DETERMINING CARE NEEDS
Stroke affects not only the survivor but the circle of family, friends, neighbors and co-workers whose lives intertwine with them. Navigating care for the long term is incredibly difficult, stressful and expensive. Every survivor’s needs vary according to their individual deficit and incapacitation, length of time with a disability, partial or full disability, length of time to recovery and amount of attainable recovery.
Further, if their deficits are long term or extensive, care around the clock will become necessary. In the beginning, there is spontaneous recovery and for some, it’s difficult to gauge the amount of care needed as they continue to regain abilities. Decisions on care, safety and needs rapidly change as the survivor settles into their baseline.
BUILDING YOUR SUPPORT TEAM
In the beginning, there is a plethora of support as loved ones rally around to help. Six months into the recovery journey, the amount of available help reasonably wanes and a year into it, the survivor finds themself with a small core group of supporters. That support team will find themselves stretched thin as they determine how to balance personal life, their own health, work and family obligations with the needs of their stroke survivor.
This is the most crucial time to find reliable outside help to fill in the gaps that come with long term caregiving. With the pandemic, there was a shortage of available help and the situation hasn’t resolved much. Look to creative and unconventional sources for finding at home help. With a shortage of qualified staff and wait list for getting help, begin by assessing your ability and the needs of your loved one. If they need help with ROM exercises, therapy and ADL’s but you’re overwhelmed with keeping up with meals and laundry, hire someone to cook for you and do the housekeeping. Free yourself up however possible until you can find help with you loved one or you will burn out quickly.
WHERE TO FIND HELP
Word of mouth is still the best referral system but practice due diligence…..make sure the people you hire have a clear background check, pay them on the books and insure there is active oversight from you. Agencies take the hassle of hiring and firing off your plate. They pay the staff and insure they are licensed, pass a background check and have clean driving records if they’re taking your loved one to appointments. Charities, community centers and churches offer low cost or free companionship services. Use that extra time to recharge and attend to your own physical, mental and emotional needs.
IMPORTANT CONSIDERATIONS
Whether private pay or agency hired, check with your loved one privately, discreetly and confidentially; ask them about the care they’re receiving and their satisfaction with it. Do they feel respected? Safe? Is the caregiver doing what is needed and requested? Is your loved one clean, healthy and nourished? Are they thriving or declining? Are there unexplained absences, missing or broken items in the house, do they bring children, pets or guests without your permission?
Watch for signs that your loved one is comfortable, calm and well adjusted and do not dismiss changes in their demeanor or behavior when a caregiver is present. Even if it’s simply a compatibility issue or a break down in communication, your loved one should be happy with their support team and the caregivers surrounding them. They may not know how to relay their concerns so it’s important for you to be in tune, present and connected on their behalf.
It is your responsibility to insure care for your loved one is exactly what you need, that your loved one is comfortable with the level of care they’re receiving and communication is transparent at all times. After all, you’re entrusting the care of your most precious asset into the hands of others.
Brain and Life – neurology for everyday living
National Association for Home Care
Rosalynn Carter Institute for Caregiving
National Family Caregiver Support Program
Dept. of Veteran Affairs Caregiver Resources
Alzheimer’s Foundation of America
The Association for Frontotemporal Degeneration
Dept. of Veteran Affairs Dementia Care
Brain Injury Association of America
Caregivers Resources – a library of resources