Caring for Katie at Home—One Big Roller Coaster Ride: Katie’s Story, Part Eighteen

Caregiving for Katie is one big roller coaster ride.

As of last Monday, Katie has been home for six weeks.  I would like to report that everything has worked out and this care plan is now sailing smoothly.  But since most of you are probably caregivers, you already know that there’s always a problem to be mitigated just around the next bend—especially in a scenario as complicated as Katie’s.

Ironically, even improvements bring with them another glitch.  When I visited Katie on Tuesday, she was especially quiet and blue.  When I asked her about it she said, “I’m not sure I will ever walk again,” and, “Every day is the same as the last.”  I asked her if being home was better than living in the nursing home and she replied, “Oh, yes!”  But, because Katie is much more aware and much more expressive she is also recognizing the profound extent of her limitations, unlike in the nursing home where she just slept through time.

On Tuesday, Sam said that for the past three days Katie had been crying out again.  He doesn’t feel that he can stand it if she doesn’t get a handle on her pain.  But then during Thursday’s visit he reported that Katie had shown improvement again–hence the roller coaster analogy.  The OT recommended that Sam and Gloria give Katie a heads up before each and every movement when transferring and providing personal care.  I reminded Katie that it is her responsibility to maintain control—she is the only one who can do it.  Of course we remember to acknowledge the difficulty of bearing pain and to lavish her with praise when she does well.  

The biggest UP that I can report is that Katie’s room is finished and that Gloria is now able to provide care independently for those times Sam must be away from home.  That alleviates the need for Sam to make arrangements with the neighbors to cover when he is working at his part time job.

The biggest DOWN is really a bummer.  The transfer of funding from the nursing home to the community was supposed to be a “seamless” process.  Seamless, indeed!  There has been NO transfer, so none of the vendors have been paid for the environmental modifications, consumable products have not been provided (such as diapers, wipes and barrier cream), delivery of equipment has been held up (such as the combination shower chair-wheelchair), and most importantly, the agency caregiver has not been paid (because she is living in the home 24/7, all she has received is her room and board).  Obviously, this is causing a great deal of stress for everyone involved, and the problem needs to be rectified soon.

I have a few ideas for dealing with some of these problems, but I will leave that for the next post.  In the meantime, I would sure appreciate hearing any thoughts and suggestions you experienced caregivers may have to offer.

The Ups and Downs of Caregiving. It’s Complicated.