Betty, 80, 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 by her spouse. She is very functional and maintains a high level of independence and quality of life. But some cracks are starting to show. About three months ago, Betty fell and hit her head resulting in a concussion and a decline in her memory. Her physician felt it would be important to monitor her over a few months to see how well she “bounced back.” Betty presents very well and most times when people meet her, they don’t understand just how affected she is by her memory loss. At her latest doctor’s appointment, her cognition and memory were reassessed. The physician had to deliver the news on her cognitive decline. Betty was devastated and grief stricken by the news of her advancing loss, and her husband was concerned about what this means for their future.
A diagnosis of a complex or chronic illness delivers in its wake a difficult 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 of what community health services and supports are available. With the added complication of having to help with decision-making for a person who may be cognitively impaired, injured, very ill or frail, the process is even more important for the family caregiver.
In this three-part series, Family Caregivers of BC will share strategies and resources on decision-making and health care advocacy with care recipients with complex and chronic illnesses.
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 sure; this is completely normal. Very few of us have health care training or case management skills. Many caregivers are thrown into their roles overnight.
Taking stock of the current situation of the care recipient is a good starting place and can include:
- What are the current health problems of the person being cared for and for the caregiver?
- Have any medical emergencies occurred recently?
- Are there cognitive challenges? For example, missed appointments, unopened mail, unpaid bills, scorched pots/pans, difficulty with driving, changes in ability to have conversations, recalling conversations.
- Has there been notable changes in behaviour or mood?
- Is the person being cared for still engaged in meaningful activities?
- How is the care recipient managing their daily activities?
- What kind of support does the care recipient already receive and who is providing it?
- What is the financial situation? Are there resources for additional services?
- Are the proper financial and legal documents in place?
- Is the caregiver feeling well-supported in their role? And do they feel they are getting enough time for respite?
Next month, we will provide tips and strategies on relationship building with health care providers.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.
Navigating the healthcare system for a caregiver spouse can be overwhelming! How to begin? Getting connected to appropriate multi factorial needs assessment for the client; devising a plan; gathering and assessing material and financial resources; dealing with family members; building psychological supports ;ongoing monitoring of needs and appropriate accommodation. All this and more can instantly present itself to a spouse who is called upon to support a loved one .
I will look forward to seeing future articles that can address these aspects and more in a challenging environment of under funding and understaffing.
Just adding for now: if you want to build a relationship with care providers , you must know what is needed, what they can do( or not do) and then treat them with respect and care! They are there to help!