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.
From the onset, I had a specific idea of the care plan that would be necessary for Katie to be cared for at home. But, I was skeptical that such a plan would be approved.
The plan was based on two major factors:
- The opportunity to use an existing handicapped-accessible living area:
First of all, Katie has an ideal living situation in her home. A number of years ago, Sam’s mother chose to utilize her finances to add a handicapped-accessible living area onto Sam and Katie’s house. They built a large living area with a handicapped bathroom that extended off of the existing first-floor family room so they could provide the assistance needed.
- The ability to get approval for consistent 24/7 care:
Secondly, Katie requires total care, which Sam would not be able to handle alone. He works part time and needs the freedom to come and go without having to constantly make arrangements. Although Sam and Katie have two sons, only one is local, and both have the responsibility of young children. Katie needs one consistent fulltime caregiver, in addition to Sam, living in the home.
At the October 23rd meeting, Katie was relatively alert and able to participate in a limited way. Sam informed the provider that all narcotic medication had been discontinued. The provider assured Sam that they would be able to care for Katie in the home environment. More importantly, another meeting was scheduled for the following week with all involved parties: Katie and Sam, the Area Agency on Aging care manager, the nursing home social worker, the provider, and the prospective caregiver.
At this meeting, Judene and I were also in attendance to provide support for Katie and Sam. When we first arrived, Katie greeted us with a vivacious, “Hi!” We were delighted.
When the Aging care manager outlined the specifics of the Waiver Program’s, “Services My Way” plan, I was floored. It provided more than I had dreamed of in my wildest imagination, such as:
- A 24/7 Service Provider
- Equipment: electric Hoyer lift, customized wheelchair, shower wheelchair / commode chair combo;
- Environmental modifications: ramps, laminate flooring, wheel-in shower modification; and
- Transportation: two roundtrip EMS transportation services monthly for medical appointments.
And if this was not enough to make the day, the provider brought the caregiver they had in mind to look after Katie. “Gloria” has experience working in a family unit. She knows how to use a Hoyer lift. She’s described as being a homebody, having spirit, and being reserved yet warm. We were all most-impressed when Gloria reassured Katie with a gentle touch and calmed her with an uplifting hymn.
One more meeting was scheduled to complete the Public Partnership paperwork for final approval of the plan. The paperwork has now been submitted. The target date for Katie to come home is December 15th. And again, we wait…