At the time we begin working with them, most of our clients are living independently in a free-standing home, condominium, or apartment. Often, some type of medical crisis results in someone (temporarily or permanently) not being able to transition back to their home without some assistance.
The first transition is often the introduction of private caregivers for a few hours per day, providing enough assistance that a move is not necessary. As needs increase, care could eventually be required 24/7. At that point, a family must determine if it can afford the cost. In our area, the average fee per hour for home health aides is $30.00 ($720 per day).
Live-in companions may be a less expensive alternative, provided there is an appropriate space (a private bedroom) in which the caregiver can live. The cost can range between $280 and $350 per day. An important consideration is whether the caregiver’s duties are such that they can sleep at night. If the person being cared for has needs throughout the night, some families supplement by having a live-in and then another caregiver for the night shift. Again, cost must be considered as this type of care is prohibitively expensive for most families.
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Is Assisted Living a Good Alternative?
Assisted living residences are for older adults or people with disabilities who require help with some of the routines of daily living. Most provide limited nursing care, housekeeping, prepared meals, and structured activities as needed. Ironically, in order to “qualify” to live in these environments, individuals must be able to function somewhat independently.
Assisted living communities vary tremendously across any number of dimensions, so diligent research must be done to find an appropriate match. The cost in Massachusetts is approximately $220/day.
Some assisted living environments are specifically designed for individuals experiencing cognitive decline. These can be a great alternative, allowing an individual to live in the least restrictive environment possible, while remaining safe. Here, too, individuals must qualify by being at a certain level of independence at the time they move in (many families wait too long, leaving more restrictive environments as the only option). In Massachusetts, the cost is approximately $275/day.
Long-Term/Nursing Home Care May Be a Final Transition
This level of care includes a comprehensive range of coordinated medical, personal, and social services to meet the physical, social, and emotional needs of people who are chronically ill or disabled. A nursing home facility may be the best choice for people who require 24-hour medical care and supervision. Some facilities have units dedicated to those who have long-term needs because of advanced cognitive impairment. Unfortunately, there never seems to be enough supply of this level of care.
This is the most extensive custodial care a person can get outside of a hospital and the average cost in our area is approximately $500/day.
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Traditional Skilled Home Care Services — Where Do They Fit?
Skilled home care services consist of nursing, physical, occupational, and speech therapies that can be delivered when someone is living in a private home or an assisted living environment. Such services are a bridge to returning home and are covered by insurance.
They most often begin following a hospitalization, helping someone achieve their maximum level of functional ability as they recover from an acute illness or injury. In the past, these services were known as “visiting nurse care,” but now they are referred to as skilled home care.
What About Hospice Care?
Outpatient Hospice services can be added to all levels noted above and consist of nursing, physician, social work, pastoral care, etc. Hospice care is covered by insurance.
Hospice care can also be provided in a residential facility, although there are few Hospice in-patient beds in the community and the criteria to be transferred to one, and for it to be covered by insurance, are quite strict. Some of this care is delivered in separate “Hospice Houses,” while some is delivered in a dedicated unit in a traditional nursing home.
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As we work with clients regarding alternative living arrangements, we coach families to think about the least restrictive environment in which someone can succeed. It’s important to be highly creative, tapping into all the resources available, including family, friends, and community support.
But don’t stop there. It’s critical to consider the next move and the move after that, as an individual’s status changes and potentially declines. Ideally, you want to minimize the number of transitions, since each one can be incredibly disruptive to an older adult and can contribute to increased confusion as they adjust to a new and different setting. We often encourage making a move before it may be entirely warranted, because in the long-term, it can lead to greater stability and the need for fewer transitions.
As you think about your future and that of individuals in your life who may be aging and need assistance, look to create opportunities for conversations about long-term care choices. The ideal situation is not arranged in the heat of a crisis — it is planned for, affordable, and occurs with minimal disruption.
Finding Effective Ways To Battle Exhaustion While Caregiving Right Now
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Another 3 a.m. I could hear my husband’s slow regular breathing. David had finally fallen asleep in the hospital bed which would be his home for several weeks. I, the sentinel, remained ever alert a few feet away in our bed.
Watchful yet completely exhausted. Sleep had been elusive for both of us during his first weeks home from the hospital. Mostly we blamed the poison ivy. Not so much the pain and discomfort from his broken neck, back, and collar bone.
