Ten years ago, when Christine Canavan was 25, she opened her home to care for her ailing grandmother, Sally. Canavan’s strong familial ties left little doubt that she could place her “Nona,” or grandmother, in a nursing home.
“I was home raising my family and I just wasn’t ready to put her into a home – I just didn’t trust what was available and I thought ‘I can do better for her myself,’ she said.”
After almost a decade of care, though, Sally’s mental and physical health had deteriorated to a point where Canavan realized she needed more help. Her grandmother was diagnosed with Alzheimer’s disease and she needed a wheelchair to get around.
As well, Canavan and her husband were preparing for a move from Brevard to Ft. Lauderdale, so the couple began researching assisted living facilities that would be close to her new home so she could monitor both her grandmother’s care and health.
“I did my due diligence, I visited a dozen places and had conversations with employees, administrators and residents.”
The home she chose held promise for not only its beauty – it was incredibly manicured, with beautiful furniture, good sized rooms and common areas that were well appointed – but for the promise of care.
“I was assured Nona would be in a semi – private room because I was afraid of her being alone – she required assistance to get back and forth to the bathroom because she could not walk and she had a history of falling.”
Canavan said she asked specific questions about care, procedures and notifications. She advised staff that her grandmother’s dementia sometimes caused her great confusion and, at times, she was prone to calling out for help even when someone was in the room with her.
Administrators at the home assured her that her Nona would receive the best of their medical and emotional attention and that they had dealt with issues like the yelling and falling while caring for other dementia patients.
Then they told Canavan not to visit for one month because it could interfere with a smooth transition into the new facility for her grandmother.
“I should have listened to my instincts when they told me that – something seemed ‘not quite right,’ but I thought ‘they are the professionals and I have to trust that they know what they’re doing.”
Canavan left the facility and went about the business of moving her family, placing calls to the facility every day to check on her grandmother.
“I was told she was fine, that she was adjusting and I was counting the days until I could visit her, she said.”
Still in the process of relocating, Canavan decided Mother’s Day, 2004, would be a good time to visit. Her grandmother had been in the facility for 26 days, close enough to the month wait she’d been asked to observe by the facility’s administrators.
“I walked in the lobby of this building and I noticed an old lady slumped over on the couch, but I walked right past her not even thinking it could be my grandmother. “I couldn’t find an employee from the facility anywhere around, so I headed back out through the lobby and took a closer look at the woman on the couch. I realized it was my Nona,” Canavan said with tears welling in her eyes. “She was completely out of it – a mess. Her hair was unkempt, she was drooling and her eyes were hazy, I don’t think she was even aware I was there with her.”
Though her grandmother had never taken more than a baby aspirin in all the years before being admitted to this home, she was now on a cocktail of six separate medications, including sleep aids and tranquilizers that were prescribed after her admission and without notification to family contacts.
Canavan began yelling for help when, after propping her grandmother up against the couch, she felt a series of knots and stitches in her grandmother’s head.
“I was told she had fallen, cracked open her head and been taken to the hospital for care, without even a phone call to let me know what was happening.”
Canavan’s husband, Michael, was only 10 minutes away, already living in the family’s new Ft. Lauderdale home. He never heard from the facility during the accident though he was listed as an emergency contact and called the facility regularly to check in on his wife’s grandmother.
“I was hysterical, she said, and it only got worse.”
Canavan decided then and there to remove her grandmother from the facility. She took her grandmother to her room – a room, she discovered, that her grandmother had been staying in alone despite assurances to the contrary – to begin cleaning her up.
“I went into the bathroom to get a washcloth and I saw a bar of soap with teeth marks in it. I started getting hysterical, calling for my husband and crying.”
Canavan confronted hospital staff, who told her Alzheimer’s patients sometimes eat soap in their confused state of mind.
Right, my grandmother who can’t walk, who can’t even get out of bed without assistance, went into the bathroom that was 15 or 20 feet away and picked up a bar of soap and clamped her teeth down on it. This wasn’t soap that had been nibbled at or licked, it had been shoved in my grandmother’s mouth,” she said.
Canavan believes her grandmother had been yelling and staff at the facility used the soap to try to quiet her down.
“She had red burn marks around her mouth, bruises all over her body. She had been mistreated and mishandled and abused.”After documenting the incident with her doctor, 17 counts of neglect were filed against the facility but the case never made it to court.”Lawyers told me that it would be a long, costly battle and chances were slim that I would win. I was so disgusted that this system, which is supposed to help seniors get through the last days of their lives in comfort and without fear or pain, with dignity, could work this way.”After more research, Canavan found a facility called a “Small Care Home,” that she wished she had known about before placing her grandmother in a larger group facility.
“These facilities are monitored by the state and have specific requirements about patient to caregiver ratios,” she said.
Additionally, the homes provided more intimate, family contact with familiar comforts like regular mealtimes and cozy surroundings, Canavan added, noting that the cost of homecare was about half of the $5,000 monthly rate charged by the home where she originally placed her grandmother.
