients, such as music or art therapy. These activities can provide a meaningful way for patients to express themselves and find joy.
4. **Respite Care:** Hospice offers respite care, allowing families and caregivers a much-needed break, ensuring they remain strong and refreshed to support their loved ones.
5. **Educational Resources:** Knowledge is power. Hospice care teams educate families about PSP, its progression, and ways to support their loved ones better.
6. **Holistic Approach:** Hospice care often integrates a holistic approach, incorporating physical, emotional, spiritual, and social aspects, ensuring all areas of a patient's well-being are catered to.
In the journey with PSP, hospice care acts as a beacon of hope, support, and solace. It's not about the end but about the quality of the journey, ensuring that patients and their families find comfort, dignity, and peace in every moment they share. Embracing hospice care is about choosing a path that cherishes every moment, no matter the challenges ahead.
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4 comments
No!!!!!!!! Sharon, you are not alone and you’re thinking my husband is exactly the same and I am struggling to get help for him. It is ridiculous. Every PSP patient is different. an IV bag of fluids should be an option for my husband every other week and no one will order it. I am beyond frustrated and extremely sad that I have to take my husband to an ER. he may die of dehydration an organ damage before PSP would take him early.
Gigi
Sharon,
Laura Louizos here. I’m deeply moved by the account of your sister’s condition. I wholeheartedly agree with you. Quality of life isn’t solely defined by the absence or presence of medical interventions like a PEG tube. It’s about recognizing the individual’s holistic needs and ensuring they’re met, both physically and emotionally. If the use of a PEG tube can enhance her comfort and ensure her nutritional needs are met, it should be an option. Terminal diseases such as PSP indeed present unique challenges, but that shouldn’t deter us from striving to provide the best possible care for our loved ones. Always trust your instincts and continue advocating for your sister’s well-being. Sending strength and support your way. xx hugs
Laura
Want to go to Hospice since advanced PSP BUT Hospice Nurse will not allow if she needs a feeding tube. If she came to nursing home with a fedding tube they would allow BUT not insert while in hospice??? I do not agree because dehydration and poor nutrition would lead to new problems. Dysphagia is becoming more severe. Most food is pureed diet. Can eat ssofter foods she likes and desires with soeone watching and having her take small bites and sip of liquid in between. She can choke on water or just her own salivia at times Appreciate anyones comment and input on Hospice and PSP patients that n eed a peg tube in the near future. Unable to stand, adjust body in wheelchair, walk wheelchair around room or in hall, chair lift for bathroom and showers, still trying to feed self with great difficulty and spilling most of food. SAd depressiong disease when one is aware of all the happenings.
Sister @last stage alert orientated, coughing, choking with meds and eating etc completely in need of care for all ADL. Spoon spills over when eating, coughs when even drinking water, since May this year unable to stand starting to lean to right even when sitting in wheelchair, changed to full headrest wheel chair when found in reg w/c with head extended back and unable to pull head up on own. Still aware of bowel and urine incontinence but able to use bathroom with chair lift only. Two nurse assist for other care, getting into bed etc. loves all activities at nursing home greets and says hello to staff and residence she knows and remembers names, cannot set cup on table as misses the table entirely. Vision even with prism glasses poor depth perception. Speech more difficult to understand and voice low. Very embarrassed by disease and her inability to do simple things. Had pt and ot for last year and no improvement can follow chair exercises and beach ball toss well. No longer able to walk her wheelchair with legs. Hand clenching. I feel my sister is end stage refused hospice if she needs a peg tube for meds and fluids. If swallowing continues to decline hospice will only do orally dissolving meds for comfort. She is diabetic type two, depression high blood pressure high cholesterol. Hx chemo with biomycin caused lung fibrosis post hystocytic abd lymphoma in 1991. Had positive COVID once. I disagree that hospice cannot accept patient who may need a peg tube soon I do not feel quality of life and comfort care cannot be accepted in PSP when a rare terminal disease that has NO CURE may need a pegs tube. Is it quality of life to refuse fluids and meds to someone who is alert and still able to enjoy and participate in activities confined to a wheelchair in need of assistance for all ADL?.