When Care is Needed 24/7
Mom needs more than five hours of care a week and I live out of town. Help! Dad has dementia and is also recovering from a broken hip. My sister can’t leave him alone.
By Pat Irwin
These situations have one common element—in both cases, the family thinks that a large amount of care is required, but only minimal advice and support have been provided. On the surface, it looks pretty bleak, especially for family members who have no care experience. So what are the options? Private care often costs around $25 an hour, which adds up to $600 per 24 hours of care. A preferred nursing home might have a waiting list of six months or longer. And retirement homes might not be able to provide the level of care that’s needed.
So what do families do? Sell the house and move? Use a nest egg?
Or manage at home?
Here are ten very practical tips to help you make the best decisions possible, for yourself or a loved one.
1. Research the amount and type of care being given now. Anyone who has been in hospital lately can tell you that no patient has a nurse sitting at the bedside 24/7 (unless private care was hired). But somehow patients manage to recover and become ready to go home.
Before discharge, ask exactly what medical care needs to be delivered at home. What is essential and what is optional? What can be arranged for in the home? How will a doctor’s instructions be handled and is any follow-up required? Is the cost covered by the provincial health plan, Veteran’s Affairs or workplace insurance? Who will arrange for the services that are necessary and how long will they be required? The discharge planner can be your best ally in making sure as much subsidized care as possible is ready upon discharge.
2. Top up subsidized care with additional services that can be adjusted as needed. Once you have ascertained the extent of care and services required, move to fill in the gaps. Talk to your family and divide up the tasks. Keep in mind that care needs can change over time, so solutions should be scalable. Research community sources of help; these might be subsidized by the province or municipality. Private homecare providers are the last piece in the puzzle. The hourly rate is usually around $20–25/hour, depending on the skill level of the person you hire. Be sure to choose an agency that understands that care needs fluctuate and that can be flexible regarding schedule changes.
3. Assess what’s needed for the longer term. After the initial crisis has passed, walk through the day and see where care and support gaps still exist. Is nursing care okay, but support for daily living—such as meal preparation or laundry—the real issue? You don’t need
a registered nurse for that!
Why do gaps exist? Is your loved one in pain, or are they afraid and feeling vulnerable? Is it a question of adjusting to new physical realities, such as loss of speech and some mobility following a stroke? Or does your loved one feel distress or experience a condition called “sundowning” (where confusion and agitation worsen in the late afternoon and evening)?
4. Determine what care will be accepted. There is no point in setting up care that isn’t welcome. No one likes others in their space, and once a routine has been established and risk factors mitigated, conditions might stabilize and allow outside help to be reduced.
For example, a personal support worker working from noon until 5pm can cover lunch, ensure that medication is taken, do housework, run errands or accompany your loved one on outings and leave supper in the fridge. That, plus a personal alarm, a medical reminder system and home monitoring, could allow you to leave a loved one safely overnight.
If night care is required then that can also be arranged. At night, the caregiver will usually sleep. If he or she is woken up more than three times then it will be considered a working shift.
5. Be creative with support. Recruit family, friends and volunteers for non-medical assistance, such as running errands and friendly visiting. Pay for just the skills that you need—for example, you should hire non-medical support staff for tasks such as housekeeping, meal preparation and companionship.
6. Research assistive devices and technology. Ask your pharmacist about medical supplies or look for a home healthcare store near you. You can also order supplies online. You’ll be amazed at the practical support that is available for hearing, vision, walking, bathing, feeding, medical reminders, personal safety and much more.
Assistive devices may be subsidized by private health plans as well as by the provincial health plan. In Ontario, visit www.health.gov.on.ca and look up the Assistive Devices Program; this can cover up to 75 per cent of the cost of equipment, if purchased from a registered vendor.
7. Look into respite stays. Both retirement residences and nursing homes accept respite stays. For retirement homes, contact the marketing department and be prepared with details on care requirements. Nursing homes will require an application through community services—in Ontario, a Community Care Access Centre (CCAC). Respite services are also available
from community agencies such as the Community Navigation and Access Program (www.cnap.ca) and through care agencies, whose staff will move into the home while caregivers take a break.
Short-term respite stays are an excellent stepping-stone from hospital or a medical crisis back to home. They’re also a great way to experience retirement or long-term care living before making a commitment. Many discharge planners routinely suggest respite as
an interim measure before returning home.
8. Do some math. Having seen the potential expense of care, review the numbers, see what’s affordable for the future. If the funds aren’t there, don’t suggest a retirement residence with “cruise-ship” amenities or build a suite for a live-in carer. If the budget is for a government-subsidized nursing home, start visiting and initiate the application process.
9. Check the paperwork. Are the powers of attorney and other arrangements in order? Is your loved one still mentally competent to assign powers of attorney? Are you aware of his or her financial means and advisors (e.g., doctor, lawyer, accountant, financial manager)? Pull the paperwork together now.
10. Going forward. When the health crisis has passed, evaluate your loved one again. Is he or she more able to cope for short periods alone? Is your loved one still feeling vulnerable, and why?
Speak to your loved one about how he or she sees the rest of life unfolding? Is that vision realistic, in both financial and practical terms? Do you have a plan, and is it realistically staffed and financed? Do you have a good working relationship with all of the essential players? Can you implement your care plans alone or do you need a care manager? Overwhelmed? Try not to be. Take the time to follow each step, and 24/7 will become far more manageable. Good luck!
Pat Irwin, BA, AICB, CPCA, is President of ElderCareCanada.