“The staff at this new home was completely dedicated to helping my grandmother remain comfortable and happy and she did so for two more weeks until she passed away,” she said.
There are lessons to be learned from Canavan’s story.
Gwen Ledene, a Geriatric Care Manager with clients in Central and South Brevard, is a licensed professional who specializes in assisting the elderly and their families in meeting long term care needs. Her background as a Registered Nurse for a home health care facility uniquely enables her to address medical issues on behalf of her clients while working within the confusing and ever-changing requirements of the health care and insurance systems.
“The first thing to do is assess the needs of the elder client,” Ledene advises. This means getting to know what their wishes and needs are before something critical happens.
Ledene also suggests organizing important medical, legal and family documents in an area where they will be easily accessed should something happen.
“You don’t want to wait until a crisis and then be forced to make decisions hastily and without understanding what’s important to your loved ones,” she said.
Canavan agrees and in 2005 created a similar business providing senior placement services called “A Granddaughter’s Promise”.
“I created this business to help others in the situation I was in and so that my grandmother’s experience would not be forgotten,” she said.
Armed with knowledge from her own experiences and from ongoing research and countless volunteer hours at care facilities throughout South Florida and Brevard, Canavan only refers clients to facilities she has personally screened.
“I go through each facility with a fine-tooth comb and check on safety, nutrition, cleanliness, grooming and toiletry, transferring and transportation, physician contact and organized activities. I make sure each client is placed in a nurturing environment that is responsive to their specific physical and emotional needs and I provide ongoing contact with information to caregiver families.”In addition to acting as advocates for their clients, care managers like Canavan and Ledene also check regularly on clients to make sure the level of care promised is being maintained and delivered.
“Some of my clients are from out of town and they don’t know what’s available here or how to help their parent, who needs specialized services or medical treatment,” Ledene said.
“I do what anyone who has the time and knowledge would do for their own aging family member,” she said.
For information on Compassionate Management Care, call Gwen Ledene at 321-427-9067 or visit online at www.cmcbrevard.com.
For information on A Granddaughter’s Promise, call Christine Canavan at 954-839-4889 or visit online at www.agranddaughterspromise.com.
Gwen Ledene owns and operates Compassionate Management Care, a Brevard-based elder care management service. Here are some of her recommendations for dealing with elder-care issues:
FINDING THE RIGHT WORDS
•Discuss sensitive topics and issues when you’re calm, rested and can talk without interruption
•Use statements that are not judgmental
•Phrase your concerns as questions whenever possible to allow your parent the opportunity to express their wishes or make choices
•Try to focus on the concerns of your parents by carefully listening to what they are saying
•Respect their decisions and if you don’t agree with them, ask questions to help them decide whether their decision is really best for them
•Leave the conversation open and allow your parent time to digest and react to your concerns
ORGANIZING PERSONAL INFORMATION
•Make a master list of important phone numbers, medical history, medications and allergies
•Keep a notebook with you at all times to jot down concerns, questions or phone numbers
•Keep a calendar to record all appointments
•If you plan on accompanying your parent to an appointment, confirm first
•Have all relevant information and questions ready before you make phone calls
•Make copies of important applications and receipts
CARING FOR YOURSELF
•Take care of your own physical and emotional well-being
•Respite care is oftentimes available free of charge for caregivers – research local offerings and take advantage of them
•Ask for help
•If your employer has an Employee Assistance Program, ask about elder care benefits
More Caregiver Resources
In 2000, the National Family Caregiver Support Program (NFCSP) was established by the Administration on Aging (AoA) of the U.S. Department of Health and Human Services (HHS).
The NFCSP receives funds which are allocated to states through a Congressionally-mandated formula that is based on a proportionate share of the 70+ population.
Family caregivers of older adults (age 60 years and older); and grandparents and relative caregivers of children not more than 18 years of age (including grandparents who are sole caregivers of grandchildren and those individuals who are affected by mental retardation or who have developmental disabilities) are eligible for caregiver assistance through this program.
The program calls for all states, working in partnership with local area agencies, to offer five direct services that best meet the range of caregivers’ needs, including:
Information to caregivers about available services;
Assistance to caregivers in gaining access to support services;
Individual counseling, organization of support groups, and caregiver train ing to assist care givers in making decisions and solving problems relating to their roles;
Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities;
Supplemental services, on a limited basis, to complement the care provided by caregivers.
The Orlando-based Area Agency on Aging – called the Senior Resource Alliance – is one of the first resources caregivers in Brevard should contact when help is needed. For information about available programs and eligibility requirements, call 407-228-1800 or visit online at www.seniorresourcealliance.org.
For more information on the AoA, visit online at www.aoa.gov.
A local resource for elder-care is the Florida Adult Daycare Association. For information call 877-342-3858 or visit online at www.fadca.net.