It was the ultimate cosmic joke that my husband, after catapulting over the handlebars of his bike and breaking all those bones, had landed in a patch of poison ivy. The freak cycling accident had left him both immobilized and tormented by constant intense itching. The poison ivy was running us ragged.
Every night, all night, I would carefully apply calamine lotion to whatever areas were bothering him. There it was – inside his neck collar and arm brace. There it was across his shoulders, up and down his legs, between his fingers. He had no mobility so couldn’t scratch or shift positions to minimize the itching.
And there was always an itch. We played a lot of itch wack-a-mole, especially at night.
The poison ivy, though, wasn’t mentioned at all in the five-minute speakerphone discharge planning session I had with his nurse just prior to his discharge, though it had been a source of torment in the hospital. The nurse quickly ran through her list: his medications; how to change the padding in his neck brace; how to put on and adjust his various braces; how to clean and bandage his torn-up back from skidding down the road.
Also how to help him into or out of bed with his fractured back without really letting him move his torso; how he should stand in the shower when I bathed him – the list was long.
A disembodied voice hurriedly training me to handle so many caregiving tasks I could only try to envision in my mind’s eye because I had not been allowed in the hospital at all because of Covid.
My husband’s accident, hospitalization, and discharge to home occurred when the coronavirus was surging in our area. Consequently, non-Covid patients contended with the same no visitor policies that were in place for Covid patients.
My previous three posts recount my family’s hospital experience during the pandemic and offer tips to navigate a hospital stay and discharge when families are not allowed to visit because of hospital-wide safety protocols to blunt the spread of the virus.
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Virtual caregiving for a hospital patient frankly sucks. It simply doesn’t work. Too much falls through the cracks because a telephone is a poor substitute for being at bedside. For everyone – patient, family, and staff.
Discharge planning from hospital to home-based care is especially fraught when, like me, you are organizing and being trained for complex caregiving tasks via your cellphone. Family caregivers don’t know what they don’t know because they have not been allowed to be at bedside to engage, learn, observe, ask questions, provide comfort, monitor, interact with the doctors and nurses.
In short, when zero visitation is in place, family caregivers don’t have adequate access to communicate and collaborate with the hospital care team. And communication and collaboration are the foundation of fostering person-centered care.
Anyone who has been a family caregiver during the pandemic probably feels the same way I did – that frontline family caregivers have been pushed to their breaking point along with all other frontline workers. We are just largely unseen, unpaid and unprepared.
We are going it alone. And the list is long. Wound tending – check. Follow-up visit planning -check. Equipment and medical device maintenance – check. Medication dispensing – check. Foodservice – check. Personal care needs – check. Housekeeping – always housekeeping – check. Above all providing loving, focused comfort care – check.
Family and friends could only mail a much-appreciated care package or offer support over the phone. No one could come over and help in the meaningful ways, large and small, that friends and families do in a time of crisis. And which you realize when it’s gone.
A risk/benefit analysis entered into allowing anyone to enter our home – even the physical or occupational therapists that David desperately needed. These amazing therapists did come but Covid19 concerns hovered over every therapy session. My brain was a broken hamster wheel twirling between the tradeoffs of real caregiving needs versus exposure to the virus.
And then everyone always tells the caregiver “you have to look after yourself. You need to stay healthy. You have a responsibility to take care of yourself first”. Well-meaning advice, yes. Difficult when you are in the trenches in crisis mode caregiving. And then throw in the pandemic.
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Don’t Forget About Self-Care
Getting a handle on self-care is hard enough in normal times. But our experience would have been different without the threat of Covid. First, I would have been at bedside while David was in the hospital learning from his nurses on a daily basis how to take care of him, his various braces and slings, his wounds, his poison ivy!
I would not have been home alone wondering if I put his neck brace on wrong after changing the inner pads would I paralyze him? I would have been able to meet in person with the hospital discharge planner and advocate for the services we would realistically need once home.
I had no idea how to do that when all my interactions as a caregiver were reduced to a few phone calls. Most importantly I would have been there when doctors rounded or nurses dispensed the medication or physical therapists worked with teaching my husband how to stand again. I would have been able to talk to them, with David, about his medical status and goals of care.
Once home, I would have so welcomed help from family and friends. I would have actually been able to go inside the doctor’s office with my husband for his follow-up visits to be an extra set of eyes and ears instead of waiting outside in the parking lot as only patients were allowed in the building.
