This was one of those weeks when I was extraordinarily grateful for my girlfriends. We all have rough weeks but for caregivers and parents of children with disabilities there are times where it’s completely overwhelming. Those days where you consider whether you can do it anymore and fantasize about packing it all in, assuming a new identify and opening a taco stand on Venice beach (OK, that last part is my particular fantasy.)
But we’re the one who must keep it together and keep the family running. For many parents of adult children with profound intellectual or physical disabilities this means there’s no rest stop in sight – like ever. There are parents in their seventies and eighties who are exhausted still caring 24/7 for their child when at that age their child should be helping them.
In my case, if you don’t follow my blog, my husband has primary progressive multiple sclerosis and my 19-year-old son has intellectual disabilities. I’m one of the lucky ones. My husband has a handicap-accessible van so he can help with the driving duties for my three kids and my son can help with chores around the house.
But this was one of those weeks where it all just felt MASSIVELY OVERWHELMING. Managing the house while being the sole person responsible for bringing home the bacon $$ – well let’s just say that taco truck started looking real appealing.
Fortunately, I’ve learned that at those times I need to reach out to my tribe. A few girlfriends who I can trust with my vulnerability and who get me. The ones who can see me at my lowest and know what to say and how to say it.
Every woman needs her tribe but, for those of us who are caregivers, we every now and then need someone to care for us.
I’m so grateful that over the years my girlfriends have learned all the tips below on how to help me. My tribe has changed over the years with some women being added and, sadly, some leaving either by their own choice or by my recognition that they were not able to offer me the emotional support I needed. It’s critical that the women in your tribe are lifting you up rather than bringing you down.
Whether you’re the woman who needs to cultivate your tribe or you know someone who could use support, here are some critical do’s and don’ts. If you’re the woman who needs support, feel free to simply send this along to your girlfriends if you can’t find the words to tell them:
- Feel like you can’t tell me about your problems. You look at me and think you don’t have the right to talk about how exhausted, stressed, frustrated you are in comparison but you do. And sometimes it’s nice to be distracted from my own issues and focus on you. Numerous studies have shown that by giving back and doing for others it helps us feel better
- Say “I don’t know how you do it.” – neither do I but I don’t have a choice. Pointing this out simply makes me feel more defeated and doesn’t provide me with practical solutions.
- Tell me to take something off my plate – not possible. I have to work, I have to spend inordinate amounts of time at therapist and doctor appointments, PPTs with the school, fighting with the state to get services and financial assistance, advocating for equal opportunities for my child, maintaining my house and parenting my other children which includes being involved in their lives. Not one of these is an “option.”
- Take me out to have fun – when life seems overwhelming sometimes it’s just a matter of a change of environment. Invite me to take a walk, go to the beach, meet for a coffee or glass of wine or go to a concert. Planning is never easy as life always throws a curveball so oftentimes a spur-of-the-moment invite is the best!
- Take charge – there are times when we’re so overwhelmed and exhausted we can’t even think straight. That’s the time to take charge and, rather than asking how you can help, just do it – drive my kids to their activity or appointment, bring over a prepared dinner, help with grocery shopping if you happen to be out or some chore around my house if you have a bit of extra time.
- Point out to me my small successes – it’s easy for me to lose sight of achievements when everything seems like such a struggle.
- JUST LISTEN – there really are no answers and I don’t expect you to have any. I really need to just vent sometimes and then I’ll feel much better. (Women often get that it’s men that want to fix things but just thought I’d remind you.)
- Slap me in the face when I need it – Wallowing in a pity party is never going to do me any good. Trust in our friendship enough to know that I can take and need some tough love. Let me have a day of feeling sorry for myself but then slap me and tell me to “Snap out of it!”
- Stick by me – Sometimes all I need to hear is that I’ll never be alone and you’ll be there for me. The future is scary for me – knowing that you’ll be holding my hand and helping me figure it out is really all I need.