Is It Realistic to Stay At Home Indefinitely?
When healthy adults are asked would they rather stay 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 typically 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 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:
- Does your family member live alone or could someone, usually a family member, move in to help or could your 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 and this written agreement should include compensation for the caregiver as well as respite help from family if it becomes too much for the caregiver, and a backup plan. One in three caregivers dies before the person he or she is caring for. This is stressful work!
- 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. One older man said to me “Too many old people taking care of old people.”
- When one person cannot be lifted except by two strong people, it may be difficult, even dangerous to care for the person at home. Again, both the caregiver and the patient can be at risk.
- Extreme dementia can make it unsafe to stay at home. Where a parent leaves pots burning on the stove, wanders from the house and is lost, will not turn on the heat in winter or air-conditioning in summer, 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 eventually unable to continue should recognize he or she has done all that can be done and not feel guilty.
Dr. Linda Rhodes in her book, “Should Mom Be Left Alone? Should Dad Be Driving,” devotes an entire section to “Living with Chronic Illness” and others on dealing with depression, what is a mini-stroke, 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 and they also deserve and need breaks to keep them going.
About the Author Janet Colliton
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.