I could maybe even have gone for a swim or a yoga class when family or friends offered to come over so I could have a short break. I could have shared a coffee with a caring friend while David slept upstairs. In short, I would have had some important points of human contact that I needed.
Almost nothing has been written about how the pandemic has left family caregivers stranded. We shoulder an enormous burden that is largely unseen in normal times. Curtailed resources, though understandable, impact us greatly. Telemedicine has not even begun to address the enormous role the family caregiver plays in ongoing care. And the informal network of family and friends that every caregiver depends on which paper over the yawning gap in social services has been dismantled by the merciless nature of this virus and its demands to social distance.
So self-care for the caregiver definitely goes to the end of the line. But having lived through several weeks of intensive caregiving, I know that is a mistake. A big one. Though it is entirely understandable. In those weeks I felt entirely alone and stressed.
But I also wanted to really help restore my husband’s health which I knew meant maintaining my own. I just had to figure out how in these globally strange times when we were truly home alone.
Weirdly, it all began with YouTube. TBC.
What has helped you, as a caregiver, take care of yourself in these stressful, isolated, truly strange times?
Heal From Inside Out
The Vagus Nerve
Life reflects our body’s state; many feel threatened, stuck, and unsatisfied with their health and well-being. Any threat, real or perceived, can elevate inflammation in the body, which is mediated through the vagus nerve.
The vagus nerve is one of the longest nerves in the body, communicating bidirectional information to the gut, liver, heart, and lungs back to the brain. The vagus nerve is the main nerve of the parasympathetic nervous system responsible for helping our body to return to a state of balance or homeostasis.
Our modern-day lifestyle has evolved to become very demanding, and many work under intense stress. It’s not always easy to overcome stress and the emotional baggage that comes with the demands of life. We may be aware of the many stress points that can contribute to burnout and mental exhaustion, but we don’t stop to think about what might reverse it.
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Our body is very resilient, we underestimate its healing power.
If you live with an overwhelmed nervous system, then most probably your vagus nerve is weak. This is the main reason that, if the vagus nerve is weak, it is harder for people to regulate their own emotions.
On the other hand, a higher vagal tone is associated with emotional stability and resilience. Everyone has the power to thrive and survive in living a happy and healthy life. We all have the power to rewire our brains by learning strategies on how to tone the vagus nerve and to reduce inflammation. Each one of us has the power to heal and rejuvenate at the cellular level.
Instead of surviving and hoping to thrive someday, it is necessary to enjoy life at this very moment. There is no perfect time to thrive. Thriving is a learned skill similar to learning a new language.
What can you do?
Tone the vagus nerve by practicing meditation, pranayama (breath work), exercise, eat more plant-based meals, build relations, connect with nature, exercise, sleep 7-8 hours/night, and forgive, let go of old wounds. These are simple yet power tools you can incorporate into your daily routine to build resilience, reduce inflammation, and be healthy and happy.
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Patient advocates can incorporate simple strategies for wellness to improve health and happiness.
The above strategies have shown promising results. The Holistic Virtual Healing Journey developed by Healthy You Lifestyle Center for patients with chronic conditions has shown strong improvement in clinical outcomes.
Often, overwhelmed people require care coordination and coaching to improve their health and well-being. However, physicians often lack the time, tools, and training required to effectively coach patients. Patients have barriers with transportation, time, and they lack trust and relationship with their physicians. The lack of trust is due to the reality that physicians have limited amount of time; these limited time frames prevent them from spending the time they need to build therapeutic relationships. Building relationships with patients is the key for patients to successfully open and communicating their needs.
Planning for Alternative Living Arrangements
As we age, at some point in our lives, we may experience a downward progression; it could be physical, cognitive, or some combination. And while each individual’s experience will vary, there are some consistent patterns.
For some of us, the change in type and degree of care required will also require a transition to an alternative living environment(s). There are multiple options, each with its own cost. In most cases, these costs come as a surprise.
As to whether long-term-care insurance makes sense, I refer my clients to their financial advisor. A decision to embark on such insurance products needs to be made in the context of a greater financial plan.
Insurance aside, here are some important things to understand about possible living environments…
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CINTAA Elder care shares useful information regarding healthcare on weekly basis. The post is only for information purpose only. Please check with your health care professional before using this information. To keep yourself updated with many other health tips, stay with us. We provide certified caregivers for seniors at home. If you need any help regarding eldercare, please feel free to call us today at 561-963-1915.