Caregivers need to take care of themselves

[Amanda]

Learning about a spouse, sibling or parent diagnoses of ALS can be devastating. Often times we focus on what we believe to be the inevitable, a quick decline. Many people are now living longer with ALS. We hear about new research and clinical trials more frequently now than we did just 5 years ago. ALS is now in the media and getting more attention and that helps propel research.  Regardless of the advances in research and hope that it brings, caregivers and pALS are still faced with challenges every day. Caregivers spend a great deal of time focused on their loved ones, making sure doctor appointments are made, medication is taken, and making sure that the pALS needs are met.  It is important for the caregiver to make sure they are also taking care of their own needs. This may include eating healthy, exercising, taking breaks, getting out once in a while or just taking a nap. Often times, it takes a great deal of planning for the caregiver to have a break.  Caregivers may also want to consider counseling if they feel it could be beneficial. Sometimes, it is easier to talk to someone who is unbiased and not impacted by ALS.  Counselors can  often see outside the situation and help you come up with some practical and workable ideas.

Do any of the caregiver members go to counseling or support groups? If so, how did you get connected? How do you make sure you are staying healthy and rested so that you are in good shape to help you loved one?

[Hashemih]

Unfortunately in the Gulf countries there is no organization or association or who has sufficient experience of this disease so I do in the search for how to take care of my husband and what is comfortable for his condition

[Dagmar Munn]

Hello Hashemih, It is unfortunate that you don’t have access to local organizations focused on ALS/MND. But with the power of the internet, you can access websites from countries that do have good information. I suggest:

ALS Association: http://www.alsa.org/ Especially this page which lists online resources: http://www.alsa.org/als-care/resources/

MND Association: https://www.mndassociation.org/  Especially this page filled with helpful online information: https://www.mndassociation.org/support-and-information/living-with-mnd/

I am happy that you joined our forum. Do take a look at the Living with ALS and the Forum for ALS Caregivers where we have many topics and helpful resources. Let us know what questions you have and we can post them as new topics 🙂

[Christine Slugocki]

And the Caregiver Action Network that is mentioned in one of Dagmar’s previous posts.  They have both online and phone chats.  I’ve recommended it to friends dealing with ALS, stroke, and Alzheimer’s and heard positive feedback.

[Author]

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