In the mid-1800s in England, William Rathbone, a wealthy businessman, with the help of Florence Nightingale, a nurse, established a school to train women to become “visiting nurses.” Their job was to administer care to the poor and sick in their homes. This was the beginning of caregiving at home.
Caregivers, who now are most often family members, are a very important part of the healthcare continuum. Without the assistance of in-home caregiving, hospitals, nursing homes, and rehab centers would be overwhelmed and costs would rise higher than insurance would be willing to cover. The average age of a caregiver is 49, however, there are a large number of elderly folks (approx. 10%) who have been thrust into the role. One of the biggest obstacles is getting help for the caregivers themselves. 48 million Americans are caregivers for someone 18yrs of age or older. The majority of people in this role have had no formal training in nursing or nursing care.
The average cost of an in-home caregiver is $27 per hour and most cannot administer medications. In the case of our elderly, Medicare does not cover the cost of a caregiver for a beneficiary for non-medical situations - bathing, meal prep, and housekeeping. Medicare will cover, only for a short term, a medical person to come to do evaluations, reconcile medications and train loved ones on how to perform certain tasks. It must be deemed “medically necessary” for coverage to occur and it is for a very limited number of visits.
Most patients who need care like this are also on state-funded insurance, aka Medicaid. In the case of Medicaid, to qualify, you will need to fill out all of the paperwork to see if the client can receive benefits, this is daunting and lengthy. Remember, Medicaid is only for patients who have low income or who do not have a lot of assets. The state looks back 5 years at all of the financials of the client. If the client is deemed “over-income”, they will need to perform a “spend-down” which entails using up the money you are over on items that are necessary for the patient’s care.
For example, my husband needed care and he was 67 yrs. old. He retired and collected social security and had a pension from his job. Unfortunately, he was over income by $1000/month per the state. To receive outside help, I needed to submit to the state how I spent the extra $1000/month to justify his care being covered by Medicaid. The only items that count toward that spend down are things that serve only him in his condition.
Needless to say, I was not able to justify the use of $1000 a month and had to pay out-of-pocket for any outside care. The quagmire that is insurance coverage prohibits a lot of families from getting outside help. Not many realize that you cannot get paid to care for your spouse either. Anyone else can care for your spouse and get paid to do so, except you. It is a given that the spouse is responsible for giving care but not eligible for compensation. Caregiving now falls on the family members or friends. It’s overwhelming for most families. In my opinion, it is a travesty of the healthcare system that the spouse cannot be paid to care for their loved one when it is touted that in-home care facility is the best care for your spouse.
So, with all that said, why do most people try to do caregiving at home? There are a lot of moving parts to this. I can speak about this from my own experience. First and foremost, it’s someone you love and it is very, very difficult to decide that it’s time for nursing home care. I felt and still feel that I was the best caregiver for him. I knew everything about him, his likes and dislikes and his habits. I wanted to keep him in his own home for as long as I could.
There is a lot of guilt that runs alongside responsibility. I took a vow 32 years before to care for him “in sickness and in health.” If the tables were turned, I would have wanted him to care for me if he was able. I felt placing him in a nursing facility was akin to abandonment and admitting defeat. There were also our finances to be concerned about. I knew that once he was placed in a facility, I would have to relinquish his income...both his social security and his pension to the nursing home, file for full Medicaid benefits by making sure he didn’t have any more than $1200 in assets or be responsible to pay $12,000/month out of pocket for nursing home care. The state does a forensic accounting of your situation, especially to see if you are hiding any assets. Remember, they want to only provide coverage if necessary. This is the main reason long-term caregiving is on the rise.
My husband developed “early-onset dementia.” I left my job in the last year of his life to perform full-time caregiving at home for him. In the beginning, it was not too bad. I was already used to cooking, doing his laundry, etc. But it quickly became very difficult. He no longer wanted to shower or change his clothes, he started to become incontinent. He tried to escape the house and physically fought me when I tried to keep him from being harmed. I could not go back to work, I couldn’t shop alone, I had no social life and my health was suffering.
