When asking healthy adults whether they would rather stay at home or move to a nursing home, the answer is obvious. When residents of facilities are asked if they would like to come home, the answer is often the same. Studies demonstrate that most people would rather stay home and “age in place.” The exceptions I have heard, all from women, have been that they do not want to remain at home if their family has to take extreme measures to care for them. A common expression is “I do not want my daughter to have to go through what I did (in caring for a very frail parent or one with dementia).”
What studies 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. Certainly their family should be able to care for them or they could bring someone in for those few hours to help. Sometimes, though, the help that is needed is 24/7 and involves patrolling hallways to make sure parents do not fall or following spouses everywhere concerned that they may wander. Another question would be what sacrifices would you expect from your family to keep you at home in extreme conditions.
What is tragic is the guilt that some family members feel when their parent or loved one eventually needs care outside the home even after they have successfully managed to keep their spouse or parent home for many years.
Here are some questions to ask:
1. Does your family member live alone or could someone, usually a family member, move in to help or could you parent move in with someone? If so, this shared living arrangement should be done with a family agreement, preferably drafted by an attorney used to dealing with long term care and financial issues. There needs to be a backup plan also if this does not work.
2. Is it realistic to expect help of the kind needed from that other special person? In other words is that person physically and emotionally able to provide assistance or can that person, with readily available outside help, manage? Often caregiving falls to one’s spouse. I have seen spouses care for their frail or ill husband or wife with remarkable strength and courage. However, when one person has a disabling stroke and the other has severe dementia, there are really two people to care for, not just one. You need to set in place a backup plan. As one older man said to me “Too many old people taking care of old people.” What he meant was older and frail or disabled.
3. When one person cannot be lifted except by two strong people, it can be difficult if not impossible to care for the person at home. It can be dangerous also for the caregiver.
4. Extreme dementia can make it unsafe to stay at home. If a parent leaves pots on the stove burning, wanders from the house and does not return, 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.
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 interesting book to answer some of these questions is “Should Mom Be Left Alone? Should Dad Be Driving?” by Dr. Linda Rhodes. The book 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. They 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.