In my last Caregiving blog, I portrayed three sets of caregivers soon to be in crisis. Although we want to avoid them, when dire situations attack suddenly, we need help yesterday. Overall, it’s best to provide the safest, most effective plan of care for our loved ones and hopefully avoid crises when we can.
What to do?
Several years ago, my husband and I were like the Joe, Jane, Mom and Pop whom I wrote about in my last blog. Mom was becoming more confused with Alzheimer’s and Dad was struggling. When we arrived for a visit to their home in Florida, I realized they needed home care. Yes, I could have called on a local home care agency to implement a plan of care while I was there. But knowing Dad, that plan would have gone by the wayside in two weeks without someone to direct and monitor it. I needed a Good Samaritan in a lifeboat!
I called Pinellas County Office of the Aging, knowing every county in every state is mandated to have such a resource. I requested names of area care managers because I knew what care or case managers do. Donna Gagnon, owner of Dignified Aging, was professional, friendly, and over time became our long distance heart and hands for Mom and Dad.
Meet Sharon Vincent
Sharon Vincent is Donna’s counterpart here in Rochester. She has had her own care management business, Elder Care Management Services, for 25 years, and also was Director of Social Work for 15 years at Monroe Community Hospital. In time, the hospital developed the Alzheimer’s Family Outreach Program, which Sharon eventually oversaw, to help people in the community dealing with memory impairment and dementia. She also had worked with the New York State Health Department as a surveyor. Let’s just say, she knows what’s what on several levels.
Sharon was kind enough to chat with me about the work she and other care managers do.
Physician Heal Thyself (Not)
As we began to chat, Sharon told me she was now a family caregiver in the process of looking for assisted living for her loved one. Was she in harness doing for herself what she does so well for others?
Nope. It is uniquely challenging to apply one’s training within one’s own family.
“I am an overwhelmed caregiver at this point and swamped with other issues,” she said. She will turn to a care manager colleague because she needs the assistance of someone who knows the lay of the land currently. What facility is open to new residents? Who has closed? Who is struggling? What facility would best meet her loved one’s needs?
As she spoke, I realized that professionals in health care, at some point, must seek the same help they recommend to their clients.
She continued. “A fine professional you may be, but there is a relationship going on there along with other duties. Interruptions can be a huge problem, especially if you are doing all the caregiving, always on call. If you have other agendas, such as your own friends, paid work, other duties, it wears you down. It’s like two jobs. The work of running a household and childcare is not recognized in terms of what it really is. Caregiving falls into that category. You always learn more if personally experiencing it.” She chuckled and added, “I knew a lot more about rearing children until I had one!”
Just what does a care manager do?
A good care manager first does his/her own thorough assessment, not relying only on the assessments of others. Sharon assesses a person in the context of their environment. She calls it P.I.E. (Person In Environment). Where do they live? With whom? What problems co-exist? If there is a problem, does the patient and/or significant others, see it as a problem as well? In other words, soup to nuts, from physical condition to activities of daily living the client may find difficult. Who are the care givers? Is there dementia on board? Is the home a safe environment? “You need to be able to address what is going on,” she said.
Sometimes care managers make referrals to other agencies, such as recommending the Alzheimer’s Association, which has tons of resources for caregivers from classes, to support groups to a help-line.
Other times, the care manager must be the family’s “person” because family lives out of town, like we did. Donna would stop into the care facility where Mom and Dad lived and review their care plans with the staff. (Yes, every patient in every facility must have a care plan.)
For example, Sharon, as the family’s “person,” was entrusted with a client’s house keys after she found temporary shelter for the client. The plumbing problems in the home had made it unlivable. The family empowered her to let in the workers and supervise the necessary plumbing work so the client could return home.
She has taken clients to doctor’s appointments, assisted placement when necessary, and helps deal with issues as they occur. (I remember one evening Dad called us and said Mom had “escaped” from the apartment. “Call Donna,” we said and sure enough she was soon found and safely returned.)
Clearly, a family must be able to rely on and trust their care manager.
How to Find a Good Care Manager
Finding a good care or case manager “is a concern because the term CM or Care Manager is not an officially protected term as a profession,” Sharon explained. “The term is widely used and there is a huge range in the concept of a care manager’s job.” Sharon recommends that caregivers consider the care managers’ backgrounds in health care Where did they work? Does the person have degrees or credentials?
Given her long and successful career even before she started her own business, most of Sharon’s referrals come by word of mouth. Here in the New York State Finger Lakes region, Sharon recommends Lifespan ( https://www.lifespan-roch.org/ ) as a resource to access information about area credentialed care managers you can trust. http://www.eldersource.org/management.html and http://www.eldersource.org/staff.html.
If you are seeking a professional, credentialed case/care manager for your loved one out of state, Sharon advises, “It could be helpful to advise readers about the Aging Life Care Association, (ALCA). (It is) a national organization that lists well qualified professional & credentialed care managers, located throughout the US, via their web site Home – Aging Life Care Association. ALCA also offers information to describe what duties and matters care managers may deal with, and useful questions for families to ask if interviewing a prospective care manager.”
What About Hospice?
Several years ago, I worked for Monroe County in the Home Care Services Unit. I was a member of a team that looked at hospice use in the Finger Lakes area because, unfortunately people delayed hospice until about a week before their loved one died. We thought that unfortunate since hospice offers so much for the client and family at end of life.
There were several reasons for late hospice access, and one of them was that physicians were uncomfortable suggesting hospice. It can be a scary term for the family and one that can make the physician feel like he failed. But why should a client go through treatments that lead nowhere? I asked Sharon how she introduces hospice when the physician has never mentioned it.
“First, the care manager needs to know area resources and not be afraid to drop in unannounced. You can learn a lot in that visit. Is the staff person nice to talk to? Is the facility clean? What do you observe?”
Sharon tells the family about services and resources that can help them when someone’s health is rapidly declining. Without using the sometimes inflammatory term “hospice” she speaks the truth about hospice, using friendlier terms, and stressing that it remains the client’s and family’s choice.
Blessed to be a Blessing
If you need the help of a reliable, professional care manager and don’t know where to begin, first call your county’s Office of the Aging. Ask about care managers and they will direct you to the resources you need. In Rochester, it is Lifespan. It may be another agency in another county or state.
When the going gets tough and you are up to your neck in floodwaters, do consider hiring a care/case manager. These Good Samaritans are lifesavers, as I know from personal experience. (And by the way, I’ve known Sharon Vincent professionally for years. Would that she could be cloned!)