How to Care for a Caregiver When It’s Overwhelming

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:

Don’t:

  • 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.”

Do:

  • 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.

What Every Parent of a Child With Intellectual Disabilities Fears

Today I realized that I’m getting closer to the edge of the cliff.  What cliff?  The cliff my son will go over unless mama starts taking charge.

My son Spencer is 19 years old and has intellectual and development disabilities – IDD for short.  If you aren’t familiar with how the “system” works, people with IDD can remain in school until they turn 21.  In addition to academics, they receive Occupational Therapy, Behavioral Therapy, Speech Therapy, Physical Therapy and other support services that help them function in the real world.

And then, at 21, it all stops. They go from a regular routine of school and programs to nothing.  As their parents, we’re left to figure out how to keep them busy during the day so that we can still work (because not working will never be an option for us) and they can still experience personal growth rather than sitting on the couch all day. Within the special needs community, we refer to the time when our IDD children are forced to leave school as “falling off the cliff.”

Depending upon which state you live in, your now adult child will hopefully receive some financial assistance towards an aide to assist him with his daily living, a day program (which simply means activities to keep him occupied), a job coach and possibly residential assistance (which means a small amount of money to be used towards rent.)

This probably sounds great – as if the person is set up for life.  The reality, however, is far different.  For people with profound disabilities the financial assistance doesn’t go very far and certainly doesn’t cover all the support the person needs.  In Connecticut where I live the residential financial assistance is non-existent due to financial mismanagement.  There’s a waiting list of over 2,000 people.  And while it’s great to think they will find a job, how often do you see people with severe disabilities working in offices, restaurants or retail establishments?   Even for a person like my son who is considered “high functioning” but has an extremely limited attention span, talks to himself and is in constant motion when he’s not sleeping, the prospects of finding and maintaining a job are still limited.

Very often people with IDD end up living with their aging parents who still need to support them.  Parents in their 70s and 80s who are caring round the clock for their adult children, some who must be bathed, fed and carried, now in their 40s and 50s.  Parents who are terrified wondering what will become of their child once they die.

For those of us lucky enough to have other children we hope that they will care for their brother or sister but feel equally guilty knowing how this will impact their own lives as they start a family and build a career.

As my son gets closer to the edge of the cliff my main goal is helping him to become independent and a valued member of the community.  It would also be nice for him to have a social life – not really that much to ask for.  This requires me teaching him how to do things that many parents take for granted – learning to use his smart phone to communicate, shopping for groceries and making healthy choices, cooking his own food, washing his own clothes, using public transportation and, eventually, holding down a job.  Sure, the school helps and I’m fortunate that Spencer is in one of the best in the state, but it still requires a great deal of time and effort from the family.  It’s a full-time job.

I’m also fortunate to sit on the Board of Directors of STAR, a not–for-profit organization serving individuals of all ages who have developmental disabilities, as well as providing support services to their families.  I’ve gained more information about how I can help Spencer than most parents normally would.

And so, I’m beginning a series of blog posts chronicling my journey to the edge of the cliff and my goal of building a safety net to keep Spencer from going over.  My hope in writing these posts is that I will not only help other parents who are in a similar position but also enlighten everyone on the struggles parents of children with IDD face.

I welcome thoughts, comments and questions and hope we all can support one another.