THE TRANSITION to INVISIBLE

Caregiver Isolation

I have been through many transitions throughout Jessica’s life. They seemed ongoing, never-ending, daunting, intimidating and even scary. The most uncertain transition was in 2014 when I left my nursing career and work friends so that I could provide my girls with the stability they needed. Although this decision was exactly the right one for my girls, it lead me down a path to caregiver isolation. Caregiver Isolation is the feeling of isolation and loneliness associated with the caregiving experience. Those feelings of isolation and loneliness can be triggered by a withdrawal from previous habits and lifestyle and feeling as if no one understands the situation. Sometimes, the isolation is literal isolation when a caregiver has around the clock responsibility and feels unable to leave the person in her care.

Several factors contributed to my own Caregiver Isolation  

1. I went into a serious tight budget panic mode which led to me staying home most of the time. 

Stability for the girls meant anxiety about financial survival for me. In the preceding year, I had transitioned from a 40-hour work week on a nurses salary, to a 26-hour work week. Now, I had transitioned to a 26-hour work week with an hourly rate half that of my nursing pay.

I most likely drove Hannah crazy as in my extreme penny-pinching mode I constantly said, “I can’t afford that,” about pretty much everything. I examined every aspect of our household spending to see where it could be carved back. The easiest decision was to cancel our TV service. Then, I found better home and auto insurance rates. The lights were kept off as often as possible, and we even went about 6 months without using the clothes dryer.

No more new clothes and shoes nor eating out regularly. I thought through and planned out budget friendly meals. Every trip to the grocery store took much longer than it used to as I scrutinized every item purchased to make sure I was getting the best buy for my money on each one.

2. During that year, as the months passed, I got increasingly bummed out about the state of my house which contributed to me not wanting visitors at my house.

When the girls and I moved into our own house in 2007, we moved into a home that had not been updated since it was built in 1980. It had original carpet, original counters, cabinets, and those aluminum framed windows that don’t block out any noise and make everything outside sound like it is inside.

I had limited closet space and way too much stuff. Our hectic life had left me so little time and even less mental energy to tackle filing paperwork, to clean or to organize my house. The fact that I had chronic pain from an injury related to lifting a patient compounded the problem with getting things done.

It got to the point of ridiculousness. I did not want anyone to come to my house. I was embarrassed. The environment did not live up to my own expectations and desires. It was not how I wanted to live. I found myself repeatedly explaining to friends, “This is not what I’m used to. This is not okay with me.” I constantly felt like, in general, people did not understand the depth of what was (and had been) going on in my life.

3. Barely getting by was completely mentally exhausting and often led to choosing to decline social invitations.

Not having outside connections since leaving my job, at times I was beginning to feel suffocated and overwhelmed by the restraint of being the constant caregiver. By this point, caregiver isolation was in full-effect. I felt as if I was invisible to the rest of the world. 

Part of that invisibility came from my own choices to not do things. For example, I found myself turning down several opportunities to travel for three reasons:

• The thing I dislike most in life is to burden other people by asking them to help me with Jessica’s care.

• The concept of “what if something happens to me” is very very real to me and makes it difficult for me to choose to go do things without her.

• I know it is hard on Jessica (and those around her) when I go away without her. This I know because I still would sometimes get 20 calls and text messages throughout the day when I was out-of-pocket for the day.

Usually, when I made the decision to not go on a trip, I would feel instant relief almost immediately followed by personal devastation at the isolation I felt.

One thing many parents of special needs individuals will tell you is that we hope we outlive our children. We know they need us. We know no one understands them like we do, no one loves them the same way we do. 

Somehow, someway, something pushed me beyond the overwhelming fear I had of Jess losing me too soon. (Okay…only a tiny bit beyond, but beyond being paralyzed and not living my life because of it.) I had been so stressed out that it was completely unhealthy. An unhealthy me was not a good situation for the long-term care of myself, but most of all for Jessica.

Of course, I already knew that statistically speaking I will probably not outlive Jess. I began accepting the fact that at some point others will have to care for her in my stead. I realized that there is no time like the present for her to start learning that others will care for her when I am not there to do it myself.

I decided to combat caregiver isolation head-on. After MUCH deliberation back and forth (with myself), I decided to travel. I needed to unplug from the 20 phone calls and text messages per day so I planned a top-secret respite for myself. I had never needed a getaway more. After making the decision, I began feeling better immediately. I contacted family and friends and openly told them of how desperately I needed a getaway. I arranged for help with Jessica, even with friends that I only reach out to about every 5 years.

And so I went on my adventure. Off to a rejuvenating experience, selfishly just for me, to reminded myself:

 I am an individual,

I matter as an individual,

and I can have a life too.