In my November 18th post: The Plan, Katie’s Story Part Six, I recounted that when Sam decided to pursue the idea of bringing Katie home I e-mailed the social services director at Aging with the request that she facilitate the agency process. She told me that she was retiring in a few months, and that the nurse (who I really wanted to do the assessment) was leaving the agency in a couple of weeks, but that she would do what she could to help. Because she followed through with her commitment and got the ball rolling at the agency, everything fell into place as I have reported throughout Katie’s Story.
I recently invited this lady to join me for a visit to see Katie. I wanted her to be able to witness how “The Plan” was working (which none of us expected to come to fruition) and how her efforts contributed to the dramatic improvement in Katie’s living condition and outlook on life. She was duly impressed.
I’m betting that what she saw will be a highlight for her whenever she thinks about those last days winding up her career.
At the top of my TO DO list I have added:
On Katie’s Team
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.
Even in my wildest dreams, I did not dare to imagine…
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…
Now waiting for approval of the plan was not necessarily a bad thing. Katie was scheduled to go through a complicated “tendon release” procedure to try to straighten and relax her contracted limbs. It would not be feasible to care for her at home during this time.
Sam had to have Katie transported to a larger city, about 2 hours away, to receive the treatment–which was not available locally, even at the teaching hospital in our area. Over a period of several weeks, Katie’s limbs were stretched and casted a number of times in preparation for tendon release surgery.
The procedure resulted in escalating pain, which was especially difficult during transportation to and from the treatment facility. Because Katie began to cry out continually, her narcotic medications were increased.
On September 12th, while I was away on a trip to visit my daughter’s family and while Sam was away on a long-planned and much-needed fishing getaway, I received an e-mail from Katie’s care manager from the Area Agency on Aging. The care plan had been approved!
Sam was not checking his e-mail, and I decided not to try to phone him while he was on his trip. After a few anxious days, I was finally able to talk to Sam. But my good news was tempered by his disturbing news. When Sam went to visit Katie upon returning from his trip, he was unable to awaken her—she was unresponsive.
And, tendon release surgery was scheduled for the following week…
Katie and I were born in the same year—1948. The thought of having to spend life in a nursing home, potentially for decades, makes me cringe. Especially for someone like Katie who is vivacious to the point of hyperactivity. She is selfless—always helping others. She has raised a foster child. She has done mission work in Peru and on reservations in the Western United States. She has helped friends and neighbors with cancer. She was a caregiver for her mother and mother-in-law. She provided support to David and me when we were caregivers for my mother-in-law. It’s time to give back.
Because of my professional background, I knew that Katie would qualify for a waiver program. I was familiar with a company that provides a consistent live-in caregiver 24/7 at a cost, that although expensive, is about 25% of what most companies charge. But there were two major challenges.
The first was to convince Sam (Katie’s husband) to have two assessments for services—from the potential provider and from the Area Agency on Aging. But, Sam said, “I just can’t see it.” After many months, I finally resorted to telling Sam I just could not continue to visit Katie so often at the nursing home—it was too difficult seeing her living in that environment while he was resistant to exploring all potential options. I told Katie I had done all that I could do—it was up to her to persuade Sam.
The second challenge was that waivers do not generally provide 24-hour care. The plan hinged on convincing a bureaucratic institution to see the obvious: that it makes sense to provide 24-hour care when the cost is equitable to the 10-hours of care from “approved” providers (as well as cheaper than a nursing home).
I’m unsure of the motivating factor, but in May 2014, Sam decided to move ahead with the assessments. He called the Area Agency on Aging to request an assessment. I called the 24-hour provider, who was available to assess Katie the following week. I then e-mailed the social services director at Aging, who was able to facilitate the agency process. Everything fell into place. The 24-hour provider prepared a care plan that was then ready to present at the agency assessment.
We were informed of a new program called “Services My Way,” which was exactly what was needed to be able to care for Katie successfully in her home. However, the program had not yet been administered in this county. So the assessments were complete—the care plan completed and submitted. It was now time to wait…….
An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors. http://www.agingcare.com/
A Question was asked by KAT2014:
My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?
My grandparents can barely walk with walkers, they’re in constant pain, they have a ton of family members breathing down their necks telling them what they should do but at least we got my grandmother on anti anxiety meds (that only helps so much). Everyone is wearing themselves out helping my grandparents but it just angers them. We can’t even convince them to let someone meet with them for an hour just to discuss the idea of getting some profession in home care. Before I was supportive of everyone helping but I’ve changed my attitude. Now I feel my grandparents (and everyone for that matter) are so stressed and upset that everyone needs to just back off. Will one of them end up in the ER or worse–yes. Will their lives be easier if they had prof. help–yes. Will they accept help–NO a hundred times over. I feel they need love in the form of good conversation and distraction from the topics of health and death. What is the right thing to do? Force them to get help when they’re already furious or back off? The entire, huge extended family is miserable at this point. How can we help my grandparents move on gracefully? (they don’t qualify for hospice just yet but they did come by one day)