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:
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…
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/
My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?
I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.
I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”
I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,
“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”
In your situation you have an extensive family, so finding consensus will be a challenge. I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy. Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps). If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.
If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need. The report can be made anonymously.
Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.
The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.
WTDAM (me again) comment:
Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.