Hi I am new to the typeone forum and my name is Lauren. My brother has T1D and it has now been around 13 years since he was diagnosed. There is a lot to take care of when managing and living with T1D. My brother is on the autism spectrum so he sometimes needs help with treating his diagnosis. My mom helps him out with all of his medical things plus his doctors appointments etc. I have noticed over the last few years that she sometimes gets burnt out easily and maybe just needs a break but it is difficult for her to take one multiple times. What are some ways to help with this where it is not to difficult on my brother who needs help from time to time?
Hi @Lau13 and welcome to Type One Nation. I think this is a really tough one. It is of utmost importance that the caretaker takes care of themselves, even as a priority. That’s an impossible statement for a parent. Can you look into any form of assisted care outpatient so that she can take necessary breaks from time to time?
Thank you Joe for taking the time to reply back. She does take breaks from time to time her and I try to take a vacation at least once a year and she takes little day breaks. I think sometimes it is the kind of burnout that has built from a long period of time simply because she does multiple things all the time and it can be overwhelming at times. I try to help out as much as I can and offer help and for the most part my brother handles a lot. I think what she might get burnout from is accumulated from multiple years and I know my brother probably feels burnout as well.
Hi @Lau13 and welcome to the forum. I cared for my mom the last 6 years of her life. She was mobile and could do a lot on her own, but like your brother needed assistance with some things. I managed her meds, took her to the doctor, cleaned, did some of the cooking - you get the idea. My husband was a huge help but I managed the lions share. Towards the end a medical social worker informed me that she could have “house calls” rather than having to go to a doctor’s office, and that alone was huge. And it was not until she passed (6 years ago, at age 94!) that I discovered there are agencies that exist to take other burdens off of caregivers.
Your brother’s endo, or the doctor who manages his autism, might know of some such resources, or could refer you to a social worker who could put you in touch with ones that do.
Thank you for the reply! I have never looked into agencies or places that could help especially those kinds of services are not as common or readily available where I am. Also my brother does really well with handling most of everything on his own and there are just things like doctors appointments and sometimes needing some help with his medical stuff. He might not be 100% comfortable with just anyone helping him if he really needed it for example going to doctors appointments and such. Thank you again for the reply and sharing your story.
I agree about reaching out to seek information regarding all resources that can benefit someone who may have special needs for support and assistance. I’m not sure where you are, but in the US there are agencies/ government departments, who are trained to help people who have special needs and health issues. Even if your brother would be resistant, I’d work on gradually, adjusting. One reason, is that as parents of adults age, they may become unable to continue as the sole support person for their child. This leaves the person in need and not having a backup support system to help.
Thank you for the reply and support. Appreciate it.