I still remember the date (December 12, 2003) that I drove Tom home from his 4-1/2 months’ hospitalization – first in St. Clare’s Hospital in New York and then UCLA. He got Bacterial Meningitis on a business trip to NY, was in a coma and on life support for 7 weeks and amazingly beat all the odds and survived. Learning that he would come home again was the very best news I ever received. After almost 4 months in bed, he was very fortunate to be accepted into the excellent UCLA Rehab Unit where he learned to eat independently, stand and walk with a walker or use a wheelchair for longer trips.
So I should have been the happiest person alive the morning we left UCLA for home. I had used all my family leave by mid-November and was back at work as a department head in a large corporation. It seemed that my life was simply returning to normal.
UCLA therapists had taught me how to transfer Tom from the car into the wheelchair but the first time I did it when we arrived home seemed much more difficult than at UCLA. My second and most terrifying activity was getting all of Tom’s many prescriptions filled and somehow organizing them into a manageable routine. Thankfully my wonderful daughter came up and bought our first pill organizer. I was 60 and Tom was 65 and neither of us had been taking any medications so this was all new.
We had nurses and physical therapists coming in for a couple of weeks. They tried to teach me wound care, the best way to help with showering and how to prepare his diet and encourage him to eat it. Fortunately we had taken out a long term care insurance policy several months before and hired a caregiver from 7:00am to 6:00pm when I was at work.
I totally recognize that I had much more help and guidance than many families do when transitioning a person from the hospital. And I was actually terrified that I would do something wrong or not do something right and my husband would suffer because of it. Learning to be a caregiver for my husband and caring for him was by far the most difficult thing I ever had to do.
In 2012 AARP and United Hospital Fund put together a report “Home Alone: Family Caregivers Providing Complex Medical Care.” At that time there were many rehospitalizations because family caregivers were totally ill prepared to care for their loved ones when they returned home from a hospital stay. This report shed light on the need family caregivers have for support for the medical/nursing tasks they need to do when transitioning a family member home from the hospital or rehab facility. Elaine Ryan, AARP Vice President, said they had heard stories about medication mismanagement, which is one of the main reasons for rehospitalizations and can be fatal.
Their report also led to the creation and rapid adoption of The Caregiver Advise, Record, Enable (CARE) Act to make it easier to bring a loved one home. Three important provisions Ryan and her tram wanted to include are the following:
- Require the hospital to identify the family caregiver when a patient who is likely to need follow up care is admitted.
- Make sure people receive instruction on the medical tasks they will need to perform.
- Allow anyone chosen by the patient to be the designated caregiver, regardless of whether they are related.
AARP carried on a 7-year campaign to get their draft legislation for CARE passed by state legislatures around the country. They were very successful and now 40 states have adopted a form of the CARE Act. This benefits hospitals as well as their patients by lessening the number of readmissions, which can present insurance problems for the hospitals and real trauma for the patients and their caregivers. AARP is continuing to work expand the number of states and the scope of the CARE Act.
AARP bulletins and website provide up-dated information on the CARE Act and a map showing the 40 states where this Act is now in effect. Every bit of information and assistance a caregiver gets can lessen the stress and fear that frequently come with the most challenging job most of us will ever have. If you find yourself in this situation, please take advantage of any information and services available to you.
Months after Tom was home from the hospital, I confessed to him that I had been terrified the day I brought him home. He then confessed to me that he had been even more terrified about my caregiving skills after almost 5 months of medical care by the wonderful doctors, nurses, physical therapists, occupational therapists and speech therapists who had saved his life and allowed him to return home and his life again. We would both have benefited from a little more knowledge.