Things to consider and what to expect
Much has been said about quality of care, staffing shortages and facility conditions in many of our nursing homes. Considering this, it has become even more important for family caregivers to fully evaluate their options to ensure that they are making the very best choices.
The list of possible concerns is lengthy, in some cases, but often stems from one simple fact, explains Wendy Johnstone, M.A. Gerontology, Director of Programs and Innovation with Family Caregivers of British Columbia. “Families need to be aware that long-term care in Canada is inadequately funded. There are not enough long-term care beds for who need [them]. This places an undue financial and care burden on people in need of care and their families – when they are waiting for placement and after they’ve transitioned into care.”
Time to make a change?
Moving a senior into long-term care often becomes necessary and Johnstone highlights several red flags that make the provision of care a challenge at home. Among other things she suggests: Changing needs: Unscheduled or unpredictable care needs making it difficult to find workable short solutions to providing adequate care. Risks that come with complex needs: The benefit of staying in a home environment outweighs the care recipient and caregiver’s well-being. Caregivers and the care recipient become more at risk of isolation due to the complexity of illness and care needs. Overwhelmed: Caregivers feeling burnout despite periods of respite.
After the move
Problems may not only present themselves prior to a senior’s admission into long-term care, they may also become evident afterwards. Johnstone points out several of these possible ongoing difficulties:
1) Communication barriers: Faced with fewer direct care hours and an institutional setting, caregivers often find it challenging to communicate with staff those all-important care needs, schedules and preferences.
2) Feedback and complaints: People often find it hard too speak up regarding the quality of care without the fear of negative repercussions for the person living in care.
3) Guilt and letting go: Managing emotions such as guilt and sadness that can come with loss. Some caregivers feel so guilty, they end up not taking a much-needed break from their caregiving role leading to compromised health and wellness.”
4) Finding support: Caregivers often don’t know what to do and who to turn to when there are issues. They may have concerns that aren’t being included in decisions around care, changes in medications, etc.”
Family caregivers experiencing any caring, staffing, or management issues with long-term homes will need to speak up – doing so is vitally important for the health and wellbeing of a loved one. Johnstone has several recommendations:
• “In your new role as a caregiver after placement, you may find yourself acting as a voice for your friend or relative. You can contribute greatly by providing staff insight into the needs, preferences, and values of the care receiver. You can help the facility get to know the person you care for … find out the protocol for how caregivers are included in care decisions, what can be expected regarding communication on the person they are caring for and how to give positive feedback, express concerns and complaints.”
•“Caregivers may want to have more input into what goes on at the care home, not just involving your loved one, but in an overall sense. One way to get involved is by participating in the Family Council composed of residents’ family members or friends that meets to discuss topics of interest. Feedback and suggestions coming out of these discussions may influence policies and procedures within the facility or improve the quality of life for residents.” Facility staff can advise family caregivers if, and when, a Family Council is offered.
• “Building a circle of support is crucial. Choose a team of people to support you – emotionally and physically – as well as supports that have practical skills including experience caring for someone in complex care, legal and financial expertise, excellent listener, etc. Reach out to your local or provincial Caregiver Support organization for one-to-one support before, during and after a transition to long term care.”
Among the many important caregiving lessons I learned when caring for my dad was that long-term care staff will provide hands-on care for a placed senior while family caregivers often need to provide the extra emotional care – the importance of which should not be minimized.
Remaining diligent
“Caregivers can’t just walk away when the person they are caring for is in long-term care”, says Johnstone. Family and friend caregivers need to continue their role by visiting regularly, filling care gaps and watching over things. Many caregivers are very capable and yet feel very frustrated and tired, especially during a transition and after placement into care.
The benefits of support are countless and many caregivers say, “I feel less alone, I feel seen and heard, and I feel much stronger and able to go on caring in a new way, now that my family member is in a stable place.”
Yes, the move to a nursing home is a big one for all of you but it may just be the right thing under the circumstances. Of course, there are pros and cons and one size doesn’t fit all but with careful consideration and thought and a little bit of homework, long term care may just be the solution.
Rick Lauber is a freelance writer. He has written two books, Caregiver’s Guide for Canadians and The Successful Caregiver’s Guide.
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