When Your Family Has Always Cared for Parents at Home

In many families, the expectation is that grown children care for parents at home until the end. Sometimes a parent said it out loud years ago. Sometimes nobody said it, because nobody had to. When care needs grow, that unspoken promise can make even talking about a move feel disloyal.

The guilt is real, and it is common. The National Institute on Aging says feelings about moving an older adult into a new place may range from loss and guilt to a sense of relief. The Alzheimer's Association, writing about caregivers of people living with dementia, lists thoughts like "I'm the only person who can take care of them properly" and "I must visit every day" as unrealistic expectations that feed guilt, along with feeling that you have failed if you cannot care for the person at home. Its advice is to accept feelings of guilt as normal.

It may help to ask what the promise was really for. Usually it was about keeping a parent safe, treated with dignity and surrounded by family. If home has started to put those at risk, a move may be a way of keeping the promise, not breaking it.

Every family draws this line differently, and these are patterns families describe, not a diagnosis. If any of them sound familiar, the first call is to your parent's doctor:

• One person is doing nearly all the care, and their health, job or marriage is suffering.
• Your parent needs someone nearby at night, and nobody can stay awake for it.
• There have been falls, missed medications, a stove left on, or wandering outside.
• Personal care such as bathing or toileting has become hard for your parent and the family to manage with dignity.
• Family members are arguing about care more than they are spending time with your parent.

Our guide to caregiver burnout and respite options covers short breaks, adult day programs and family caregiver resource centers, which some families try first.

Disagreement often follows distance. The sibling who lives closest sees the daily strain. A brother overseas, or an aunt who visits on holidays, sees a parent who seems fine for an afternoon. Some relatives may judge a move as abandonment.

The National Institute on Aging suggests starting with a meeting or call that includes the older person and everyone involved in their care, held when there is no emergency, and working as a team to identify what care is needed now and may be needed later. It also suggests naming a primary caregiver, dividing tasks by each person's strengths, and checking in regularly because the arrangement may need to change. These steps can help:

1. 1

   Start with facts, not blame

   Write down what a normal day and night look like now: the help needed, the hours, and who gives it.

2. 2

   Include your parent

   Ask what matters most to them: staying near family, their faith, their language, their food, privacy.

3. 3

   Ask the doctor for input

   A doctor's view of your parent's needs can settle arguments that family opinions cannot.

4. 4

   Compare real options

   More paid help at home, family taking shifts, a short respite stay, or a move. Look at each one honestly.

5. 5

   Agree on roles after any choice

   Who visits, who handles money and paperwork, who speaks with the doctor or the home.

If you are the one doing most of the care, it is fair to say so. NIA's advice to caregivers is that no one can be expected to do everything.

A move to an assisted living community or a board and care home, licensed in California as a residential care facility for the elderly (RCFE), changes what family does. It does not shut family out. California's Health and Safety Code gives residents the right to take part in planning their care and to involve people of their choice in that planning, and the right to have relatives and others they choose visit during reasonable hours, privately and without prior notice.

State rules also call for a care planning meeting before or within two weeks after admission, with the resident and their representative, and for each home's visiting policy to encourage regular family involvement. The National Institute on Aging encourages families to get to know staff, advocate for the person's needs and preferences, check in regularly, and build a relationship with staff as partners.

In practice, family members still bring favorite food, take a parent to worship or family events, sit in on care meetings, notice changes before anyone else, and translate a parent's habits for new staff. What changes is that you no longer have to bathe, lift and stay awake at night on top of everything else.

Raise it early and calmly, and more than once. Present it as a way to keep your parent safe and close to family, not as a decision already made. Our guide on talking to a parent about assisted living has more on how to start.

Your parent has the right to say no. If they refuse, and you are worried about their safety, read when a parent refuses assisted living for what families can and cannot do. With relatives, it can help to invite the most doubtful person on a tour. Seeing a home in person often answers fears that words do not.

Hamssa Benrekia helps families in the South Bay and Harbor area of Los Angeles County find licensed board and care homes and assisted living communities. She speaks English, Arabic and Spanish, and she can join family tours so relatives can ask their own questions. To talk it through, contact Hamssa. More topics are in the California Assisted Living Placement Guide.