By Wendy Johnstone
Mrs. B is 70 years old was diagnosed with Alzheimer’s Disease five years ago. She is on the highest dosage of a “memory pill” and is well supported at home with her spouse. She is very functional and maintains a high level of independence and quality of life. But cracks are starting to show. Three months ago she fell and hit her head hard resulting in blood on her brain and notably, a decline in her memory loss. Her physician felt it would be important to monitor over a few months to see how well she “bounced back”. Mrs. B also presents very well and most times when people meet her, they don’t understand just how affected she is by her memory loss. As she and her spouse went to see her physician today to make some decisions about her medication, a memory test was given. The physician was shocked at how poorly she did. Her spouse wasn’t as shocked. Mrs. B was devastated and was grief-stricken with news of her advancing loss.
A diagnosis of a complex or life-threatening illness brings in its wake a complex decision-making process. Few individuals make decisions entirely on their own. Usually, family members are part of the picture and their interests are at stake, too. Most people are not aware that community health services and supports are available to them too. This concept, with the added complication of having to make decisions for a person who may be cognitively impaired or injured, very ill or frail makes the decision-making process even more important for the family caregiver. Your role to observe and report on the care receiver’s condition becomes essential.
Below are some tips for family caregivers to consider when dealing with “the system”.
Before family caregivers can navigate the range of community services and the health care system, it is a good idea to have a sense of what the person they are caring for needs.
Often caregivers aren’t completely sure. This is completely normal. Very few of caregivers have medical or nursing training or case management skills. Many caregivers are thrown into their roles overnight.
A starting list includes:
- What are the current health problems? What are the prognosis and treatments to date?
- Any medical emergencies recently?
- Is there memory loss? For example, many missed appointments, unopened mail, unpaid bills, scorched pots/pans, inability to recall conversations within 24 hours, etc
- Are there behaviour changes?
· How are they managing daily activities such as:
o Transferring from bed
o Personal care – bathing/showering, toileting
o Getting dressed
o Preparing meals, cleaning, laundry
o Getting about in the community
· What kind of support does the care recipient already receive and who is doing it?
· What is the financial situation? Are there resources for additional services?
· Is a Power of Attorney, Will and Advance Care Plan in place?
Health Care Provider Relationships
The health care system is designed for the people receiving and using services. This doesn’t always include the people doing the caring. As family caregivers, one of the first steps you can do to successfully navigate the health care system is to establish yourself as part of the care team.
It’s important, of course, to get permission from the person you are caring for, to be their advocate or extra set of ears.
You’ll need to formalize your role. This means becoming a Health Care Proxy and/or Patient Advocate. When you go into a health care appointment with the person you are caring, you will need to provide a copy of a Health Care Proxy and/or Patient Advocate form.
Be Prepared for Your Appointment
· List all your concerns and symptoms.
· Prepare a list of questions for the health care provider.
· Take a notebook, list of medications and write down the answers to your questions.
· Clarify any instructions. I.e. what follow up needs to be done, what you should be observing re: improvements or changes, list any care directions then repeat back for confirmation.
Who’s Who in the Community
Many services are provided in the community. Our health care system has services that are provided both publicly and privately.
The difference between publicly and privately funded services is based on the type of service and eligibility. Knowing “who’s who in the zoo” can be tricky to keep track of especially when you or someone you are caring for is receiving help and support in their home.
Mr. D, is a 59-year-old man who is recovering from a stroke he sustained 4 months ago. He is now living back in his home after being discharged from the hospital. He doesn’t have a spouse. He has two kids, both out of town. Mr. D is doing quite well considering his brain injury. He needs some support in organizing his day to day activities and needs some help with reminders.
If you ask Mr. D who helps him, “I have so many people coming and going and I have no idea who any of them are”.
He and his family aren’t alone in feeling this way.
In Mr. D’s case, he was receiving help from a private agency for medication monitoring (specifically his insulin) and he had a foot care nurse coming every 6 weeks. He was also receiving home support from Home and Community Care and outpatient rehabilitation at the local hospital. He also had a provider from a non-profit organization providing navigation services for people affected by brain injury and stroke.
Essential Tips to Stay in the Loop
· It is a good idea to list everyone who is helping you or someone you are caring for, who they work for, what services they provide, if it is private pay, publicly funded, non-profit, volunteer, family or friends and when the services are provided.
· Keep this list handy and in a place that is very visual. Depending on the people/organizations involved and the frequency of services, creating a calendar is a very handy way to organize the list. It is also very helpful for the people who are providing service to make reference to that the list.
· If possible, keep track of who comes to see you, and when and what the service or outcome was. For example, a physiotherapist from the publicly funded system comes to your home to see how safe your home is. Write down their name, title, phone number/email address, what they did and have them write out a few key points from the meeting or attach any information left behind.
· Have a list of questions you need to be answered. Health and service professionals are often quite busy and may seem rushed. Being prepared leads to better outcomes.
· Think about assigning one person as a primary contact person. A family member or trusted friend can also serve as the caregiver’s point person. Coordinating who is doing what and when is critical as it can be overwhelming and confusing for the care recipient to juggle and remember various visits and calls. The primary contact can also relay the information to the rest of the family.
· When a care or service provides makes an initial home visit for an assessment with the care receiver:
o It is best that the family caregiver be present.
o Make sure you are clear about all the services available for the care receiver.
o Ask what kind of support is available to you as the family caregiver.
o Develop a rapport with the provider and inquire about follow-up.
· A very important question to ask yourself as a family caregiver, “What help will I need to continue effectively as a family caregiver?”