One day we (me and one of my husband’s long time nurses) were orienting a new nurse. This was her first day in a home care setting. She had worked the last 10 years in a radiology office. She worked all the way through the morning routine including the bowel program. Everything seemed fine that morning…normal.
The nurses were back in the bedroom cleaning up and my husband and I were in the living room talking when I heard a little commotion at the back door. I went to check and found both nurses were out of the house on the driveway. In about 15 minutes, long time nurse came back in, but new nurse was missing. I was a little surprised and asked what happened to new nurse? Old nurse said she had to leave. She was out on the driveway sobbing because she couldn’t believe that people actually lived this way at home. She never came back and never went to another case. She quit the agency that day.
I didn’t know what to say. At that moment I felt so different; like another human was repulsed to live the way we had been forced to live with hospital beds, twin beds, wheelchairs, bowel programs, catheters, urine bags, suction machines, ceiling lifts, shower chairs. Were we really that different? I wanted to start sobbing too.
Dan, you forgot to mention handi-capable. That’s my favorite.
Eagerly awaiting your book too.
Welcome to the community. You definitely are not alone. I’m many more years down the road from you but have experienced most of what you have expressed.
One of the hardest things is something you also noted. It makes me really sad to realize how this role of caregiver has impacted my role of mom. I’m busy, distracted, exhausted, working, and trying to meet everyone’s needs and definitely not doing all I wish I was doing for my kids. Somehow their dad’s needs often push them aside. I hate that part and it makes me incredibly sad. It’s a very fine balancing act, and some days I’m a huge failure. I hope you will keep sharing your experiences with us.
Amen to that BBS. I am a mother of an 18 year old quad and since his injury, two years ago, we have had ZERO help in our home. No skilled nursing, no respite, zilch. Everyone gives me all these places to call, but somehow, we just fall through the cracks and meet none of the specific criteria. What to do??? What to do???
As caretakers, we should be given complete control of the "allotted" funds that medicaid will pay and then we could hire two or three different caretakers for our loved ones for the $$ we pay these agencies. That way, we could hire people for different shifts to cover virtually morning to night or maybe even night to morning. For $100,000/yr, in this economy, i could hire three people to care for my son at different times of the day as needed.
At this point, I am being told that my son doesn't qualify for any grants that pay for skilled care and as the caretakers above have noted, respite workers and family members can't fill the bill. Again...what to do? what to do?
For some reason, your situation more than any other I've read makes me cry. I guess it is because I can identify with you. I never in a million years dreamed that I would have to be a full time caregiver to my teenage son and then in a split second, our worlds change and so do we. I have learned in these last two years to stop fighting it. Not to stop fighting for my son to get better or a cure, but to stop fighting the "change", the identity crisis, the accidents, the interruptions, the clothes and bed changes.....need I go on?
Every day, I pray for the grace to handle my new role and do it in a way that my son deserves, happily and patiently (not that I always accomplish this..we are only human) and I will pray the same for you as well. God Bless You Keith.