Sunday, June 2, 2013

Co-Caregiving: Developing into a Team

My husband and I work pretty well as a team.
We first blended our families together (me with my daughter and him with his daughter and son) and raised these three kids the best we could.  They have all turned into productive citizens and wonderful human beings.  Not that their success is because of us but I’d like to think we at least didn’t fumble too much along the way.  It’s likely they won’t need a lifetime of therapy but maybe just a few helpful sessions.  I can’t ask for more than that.
Co-caregivers: Trish and Richard on vacation

Richard and I also worked together when his back pain became unbearable.  He was rear-ended on the freeway by a drunk driver before we met and he dealt with his injuries as well as horrible pain when his son was just a newborn and daughter a toddler.  By the time we met, his pain was manageable (or so it seemed). Shortly after we married, the pain increased considerably (I try not to correlate the two events).

We worked together to get him the right pain management doctor and the right treatment that worked for him and our family.  We went through some tough trials with the various medications he was on (a few which severely adversely affected his ability to get out of bed or be the least bit pleasant when he was out of bed). 

We (and I’m including the kids here because it was truly a team effort from all of us) plowed through and, eventually, found a terrific doctor who installed Richard’s intrathecal pain pump. The amount of medications he had to take was reduced significantly and, although his pain has not completely subsided, it is at a level he (and the rest of us) can live with.  

After seventeen years together (sixteen of those married), we have developed into a pretty good team but it hasn’t always been easy. Heck, I was ready to lock him out of the house plenty of times during the trial and error period with his medications and the kids would have thanked me!

There was a brief stint as co-caregivers during my mom’s illness before she died as well as during the death of my dad.  We have come to realize our co-caregiving experience is neither perfect nor idyllic but it does work for us and we have been able to smooth out the rough spots over the years. All of these experiences have prepared us for our next co-caregiving experience: caring for Robert and, to a lesser extent, Richard’s mom.

Richard was always on board with helping care for Robert when Robert could no longer live independently and, eventually, with bringing him into our home to care for him. We each had our concerns, however.

I worried that with Richard’s back problems, the extra work with Robert would be too much for him.  Robert sometimes ends up on the floor after a seizure and a big concern for me was Richard hurting his back when trying to help Robert get up. 

Richard’s concerns centered on the logistics of Robert being here. Would Robert be able to stay at his Day Program and will transportation be available for him? Will Robert be happy with the sleeping arrangements since we don’t have an extra bedroom downstairs and he has to sleep on the sofa sleeper?  Will there be back-up help if we need it? 

Our first step was to discuss these concerns and then we had to rely on each other for reassurance.  I needed Richard to convince me he would be honest about any increase in his back pain and I had to reassure him that I confirmed his program and transportation would stay the same and back-up care would be arranged.

We both had to rely on Robert to let us know if the sofa sleeper was satisfactory long-term since he already had adjusted to it for short-term visits.  We explained to Robert that he wouldn’t have a bedroom if he lived with us and he replied, “I know; it’s okay.”

We had our answer from Robert and our reassurance to each other which meant only one thing: the real work was about to begin.

In the next post I will talk about what works for us to make co-caregiving successful.  In the next few days, I’ll also discuss the pitfalls of co-caregiving and how to overcome those without too much heartache.

In the meantime, I invite you to tell us about your own co-caregiving experiences and what works (or doesn’t work) for you. 

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