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.
Easier said than done…I’ve got concerns.
Judene and I have picked up our visiting schedule. Sam still feels that Katie requires two person assist—not only for transfers with the Hoyer lift, but also for repositioning and changing diapers and clothes. So we’ve been helping out when he goes to work.
And indeed, Katie is a handful when providing personal care.
Gloria gets frustrated when Katie cries out because of course she doesn’t want to hurt her. But really, it’s impossible not to. I stressed to Katie that she has made good strides (because she cries out much less often) but that she needs to continue to work on it. I stressed to Gloria that she needs to try to disregard the “OW OW OW’s.” She is, after all, doing the best she can do.
I asked Gloria if Katie was the most physically challenging client she has ever worked with. She replied that she had worked with another individual with like-disabilities, but that there was always someone in the home to help her with the heavy lifting. As I said previously, Sam needs the freedom to come and go without having to constantly make arrangements, and that the success of this plan rests on the caregiver’s ability to work independently. So at this point, I continue to:
It would be unrealistic to expect a move of such gargantuan portions to occur without challenges—and even chaos. “It’s really hard,” Sam stated when Judene and I visited again today. And yet, we observed real progress in the midst of the confusion.
First of all, Katie’s living area is in the middle of renovation—new laminate is being installed to facilitate use of the Hoyer lift and wheelchair. The bathroom has been gutted in preparation for converting the entire space into a shower room that includes a commode and pedestal sink. Also, ramps are being built outside to improve wheelchair accessibility. So it’s noisy and busy with the workers coming and going, but the end product will definitely enhance Sam and Gloria’s ability to provide Katie with the best of care.
Secondly, two weeks ago, Sam stated, “I can’t see Gloria being able to transfer Katie alone; it is a two-person job.” He has been arranging for neighbors to help on the evenings that he works. Today Sam was much more optimistic, and said that he would try transferring Katie solo tonight, and if that works, Gloria will try next. Of course they will be there to spot each other and make sure that Katie is safe.
Thirdly, Katie has a home health company that provides visits from a nurse, physical therapist, and occupational therapist. Those services will end soon because it has been determined that Katie does not have the potential to make significant strides toward being able to transfer (let alone walk). However, they have shown Sam and Gloria how to do stretching exercises with Katie to keep her extremities less locked. The exercises will be a part of her regular routine of care, especially since Gloria reports that Katie now cries out much less often.
Most significantly, Katie’s mental and emotional state has improved dramatically in a very short period of time—literally overnight. Through the act of bringing Katie home she has gained some sense of having control in her life. The result: Katie has dubbed herself “Captain Commando.” How great she feels to be at the wheel of her own ship.