A few years ago I received a phone call at the office from a man with an unusual suggestion. He noted he was a stroke victim and confined to bed after hospitalization. He called me because he knew I am an elder law attorney. He stated he wanted to stay at home and suggested he thought he could do it with an aide coming in a few days a week for a few hours a day. He lived alone.
The thought was so out of bounds for me I hesitated to answer. I asked “how will you eat?” “How will you get out of bed to handle natural bodily functions?” A series of thoughts came to me. It was difficult to believe he was serious or that any plan of care had been developed for him. I made it clear I thought his idea under the circumstances he described was unrealistic.
Still, when asking healthy adults whether they would rather stay at home or move to a nursing home if they become seriously ill or frail or demented, the answer is obvious. The surveys generally say they would like to stay at home. Under circumstances today where because of a pandemic, the risk of further illness is potentially greater, and the risk of isolation is serious there are likely even more people who would rather stay home. There are alternatives, such as nonmedical care in the home and also hospice. This assumes a realistic assessment and a plan.
What studies of preferences do not ask is “at what cost” in time, money, safety and emotional stress should I stay home? I think most people are thinking they will need a few hours a day of care a few days a week. They figure family can help and often they do. Sometimes, though, the help that is needed exceeds what can realistically be accommodated. For outside caregivers 24/7 care can be very expensive. For family it can lead to disability for the caregiver. One in three caregivers dies before the person he or she is caring for. Every case needs an individualized realistic plan.
If you are a family caregiver or are putting together a plan, here are some considerations:
1. If a family member is expected to handle this, is it realistic to expect help of this kind for the person charged with that help? Is that person physically and emotionally able to provide assistance or can that person, with readily available outside help, (including yours) manage? Is there a written family agreement?
2. Consider the kind of help that would be needed. When one person cannot be lifted except by two strong people, it can be difficult and potentially dangerous for both to care for the person at home. If because of dementia a family member leaves pots on the stove burning, wanders from the house, will not turn on the heat in extreme winter conditions or the air-conditioning in extreme heat, it can be unsafe to stay at home.
3. Consider how long the care will be needed. If a person is terminally ill and expected to live for a relatively short time the plan would be radically different from a situation such as with dementia where care would possibly be needed for many years.
Finally, the person who tries against all odds to keep a parent or spouse at home and is unable to continue should recognize he or she has done what can be done. The best that reasonably can be done is all that should be expected.
One book, “Should Mom Be Left Alone? Should Dad Be Driving” by Dr. Linda Rhodes, contains an entire section on “Living with Chronic Illness” including sections on dealing with depression, what is a ministroke, what are the signs of dementia or Alzheimers, how to cope with wandering, how a parent can come home and cope with recuperation from a hip fracture, what eye diseases should older adults be concerned about, and what do we need to know about pain management.
Many caregivers deal heroically with the strain of caring for a family member at home. Elder law attorneys can help. Caregivers need to know they are not alone.
Esquire, Colliton Law Associates, P.C. Janet Colliton has practiced law for over 38 years, 37 of them in Chester County, Pennsylvania, a suburb of Philadelphia. Her practice, Colliton Law Associates, PC, is limited to elder law, Medicaid, including advice, applications and appeals, and other benefits planning including Veterans benefits, life care and special needs planning, guardianships, retirement, and estate planning and administration.