This month hundreds of thousands of American families will face the decision about where mom (or dad) should live. The time will have come that mom or dad cannot live alone safely. And woe is the family member who has to deliver that message.
In the best case scenario, the decision can be a mutual one, or at least planned for. In worst case scenarios, the decision has to be made while mom is in the hospital and the family feels rushed to wade through all the options and financial implications of moving a parent to another place.
This week yet another of my friends had to face this decision with her mom, and it reminded me how much we don't know until we actually have to do it. So this blog is meant to share some facts and resources, and I invite all commenters to do the same.
1. Financial issues -- if your parents have been living in their own homes, there will be a tough decision about if and when to sell the house. In this market, selling is not easy. The choice might be to get outside help into the house until the market gets better, but outside assistance is not paid for by most insurance companies and certainly not by Medicare, especially if it is simply help bathing, dressing, taking medications, etc. All those "activities of daily living" were considered "social" not "medical" when Medicare was passed in the 1960s, and not much has changed since then. So your choice will be whether or not you can afford to keep your parent at home with some help or need to find another place for them to live and be cared for.
2. Facility choices -- there are a bewildering amount of choices and names for places. You can usually get some help by contacting your local Area Agency on Aging or asking the hospital's social worker for help or checking out "A Place for Mom.". , a free elder care referral service. Almost all non-hospital settings have limited Medicare coverage, something that comes as a shock to most people. Medicare will cover about 30 days of rehabilitation care after an acute episode, like a stroke, but after that, the coverage pretty much runs dry.
Independent living means an apartment with meals served in a common dining room. Laundry, room cleaning, activities, etc. are part of the price, and the occasional delivery of meals to the room if the resident is ill. But independent living requires that the person be able to manage their daily life pretty much on their own.
Assisted living includes the room and meals plus -- help bathing, getting dressed, taking medications, etc. AL facilities often allow residents to buy more services from a menu, with each things costing a separate amount. Pushing a wheelchair to the dining room costs $5, etc. You should be able to google AL facilities in your state, but here is a great site for California.
The cost of assisted living varies tremendously from state to state. If you live in California, it ranges from $3000 to $5000 a month for a one bedroom apartment with 2 or 3 meals a day and the opportunity to "buy up" some additional help. The more assistance that is required, the more expensive it can be. Other states can be much cheaper, but if the older person is mainly living on social security, it can be a tight squeeze.
Residential care is sometimes a separate license in some states and offers a little more help than Assisted Living but not as much as a nursing home.
Dementia care is a separate category of its own. Often AL facilities will have a wing for dementia/alzheimers residents. It is the most expensive and the decision that the parent is ready for that is one of the most difficult for a family to make.
Nursing home care (skilled nursing) means just that -- that the person requires some type of medical or nursing assistance for intravenous feeding, oxygen, daily injections, etc. It is as or more expensive than dementia care and again, as in all of these options, it is not covered by insurance unless it's for rehab for 30 days or you have a long term care insurance policy for the person.
3. Care in the home -- After checking out a lot of these places, you may decide to try to keep mom or dad at home. If you put "home care" into google you get this bewildering array of choices. At this point, it is best to ask friends and neighbors for recommendations or the hospital social worker. Allowing people into the home requires that they be checked thoroughly and trained. You don't want to trust just anyone to come in and care for your parent. There are some pretty awful stories about bad choices in this regard. Nevertheless, if you can afford to do it (salaries for trained home care workers range from $15 to 20 an hour -- do the math), it may be the best choice for your parent.
4. End of life care -- too bad it's become a dirty word. Hospice does an amazing job working with people who are either very close to dying or in some cases not that close but have requested "palliative" care -- care that will make them comfortable as they decline but not be invasive. My own mother is on hospice and we could not be happier with the treatment and care she is receiving. Most places do not have an inpatient hospice, so the hospice staff come to the facility or the home, usually 2 or 3 times a week. Hospice is not a substitute for full time care, but it does allow the person to make their own decisions about what kind of treatment they want and need, and as a person ages, the ability to make this type of decisions becomes even more important. So much control is take away from elders. Giving them back as much as possible is critical to their mental health.
If you are facing or have faced these decisions with your parents, please share your experiences and what you have learned. As we all age, the decisions will become ours as well. Best to be prepared.