Caregiving is NOT for the faint of heart. It is a 24/7 job. You do not get a break, and if you do, it’s short-lived. It is NOT like caring for a baby or child where as time goes on, things get easier...on the contrary, it grows worse as time goes on. Caregivers suffer from physical, mental, and spiritual issues. Most suffer from anxiety and develop stress-related problems, such as depression and Post Traumatic Stress Disorder. Some will go on to develop heart issues and high blood pressure or other serious health problems and some will pass away before the loved one that they were caring for passes away. It is encouraged that a caregiver seeks mental health care during this time.
Hospice care is a newer concept. It began in England in the 1950s when a doctor named Dame Cicely Saunders used the idea for end-of-life patients. She developed the first hospice in 1967. Its purpose is to provide specialized care for dying patients and their caregivers. It links pain control with compassionate care. Hospice care can be performed at a facility or in the home. It is covered by Medicare as long as the patient qualifies for hospice. To qualify, the client needs to be at the end of life (with no more than 6 months to live) and with a qualifying diagnosis. This would need to be documented by the physician caring for the patient. Hospice nurses provide medication - pain meds, opiates, etc. to ease physical symptoms as well as anxiety.
They also provide counseling and care for the family. Hospice provided in a long-term facility is normally an outside service. The company providing services will send its own nurses to the facility to start the program and administer pain medications and do evaluations. They will normally support the family with counseling for the following year after the death of the client. Hospice’s main goal is to let a patient die with dignity and with the least amount of suffering.
After a year of in-home caregiving, I could no longer take care of my husband. He needed better and more sophisticated care. I had to finally admit that I could not provide the best care for him any longer. I could not do 24 hours shifts. I don’t know how I thought I could. My husband was finally placed in a locked dementia unit. When he was dying, my family and I were called in to sit with him as hospice administered morphine to ease his pain and help him to cross over. Although it was a horrible experience to have your spouse die when you’re not ready, hospice made the transition easier.
They called me quite frequently to “check up” on me. They sent multiple brochures to me to encourage me to call them or visit them for support and my children were invited to do the same. I did try to stop being stoic and take them up on their offers and it was just what I needed at the time!
Caregivers are responsible for a loved one who is sick or dying, starting from meal prep, medication administration, physician visits, to offering assistance in dressing, wound care, laundry, toileting, etc. Depending on the financial situation of the patient, there may be additional assistance for the family in the form of a “personal care assistant” or someone to simply watch the patient while the family member shops or goes to work. The client can always pay out-of-pocket for care, but if insurance is needed to cover the cost, there are strict criteria that the patient needs to meet.
Falls are a major risk to the health of older adults. Seniors may have difficulty moving or being transferred from their bed in the morning to a chair in the afternoon. Caregivers need to ensure the prevention of falls and help the person stay comfortable.
Public transportation or driving becomes impossible for people with certain medical conditions. Old age only fuels misery, and traveling alone becomes troublesome. A caregiver may have to look for senior transportation alternatives for their doctor’s appointments and other activities.
With critical health concerns and old age maintaining a home becomes increasingly difficult. Older adults may require assistance in the kitchen with dishes, garbage, or vacuuming. If they live in a separate house, yard cleaning and shoveling may also be difficult tasks to do alone. Caregivers are considered responsible for keeping with the maintenance of their client's house.
One of the most basic but essential responsibilities of caregiving persons is to offer kindness, empathy, and companionship to the patient. Caring for an aging patient allows the caregiver to strengthen their bond and connection and keep them happy. Feelings of loneliness in older adults can lead to serious health consequences, including depression. Therefore, a senior caregiver must be empathic toward their client.
Caregiving and hospice care are services that can be provided to a client depending on where they are in their disease process. Below is a list of resources for caregivers and hospice care.
Remember - ask for help! No one can do it alone!
Peace to all on this journey.
Author Profile: Laura Castricone, Respiratory Therapist
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