Balancing my life vs. my child’s: Until my dying breath…
This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!
I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.
Families make hard choices all the time
All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.
What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.
Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.
First Sign of Growing Old
I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.
BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.
I consciously chose my needs over my child’s.
I’ve had pain before, sure. But that has never stopped me, so why was this time different?
What was I thinking?
* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…
* Aaron goes every three months and didn’t have any major issues…
* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…
* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…
* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.
* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…
* Going to the doctor takes a full morning…
* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….
* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…
* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…
* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…
* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….
I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? 🙂 But, like most people, I think our conscious run streams of pros and cons with every decision we make.
Second and Third Thoughts:
I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.
So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?
I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.
Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?
We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?
There is a huge difference between providing “care” and “caring”.
Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?
Keep Climbing: Onward and Upward
All my best,
https://climbingeverymountain.com/inclusion-for-moms-sisters-of-the-heart/ BTW: Lori Foster 2013 register now.
I have two children of my own and I feel the same way you do. I often ask the same questions will that person care for my children the same way that I did? I believe that it is the mothers instinct to wander. We all know that there is not a way to stop us from aging but maybe you can keep trying to find someone you trust and care for to care for Aaron.
I also agree with you when you said that there is a difference between care and caring. I thought about that and I think I would want someone caring for my children then just care for them.
HI Luecreasia, You are right, there is no harder job than being a mother and having to make tough choices about child care. Should I, would I… is this person competent, loving…
Thanks for adding your voice to the conversation.
Maybe re-examine how your doctor is helping or not helping Aaron yearly. Just like you would with car insurance and financial investments, write a list of what you want to see Aaron accomplish (within reason of his ability) and measure the effect the doctor is having toward your goals. We as parents take time to work with our children and help them work toward being the best they can be, no doubt. But, how is your doctor helping you? Have you made your expectations clear to them or discussed your worries?
I read Jon Morrow’s post yesterday, On Dying, Mothers and … (can’t remember the full name). His mom was right. Sometimes we have to get in people’s faces and keep asking questions until they reply with an answer. If you have questions, ask. You have a right to, especially when it comes to your son.
I have to take my daughter to her counselor every two weeks. It is an hour and a half drive. I had to ask the counselor if we could do it once a month instead. I talk with her about my concerns with Scarlett. She responds with advice and actions I can do to help her immediately. That’s why I make the drive for Scarlett to see her every two weeks. She keeps me informed and I know Scarlett is advancing in progress because I see it. It doesn’t all come from the counselor, but her advice helps a lot!
I also make a list of what I want to see her accomplish and measure her counselor’s effectiveness. I don’t let her know I am doing that, but I believe a yearly check-up is necessary. Hope that helps and thanks for sharing. I definitely need a break sometimes too!
Hi Gabrielle, thanks for your thoughtful reply. Sounds like you and Charlotte are also in the middle of the medical tango.
You raised some great points. I like Aaron’s doctor a lot and don’t usually mind the long trip. I usually have some questions each visit so every three months works out okay.
Guess this week has required a look at my own mortality and vulnerability. Mom’s always think they can protect their children and I guess this decision was just a hard one.
Gabrielle, Hope you will stop by and add to the discussion. I hope to have a subscription app in place by next week. Good luck to you and your daughter.