Caregiver vs. Wife, by Karen

When the nurses at Shock Trauma in Baltimore told me that I would need to save my energy for caring for my husband later, I didn’t fully understand what that would entail. In the Spring months following Jim’s accident and even when we first got to Shepherd, I hadn’t yet accepted that Jim was quadriplegic.

I didn’t fully begin to learn about quadriplegia and the specific health concerns and care coupled with participating in Jim’s care until he got in to in-patient at Shepherd Center. As I began to learn hands-on from the RNs and the Nurse Techs at Shepherd, my title and place in Jim’s life, changed.  I was referred to as his Caregiver and he as my Loved One (who suffered the spinal cord injury).  While this was true, it was also disturbing and unsettlingly not normal — at age 39 —  to be thrust into this role at such a young age. On medical and insurance forms, I was still listed as his wife but in real life, I was his caregiver. I was his wife on paper but not for real anymore.

“I am his wife, dammit, and he is my husband, not my patient!” I would think angrily to myself.

When Jim and I were in in-patient and lived in his hospital room, I had relief and much assistance from the day shift and the night shift.

Then we left in-patient care suddenly, and two weeks early, at Shepherd to deal with a family emergency in Pittsburgh and I was caring for my husband on my own full-time (in his Mother’s inaccessible home made as accessible as possible by family and friends, but that is a whole other post).  I was caring for Jim full-time even when we went back to Shepherd for their intensive Day Program and we lived in a fully equipped and accessible apartment connected to Shepherd as part of their family housing for patients and their family members who live 50 miles or more from the hospital.

It was an intense 24/7 full-on, no break caregiving job when we got back to Shepherd because there were no family or friends to help Jim (or me) like there was when we were in Pittsburgh nor the trained round-the-clock assistance or break (especially the night shift) of his in-patient stay.  We were on our own and I was to be a full participant in learning his therapies, doing them with him each day, being watched and re-trained on how to do his personal care again to ensure I was doing it right and offered tips on how to do it better and easier, all while running a household, and doing ALL of Jim’s personal care and assisting him in every way while WE (not just he) was in their Day Program.

During this time I definitely no longer felt like a wife but instead, a nurse on a never-ending shift because caregiving doesn’t end when you both go to bed at night.  Correction, when I take the time to get him into bed (which is just as much of a routine as the morning one) and then I rush to get myself into bed so that I can drop off to sleep knowing that I’ll be up again in few hours unless he wakes me sooner from sore arms or muscles and then I’ll turn and/or move him (because he cannot) and adjust pillows as needed, sooner rather than later.

When I awake to do the middle-of-the-night routines, I’ve got to be awake and focused enough to do these tasks safely and correctly, and then go back to bed and drop off to sleep only to get up and do it again once or more before waking up for the day and the intensive morning routine rolls into the busy day ahead.  We learned to plot out our breaks in his/our schedule to include each of us getting our own time alone for meditation and reflection. For we both required that necessary break from one another.  Though we are a happily married couple, 24/7 togetherness is not healthy. Especially given our new dynamic.

When one thinks of caregivers, you typically think of caring for an aging family member prior to placing them in a skilled nursing facility. Caregiving could also mean parenting a child except that typically when you parent a child it is planned and not a surprise – you are a parent who takes care of their child.  Even a surprise pregnancy affords you up to 9 months to plan for having a child.  Also, with a child there is the usual and expected progression of normal child development and growth – the not sleeping through the night phase, the sleeping through the night phase, the learning to crawl and then eventually walk, and feeding and dressing oneself and on and on with the milestones.  Even though there is a high learning curve, surprises, expenses, and exhaustion, etc. that come with having and raising a child, again, it is planned and known, for the most part. And there are a plethora of people reproducing and having children so the peer support surrounds you.

An accident isn’t planned. A spinal cord injury and returning function (or not) can only be worked-toward and not planned for. The expenses and the care required are very specific, complex, and astronomical.

The only way to plan ahead is to look at the day-to-day.  What I mean is, I cannot assume that Jim will regain some or all of the function in his hands in the coming months, or ever, therefore, I have to plan on his not regaining this particular function and plan to do all of his personal care and assist him with daily living as well as hire someone (to help me when I cannot be around) who can. I cannot plan for when he will graduate to being able to using a manual chair versus solely using a power chair so we need an accessible van RIGHT NOW to take him to and from his doctors and physical and occupational therapy appointments.

We’ve recently hired a personal care attendant because I have to work full time and I cannot work full time and earn my much-needed salary and care for Jim full time, too. Along with having the personal care attendant in our lives (a true angel dropped upon us, I tell you) as well as amazing friends who’ve also stepped up to the plate to help provide varying levels of care for Jim, I am able to work full time away from the home, in the office, therefore the balance of wife vs. caregiver is restored to a normal, more healthy level.

It’s not all on me, anymore; though I do resume caregiving duties upon return from my full time job much like working parents.  Also, I am his primary caregiver in that I am key in helping him to not only care for him but manage his care (to include ensuring our hired personal care attendant is doing what she is supposed to be doing).

Since I’ve begun caring for Jim in late April/early May, I haven’t slept a full, uninterrupted night’s sleep and I cannot plan that that will ever occur so I have to pace myself during my waking hours as well.

I read somewhere that caring for someone with an ongoing, chronic condition is different than caring for someone who is terminal.  At the risk of sounding heartless (and I am trying to prove a point, quite the contrary), with a terminal situation, there is an end in sight, so to speak.  There are phases of care that lead to its inevitable end.  Since Jim is quadriplegic, and there is no cure for spinal cord injury, nor promise of return of function or when that will occur, he will require a lifetime of care.  Since I am his primary caregiver, I must look at caring for him inevitably, as a marathon versus a sprint.  I must pace myself, meaning, hiring, securing, and asking for help as well as encouraging him to do and be more independent by not helping him. The alternative could cause me to burn out and become ill which would not serve Jim well at all.

I read that another wife whose husband is also quadriplegic had to come to terms with her husband’s new status as a quadriplegic as “divorcing him in my mind, and choosing to marry him again on new terms.” So, I am learning and I am taking action so that I can continue to enjoy my husband, my marriage, without being overwhelmed as well as to take much-needed time for myself.

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