My Family Says I Have to Stay

June 26, 2020

Well, here we are officially in summer, still in a pandemic with numbers rising instead of falling while too many older adults are still trying to understand why they’re still confined within nursing homes and assisted living facilities.  The rules vary from location to location, state to state and are stated as “recommendations” or in stronger terms of “have to” but in reality the restrictive confinements are still in place.  Residents wanting to get outside or even leave for a day risk the real possibility of not being let back in.

I talked about whether to go into a nursing home or assisted living placement in the last blog in May.  It now has been almost 4 months that some older adults were literally sent to their rooms and told to stay there.  I can’t even imagine how that must feel.  How much television can you watch?  If the window in your room doesn’t open, how is to not be able to hear the birds, breathe fresh air, feel the sunshine?

A random call last week came in from a woman who said she was in a nursing home and wanted to go home.  She had gone in for rehabilitation after a hip replacement.  COVID-19 hit, shelter in place orders were instituted and now all this time later, she’s ready to go home.  Her adult children have Power of Attorney and the nursing home won’t even talk to her about the situation.  She has a home to go to and feels ready to leave.  Now, the caller was not known to me but after a lengthy conversation, I referred her to the LTC Ombudsman to help sort it out.  Why?

Depending on how the Power of Attorney is written and in what state, if a person is competent to make their own decisions, it overrides the kids wanting Mom to stay in the nursing home.  The caller told me the kids (that she can talk to but can’t see due to nursing home rules) told her she was staying here permanently.  At least that was her interpretation.  I told her to talk with the LTC Ombudsman, a state-mandated trained volunteer advocate who can work with the client, her family, and the facility to sort it all out.  Sometimes it just takes sitting down with all the concerned parties to understand the worries and find a workable solution for everyone.  I’m hopeful that will be the case for her.

With 40-60% of all deaths nationwide occurring in skilled nursing homes,  it is understandable that a resident would be scared of catching the Coronavirus, having to remain in a facility where there are cases, not getting good information from the facility about the risks, and of course, dying in there.

With all the bad press, it is interesting to see more assisted living facilities with cushy names like “Bountiful Gardens”, “Serenity Flowers” and others springing up advertising their grand opening with full-page print ads and pricey commercials on television.  Built for-profit and owned by large corporate interests, assisted living facilities continue to require what residents call “lockdown”.  Some residents who sold their home to move in are sorry for their decision and would give anything to move back into the home they left to be once again in charge of their lives.

I’m sure that the protests around the country – nonviolent and others where violent protests led to injuries and property damage didn’t escape your attention.  I don’t condone violence of any kind but as a product of the 1960s, I believe a peaceful protest can be an effective tool.  If you are reading this and reside in such a setting and are tired of being confined to your room for weeks or you’re a family member who is tired, disgusted, and worried about your loved one I would strongly suggest you speak out to anyone and everyone who will listen.  I’m not for inciting a riot but non-action after all this time is not acceptable.

As a resident of a skilled nursing facility or an assisted living facility where the administration is setting the rules, know that the resident/patient has rights.  Some ways to protest this behavior are to:

  1. Ask for a written copy of the current procedures in place for the facility to be emailed or mailed to you, the resident, or the Power of Attorney. It may be called the Resident/Patient Bill of Rights.
  2. If there are restrictions in place, ask for a timeline when to expect the restrictions will be lifted.
  3. Request in writing how the administration/staff are personally caring for the resident i.e., Are hands-on showers happening? How often? Or…Is the resident being fed (if needed) – how many meals/day?
  4. Are residents/clients being weighed to assess weight gain/loss?
  5. If detained in their room, why type of activities is offered/given to each resident? How often?
  6. What kind of interaction is available to the resident/patient? By whom?  How often?
  7. What is the protocol when a family member/close friend comes to visit? See the person? Talk over the phone?  At the window?
  8. What health protocols are in place to test staff coming into to care for residents? Are residents tested?  If testing positive, what is the protocol to protect other residents and staff?

I would ask questions in writing and a response within the week.   Depending on the answers and the critical nature of the situation, remember someone is paying the bill for the person in the facility.  If you are the one responsible for paying the bill, take your time in paying it.  You are beginning to protest.

Whenever possible, visit in person.  Call the facility and make an appointment if you have to and tell them your intent is to see the resident/patient.  They can bring the person to a window or a doorway so you can see the person and have a conversation.  Set up a schedule in your mind i.e., once a week and tell the facility “I’ll be back next Wednesday at 10 a.m.”  Send them a reminder on Tuesday. Your firm, gentle push is a way to protest the treatment of your loved one and require change.

Take something to give to the person.  A bouquet of flowers, several pieces of fresh fruit that can be washed, a recent photo, or a new magazine.  Put their name on whatever you bring.  Get other members of the family involved so you’re a consistent presence.

What do you do if the facility is not responsive?   Give them time to respond. Perhaps remind them a second time of your questions.  If they still do not respond, call and leave a message for the facility administrator or Director of Nurses.  Now you’ve written, called several times but nothing.  It’s time to contact the Long-Term Care Ombudsman for the county.  These trained volunteers are not being allowed in facilities now either but can help you get some action from the administration.  Tell the Ombudsman the name of the facility, the resident’s name, your relationship,   your concerns and what you’d like to see happen.  Ask when you’ll hear back from them and wait and see what they can do.

If you continue to have problems or a non-response, a  call to the county’s Adult Protective Services (APS) could help.  Do not pay the bill but send a letter to the bookkeeper of the facility stating your case and including your questions.  You’ve written asking questions about the resident and the facility.  You’ve not gotten any response.  How do you know the person hasn’t died and the facility is continuing to bill for a dead person? Tell them once you receive a response, you’ll continue paying the bill.

If the person is on Medi-Cal, your options are a bit more limited.  However, you can write the Medi-Cal unit of DHCS, Sacramento, and the state LTC Ombudsman detailing the situation.  I would also copy your legislator and the Board of Supervisors for the county of residence.

This is a different type of protest.  You could make a sign and stand outside of the facility with it saying in large letters, “I WANT TO SEE MY MOM!”  That is absolutely a protest and would probably garner you some media attention.  If you are “inside”, remember it is not a prison.  Even prisoners are allowed time in the yard each day.  You can write up a statement, give to the administrator, and notify the media via mail or email to register your protest. Someone said, “Stand Up and Be Heard!”  It’s time, don’t you think?

HAVE QUESTIONS:   Is moving into an Assistant Living Facility or Nursing Home in future?  How can you work around that decision and remain independent?  Send questions to:

Carol S. Heape, MSW, CMC is an elder herself and continues to search for answers on how to grow older.

Categories: Care Management