Info for patients to understanding caregiver needs

[Rising]

We are living with PLS. Has anyone come across helpful material for patients to understand how the diagnosis also impacts the caregiver? Our loved one was diagnosed several years ago and is angry that the primary caregiver is suffering (also feels immense guilt that their condition is the cause.)

 

[affected]

I can't help you with pointing to specific information, but maybe they would both benefit from joining the forum here?

We can give peer support to them both

 

[lgelb]

The National Alliance for Caregiving and Family Caregiver Alliance have info on their sites, if data is desired, but it sounds like the PALS is aware of the costs of caregiving, maybe more angry at being powerless to prevent them.

Each site also has recommendations for reducing the impact on caregivers. You've seen it before. Ask for help, take respite opportunities, don't take patients' anger and frustration personally. Do the best with what you have, knowing that sometimes you will fall short as we all have.