Tips and Tricks for PSP (Progressive Supranuclear Palsy) Caregivers

Tips and Tricks for PSP (Progressive Supranuclear Palsy) Caregivers

1. **Educate Yourself**: Learn as much as you can about PSP. This will help you better understand what your loved one is going through and anticipate their needs.

2. **Adapt the Environment**: Safety is a priority. Make the living space fall-proof by removing obstacles, using non-slip mats, and installing grab bars in necessary areas.

3. **Eye Care**: Because PSP affects eye movements, ensure regular eye check-ups and address any vision concerns promptly. Using special eyewear or magnifying glasses can also be beneficial.

4. **Swallowing and Nutrition**: As swallowing can be challenging, consider thickening agents for liquids and consult with a speech therapist for guidance. Ensure a balanced diet to prevent malnutrition.

5. **Speech Difficulties**: If your loved one has trouble speaking, consider using communication boards, apps, or devices to aid in expressing themselves.

6. **Physical Therapy**: Engage in regular physical therapy to maintain as much mobility and strength as possible. This can help with balance, walking, and general well-being.

7. **Stay Organized**: Keep a diary or calendar for medical appointments, medication schedules, and any observed symptoms or changes.

8. **Emotional Support**: Join a support group or online forum where you can share experiences and get advice from others in similar situations.

9. **Respite Care**: Remember to take breaks. Caregiving can be demanding. It's essential to rest and recharge. Consider short-term respite care options when needed.

10. **Legal and Financial Matters**: Ensure that all legal paperwork, like wills and power of attorney documents, are up to date. Seek advice on financial planning if needed.

11. **Stay Active and Social**: Engage your loved one in activities they enjoy, and keep them socially connected, as this can greatly enhance their quality of life.

12. **Seek Medical Advice Regularly**: PSP is a complex condition, and its progression can vary. Regular check-ups will help adapt care plans accordingly.

13. **Use Adaptive Equipment**: Tools like walkers, wheelchairs, or special cutlery can make daily tasks easier and safer.

14. **Stay Patient and Positive**: Understand that there will be good days and challenging days. Celebrate the small victories and remain patient during the difficult times.

15. **Self-care**: As a caregiver, don't forget about your own well-being. Seek counseling or therapy if you're feeling overwhelmed or depressed.

Remember, PSP caregiving can be demanding, but your efforts make a significant difference in your loved one's life. Seek support when needed, and take care of yourself as well.
Back to blog

2 comments

Carla

I’m sorry to hear about your mother’s situation, Carla. It must be very challenging for you and your family. It’s important to note that I’m not a doctor, but there are various medications used to manage the symptoms of different neurological or geriatric conditions. The most suitable medication depends on her specific diagnosis, the severity of her symptoms, her overall health, and any potential drug interactions.

If your mother is experiencing side effects or if her current medication regimen isn’t effective, it’s essential to discuss this with her healthcare team, especially her hospice physician and nurses. They will have the best understanding of her specific situation and can recommend adjustments or alternative treatments.

That said, some medications commonly used for various neurological and geriatric conditions include:

1. Antipsychotics: These can help with behavioral symptoms in some patients but can also have side effects.
2. Antidepressants: Can help manage mood disturbances.
3. Mood stabilizers: Can be used in some patients.
4. Benzodiazepines: Sometimes used for anxiety or agitation, but they can also cause drowsiness and have a risk of dependence.
5. Medications for Parkinson’s: Like levodopa, can help manage motor symptoms in some conditions.
6. Cholinesterase inhibitors: Such as donepezil, which are used in Alzheimer’s disease.

It’s essential to find a balance that allows your mother to communicate and be as comfortable as possible while also managing any behavioral or movement challenges. You might also consider consulting with a geriatric psychiatrist or neurologist, as they often have specific expertise in managing medications for older adults with neurological conditions.

Remember to always prioritize your mother’s safety and well-being, and keep communication open with the healthcare team.

Laura Louizos

My mother was diagnosed Aug. 2021. Her symptoms are currently bad. Can’t speak, barely can walk or see. She eats very well we feed her. The meds keep her somewhat still, without meds she tends to be able to speak to where we can understand her, but off meds, she tries to get out of chair or want be still at all. What type of meds. Are some of the people using. My mother is very ridged she can move them it takes her a while when on meds. She is on Hospice and it is a very hard and sad life for her. I would like her off the meds so she can communicate at least. But she is uncontrollable. I know there has to be some other drugs that will calm her down with making her so groggy. Any suggestions, thank you. Carla

Carla Walker

Leave a comment

Please note, comments need to be approved before they are published.

PSP Awareness Shop

Make a purchase with purpose. Each sale supports the fight against Atypical Parkinsonism through the Coleen Cunningham Foundation for PSP Awareness!

Shop Now
  • Ice Cream Challenge

    Ice Cream Challenge

    Laura Louizos

    Atypical Parkinsonism Ice Cream Challenge for PSP, MSA, CBD and DLB PSP- Progressive Supranuclear Palsy MSA- Multiple System Atrophy CBD- Corticobasal Degeneration DLB- Dementia with Lewy Bodies  May is Awareness...

    Ice Cream Challenge

    Laura Louizos

    Atypical Parkinsonism Ice Cream Challenge for PSP, MSA, CBD and DLB PSP- Progressive Supranuclear Palsy MSA- Multiple System Atrophy CBD- Corticobasal Degeneration DLB- Dementia with Lewy Bodies  May is Awareness...

  • 🌟 You’re Invited to Tim Talks! 🌟

    🌟 You’re Invited to Tim Talks! 🌟

    Laura Louizos

    Join us this Thursday, April 25th, from 7-9 PM ET for an inspiring session with PSP Warrior, Tim Brown! This month, we’re diving into awareness topics to gear up for...

    🌟 You’re Invited to Tim Talks! 🌟

    Laura Louizos

    Join us this Thursday, April 25th, from 7-9 PM ET for an inspiring session with PSP Warrior, Tim Brown! This month, we’re diving into awareness topics to gear up for...

  • Happy National Volunteer Week!

    Happy National Volunteer Week!

    Laura Louizos

    As we celebrate this special week, we want to extend a heartfelt thank you to all our dedicated volunteers. Your selfless contributions and unwavering commitment have been instrumental in making...

    Happy National Volunteer Week!

    Laura Louizos

    As we celebrate this special week, we want to extend a heartfelt thank you to all our dedicated volunteers. Your selfless contributions and unwavering commitment have been instrumental in making...

  • Support & Advocacy Committee

    Support & Advocacy Committee

    Laura Louizos

    Join us in supporting and raising awareness for those affected by Atypical Parkinsonism, including PSP, MSA, CBD, and DLB.We're thrilled to introduce our new Support & Advocacy Committee!Keep an eye...

    Support & Advocacy Committee

    Laura Louizos

    Join us in supporting and raising awareness for those affected by Atypical Parkinsonism, including PSP, MSA, CBD, and DLB.We're thrilled to introduce our new Support & Advocacy Committee!Keep an eye...

1 of 4