President's Message: Lessons in caring for elderly family members

by Jill Paperno

This will probably be my last column on the topic of caring for elderly family members. Since these columns have been published I have been approached by many people in our legal community who are dealing with these issues – it is so remarkably common. And many of us who are dealing with this are handling our day-to-day lives, while facing frustrating and often nearly impossible challenges. While the systems that handle the care of the elderly need to change, that won’t happen overnight. But perhaps we can begin to acknowledge the toll these challenges take on us, and create some support for those dealing with them.

On that note, the GRAWA Women’s Health Committee has developed an event relating to caretaking. So I am pleased to announce a (limited seating) event – “Caretaking and Taking Care,” on March 3. Contact info@grawa.org if you are interested. Going forward, perhaps each bar association can develop (perhaps together) ongoing opportunities for our legal community to give and receive support.

Moving to a residential care facility

When someone can no longer remain at home there are many issues to deal with – how to move a person and his or her belongings from their current home, what level of care is necessary and how to get the loved one into a new place. This is the point where you want to try to plan and consider options.

There are many long-term care residences in the Monroe County area. Some are for-profit organizations, and some are not. There is a range of care available in long-term care facilities, including senior living and other types of residences. The two main types of long-term residential care are assisted living and nursing homes. (Assisted living homes are divided into other categories – programs and residences — and the nature of the category determines whether Medicaid may cover the costs.) New York State offers a publication about assisted living residences on its Department of Health Website. In order to be accepted to any of these, an application must be filled out. But shortages of beds in some locations and reluctance to accept some patients may lead you to have to consider alternatives. Be aware, Medicaid will cover chronic care in a nursing home, but not all assisted living facilities. See http://wnylc.com/health/entry/150.

The search

As you begin your search I would urge you not to make some of the mistakes my family made. Do not plan for the care your family member will need based on his or her current status – talk to your family member’s doctor and find out how his or her condition is likely to progress, and what needs s/he will have then. When a family member moved into a local assisted-living facility dementia unit, we assumed she could remain there as her illness progressed. But we quickly learned that once she declined in certain ways – for example loss of mobility, incontinence and inability to transfer from bed to wheelchair and back – she was no longer suitable for that facility (which had taken a hefty deposit). Because dementia may cause unpredictable and swift decline, particularly with someone who is moved from one residence to another, the decline that was predictable contributed to her need to move six weeks later and a loss of the deposit. Learn from our mistakes. As you look at nursing homes or assisted-living facilities, consider doing the following:

  1. The “sniff” test – My cousin suggested this years ago when my father had to go for a short stay to a rehabilitation facility.  Res ipsa loquitur.
  2. Walk around.  Are people clean? Are they out in living areas or in their rooms. Spend some time.  Are the nurses and aides attentive or are the residents trying to get their attention? Watch the interaction – in my mother’s current location, the nurses and aides, unaware you are in hearing range, will tell patients they love them and will hug them. They call them by name or terms of endearment. This was not the case when she resided at another location in the same nursing home.
  3. Ask lots of questions including the following:
    1. Are there physical conditions that will require that my family member be moved to another facility?  If so, what are they? Do they include incontinence, loss of mobility, and inability to transfer?
    2. What happens when my relative runs out of money – can they stay here or do theyhave to move to another facility? Who coordinates the move?
    3. What is the staff-to-patient ratio? How do you meet that ratio, especially on weekends? (In other words, is there a nurse in another building who counts toward the ratio?) What happens when two people need care and there are only three staff on duty in a location?
    4. What extras will we have to pay for? (Do you cover the cost of Depends and other items? We were charged for Depends at the private facility.)
    5. What medical charges will we have to cover? (We were charged for medications at the private facility.)
    6. What will you do to manage my relative’s emotional and mental well-being? (Often people with dementia, Lewes Body and other disorders may suffer from delusions or psychiatric symptoms that require medications for anxiety, depression, delusions or other conditions. Some facilities have psychiatrists who specialize in psychiatric care for the elderly and are wonderful at tweaking medication until the patient is calm and content, but not comatose. Some are not.

Here is a checklist of sample questions.

Quick decisions

What happens when you have to make a quick decision? There are times a family member quickly declines, or cannot return to an assisted living residence following hospitalization. (And beware, sometimes less reputable facilities use hospitalization as a way of removing higher-needs patients when they are statutorily required to continue providing for them.) The hospital may tell you that you have to select a facility in 48 hours or less, and that if you do not, you will have to privately pay for the hospital care. This happened to us.  I was told to select 10 local facilities to apply to. I asked whether they all provided dementia care and was told they did not. So I refused to provide 10. I looked at four, and selected three. The social worker told me that was not enough. I told her to give it a try and we’d see what happened. The next day we had not heard back from any of them. I ran over to one of the nursing homes to find out why we hadn’t heard, and was told the application had not been submitted. (I still have questions about whether I was being steered to a less satisfactory facility based on reasons I can only speculate about.) I ran back to the hospital and told the social worker apparently she had not submitted the application. She did and my family member was accepted. Two lessons here – be the lawyer and advocate you are, and don’t accept unreasonable conditions.

Other help

And don’t forget, with issues relating to Medicaid or care provided to your loved one, our local LawNY office (Law New York) may be able to provide assistance. The LawNY Seniors Legal Services Project handles civil legal matters faced by individuals 60 years of age and older including power of attorney/ advanced care directives, health care issues (including Medicare and Medicaid), evictions, rights of nursing home and adult home residents, Social Security overpayments, public benefits, wills, deeds and debtor/creditor.

Jill Paperno is president of the Greater Rochester Association for Women Attorneys.