Accepting Help from Family and Friends
When Darren was first born, a friend of mine who had already had a child told me two very valuable things I never forgot: never wake a sleeping baby and ALWAYS accept help when it is offered. I followed her advice when Darren and Ari were young, and part of that advice came in handy after Darren’s injury. People wanted to help us SO much, but they didn’t know what to do. Sometimes I didn’t know what to tell them either, but when there was a need, and a volunteer, I always accepted the help.
In the beginning, I did ALL of Darren’s care. This involved turning him every two hours at night, cathing him in the middle of the night to urinate, doing his bowel program every evening, dressing him, stretching him, helping him eat, etc. The list went on and on. I was exhausted, but I insisted on doing it all, mostly so John could sleep as much as possible so he go to work the next day. No sense in us both being worn out. Early on, we did change his bowel program from the evening to the morning and that made a huge difference. When he wanted to hang out with his friends or do something in the evening, it didn’t involve having to be home by ten o’clock to do his personal care. The mornings were so much better for that!
I did hire an aide who would come in the mornings and help with his stretching, showering and dressing. She wasn’t “allowed” according to agency rules to do the bowel program, so I needed to be home and would be called when it was time for me to help with that. But it give me some relief from the other duties, which was extremely helpful. This is one thing I think was extremely beneficial for both Darren and me – to have someone else doing his care. Even though I was still involved, I was now not the only caregiver. With Darren being 18 years old, he did not want his Mom doing everything for him. I know he was grateful for everything I did, but having someone else and trying to do as much for himself as he could was really important. When I speak to parents and spouses who are the primary caregivers, I always try to stress the merits of having outside help. I know that sometimes it is just not possible for financial considerations, but when there is a way for the Moms, Dads, husbands and wives to NOT be the primary caregiver, I think it makes a huge difference. I saw it myself, and I have seen it with other families, too. Even though we think we are the best person to do what we do, others can be trained and learn how to do “almost” as good a job, sometimes better because there is no emotional connection. Granted, we have been extremely fortunate to have wonderful aides, and I know that makes a HUGE difference, but I know families who continue caring for a loved one when there are other options. We are really no good if we are constantly tired, worn out physically and emotionally or short tempered. And all of those reactions are typical given the situations we are faced with. But I believe seeking and accepting help is the key to returning to a “normal” relationship of parent/child or husband/wife.
Other help we took advantage of was driving Darren to and from his outpatient therapy appointments. With a half hour drive, two hours of therapy and at least another half hour home, three days a week, that was a lot of time. We kept a calendar and people we knew volunteered to drive back and forth one day a week or once every two weeks, whatever they could manage. I always drove him at least once a week so I could keep up with his progress, but having time for myself on the other days was a real treat!
During all this time, Darren’s friends were awesome! He had just graduated from high school a month before his injury, so his group of friends was still pretty much intact. Some were going off to college, some were commuting from home, and others lived at college but were close enough to stay in touch. His friends would either come over to hang out, or take him with them wherever they were going. If there were stairs, they carried him. If there were obstacles, they figured out a way. While I worried about how to do this, or how to do that, they just forged ahead and figured things out. The fact that Darren was using a wheelchair really didn’t affect them and what they wanted to do (often much to my dismay!). But they helped him, looked after him and were true friends. And they still are, to this day. Having such a good group of friends has probably been one of the most significant factors in Darren’s life post-injury. At an event a few years ago, he recognized this publicly, thanking his friends for watching out for him, saying “without them, I’d probably be in a ditch somewhere.”