When my mother Janina suffered a stroke, we had the invaluable help of a Geriatric Care Manager to organize her care at home.  We worked with Katherine DeNote, a Registered Nurse with a specialty in geriatric care management, in Spring Hill, Florida.  There are universal lessons from the experience that apply in a wide variety of caregiving instances.

Three main points:

1. As a nurse and certified Geriatric Care Manager, Katherine had access to information on Janina’s chart that we didn’t see, and she had the knowledge and perspective to interpret the information for us.

Shortly after Mom had her stroke, she was transferred from the hospital to a rehab facility.  Mom received a few weeks of physical therapy, but was not improving.  Katherine leveled with us that at 89, Mom was not likely to recover from such a serious stroke.  Katherine recommended helping Mom come home as a hospice patient.  At that point, Mom was bedridden and had lost the ability to speak, but she conveyed to us very clearly that she preferred to go home, and that she was fine with the idea of hospice care. 

The facility recommended that she stayed there for further rehab and treatment.  We might not have had the courage to go against the facility’s wishes and take Mom home without Katherine’s guidance. Rehab facilities may have an incentive to keep patients longer because Medicare often contributes to up to 100 days of skilled care if certain conditions are met.  But for Janina, going home was the right call. 

2) Katherine tailored a plan for Mom’s care at home.

As a family, we did not know how to arrange Mom’s home care. It’s complicated.  Katherine brought in a team from the Hernando-Pasco Hospice to put a care plan in place.  The hospice brought a hospital bed, supplies, medicines, and care.  They really cared.  All free of charge.  A doctor made regular visits to assess Mom’s condition and adjust her meds.   Nurses came to bathe Mom and to turn her and to give her the meds.  Volunteers dropped off prescriptions, and other volunteers cut Mom’s hair. 

The Hernando-Pasco Hospice caregivers were so terrific that we continue to support the hospice in our charitable giving:  we intend to help other people get access to the excellent hospice care that Mom received. 

Katherine also arranged for morning and evening four-hour shifts of caregivers from a local home health aide service, for which we paid an hourly rate out-of-pocket.  We also hired a housekeeper for general cleaning.  We were lucky and got wonderful caregivers from the agency, one of whom especially has become a family friend.  Between the hospice team and the eight hours a day of private home-heath aides, Mom was well cared for until her final months.  At that time, we hired a third shift to turn Mom at night, to preserve her skin and prevent bed sores.  We were able to keep Mom comfortable.

3) As a specialist, Katherine was able to convince family members to accept help.

My mother and my brother lived together after my father died.  That was a very good arrangement for them because they could look out for one another.  (My brother had muscular dystrophy.)

Jim and I were able to visit regularly, and did our best to keep the disarray in check.  Mom and Len always resisted any kind of home help:  they didn’t like the idea of “strangers” coming into the house, which I now know is fairly common. 

But once Katherine came in with a plan, there was no resistance to accepting outside help.  Miracles can happen.

We put in Janina’s room several photos of her as a young woman and mother, and her wedding portrait, which helped the caregivers relate to her as a person.  When new aides and hospice workers met Mom, they always remarked on her beautiful portrait.  She liked that:  it broke the ice and made her smile. 

Mom’s wedding portrait

Of course, Mom was comfortable in her own home.  When Jim opened the window for her to feel the breeze, she could smell flowers from her garden.  A night owl, she could still watch late night TV with us.  My brother Len was her constant companion, a wonderful gift for both of them.  He was her principal guardian.  He let the aides in and out.  He kept an eye on all of her care. 

Janina with Len as a child

Jim and I came from New York every other weekend.  We were able to help Len by handling the steady stream of hospital bills that appeared after Mom’s stroke, and we were able to relieve Len of some of the general oversight.  We also took Len out for dinner, so he could have a respite.  We worked well as a team.  We were able to keep Mom’s experience as pleasant as possible.

Katherine DeNote brought expertise to Mom’s care that we did not have.  We paid her for helping us, but it was well worth it because we could not know what to do without her.  Caregiving is complicated and requires expertise to do right.

We paid Katherine DeNote a “start-up” fee for her initial assessment and the care plan.  The start-up cost is generally between $250-500, depending on where you live and the care manager’s requirements.  We also paid Katherine ongoing hourly fees for helping us operate the care plan.  The ongoing fee is generally between $100-200.  We paid a total of about $1,200 to Katherine for her services over a period of about two and a half months.  Your experience may vary depending on where you live, the care manager’s fees, and the care needs.

We consider ourselves lucky to have had Katherine’s help.  “Worth it” doesn’t begin to describe her value to us.  Without her, Mom couldn’t have been as comfortable because we couldn’t have done it as well by ourselves. 

Katherine and the Hernando-Pasco Hospice really cared about Mom.  They helped Mom be so much happier in her own home with her loved ones than she was in the facility.  We are forever grateful to them.

To find a Geriatric Care Manager near you, search these websites:

https://www.aginglifecare.org

https://www.caring.com/local/geriatric-care-managers

Here are two more good articles on hiring a Geriatric Care Manager:

http://www.huffingtonpost.com/anita-kamiel-rn-mps/hiring-a-geriatric-care-m_b_9191016.html

https://newoldage.blogs.nytimes.com/2008/10/06/why-hire-a-geriatric-care-manager/?mcubz=0