New ideas needed for nursing and long-term care residents during the pandemic

This pandemic has been long and grueling for many. I fear we have forgotten our elderly population who are in nursing and long-term care homes. I know that the Mills administration has set strict guidelines for keeping these high-risk people safe and that was essential for the beginning of this virus. However, as we move ahead, I think new ideas need to be considered to protect the emotional well-being of many. My mother is one of the people who live in a long-term care home and her decline has been twofold since the pandemic began. I want to tell you a little about her and then offer suggestions for the near future.

My mother is 91. She was raised during the Great Depression and learned how to get by with little to nothing. Her mother died of pneumonia when she was 8 and her father raised her until he too passed when my mother was 18.  After saving and scraping, my mother and father bought a little county store in rural Maine. They did well and loved their work. My mother was sharp – she learned how to serve her community with necessary goods and earn a living at the same time. She also served in town government as a selectman, on the local hospital board and she served many offices in local clubs in our town. In addition, she was also the organist at our small, country church. My dad passed in 1991, and she took care of herself for 20 years, even plowing her own driveway which literally was a quarter mile long up a hill. To say that she was amazing would be an understatement.

Ten years ago, she was in a car accident and sadly, her health has been declining since. Two years ago, she had to go into a long-term care facility because her needs were overwhelming to our family. Today, she has dementia, congestive heart failure, hydrocephalus and is wheelchair bound. She can’t do much of anything for herself and is totally dependent on the staff at the care facility. There are times when she hallucinates and is afraid that she’s not safe. Some days she remembers how to pick up the phone and other days, she doesn’t. People do not put their loved ones in full-time care because they want to; they do it because they have to.

Since March, my mother has not had a hug from a family member. I used to visit her every day, sometimes more than once a day, and had the opportunity during these visits to make sure that her caregivers were paying attention to her needs. There were times when they forgot to elevate her legs and they would swell. There were times when they forgot to put her compression socks on. There were times when she refused meals and they went on to serve the next person, only to find out from me that she didn’t think it was meal time and was really hungry. 

Since March, I have not been able to enter this facility to check on my mother. I have been able to visit her at the window if it is a convenient time for the facility to make this happen. They have times when they are short-staffed and can’t get her there. It’s also hard to meet with her if it is cold outside because she gets cold at the window. The facility decided a couple weeks ago that they would have to limit and possibly discontinue weekend visits because they just don’t have the staff to make these visits happen  (she has to be lifted into her wheelchair to be taken to the window and then taken back to her room).  The weekend is my most available time to visit. This has all been a challenge. 

My mother has a telephone in her room. The problem is that sometimes she can reach it, and sometimes she can’t. Sometimes she hears it ring but she can’t remember what to do to talk on it. Sometimes, she holds it so that if I call, it’s busy. My sister did set up an Amazon Echo Show in her room before the virus hit. We had to hook up internet for her because the facility’s internet didn’t work well. The device works some of the time but often, the staff turns it around or moves it so that we can’t see her. 

Often, it’s pointed in the wrong direction. I don’t believe they are doing this purposefully but they are uncomfortable knowing that we can observe her care. The device has a small screen so that if it’s not pointed right, she can’t see us and we can’t see her. It has been frustrating to say the least. 

Given that there is no end in sight to this pandemic, I would suggest that the state help families find a way to interact with their loved ones. I understand the safety precautions and do not want my mother to become ill. I also do not want her to spend a year or years without any family around to check on her and be with her to give comfort. If you have ever had a loved one in care, you know that the best care is given to those who have family involvement. I would hate to see the care facility become complacent in the situation of no family involved. In some ways it will be easier for them but the quality of care to the patient will decline. Family must be involved on a daily basis if they can. I believe her care facility is doing the best that they can, but they don’t know my mother like I do. They are not equipped to make sure her care comes with the love of a family member.

I think it’s time to exit panic pandemic mode and enter thoughtful planning mode for living with a pandemic. Staff members who work in these facilities leave work each day and go home. They undergo screening at work and wear proper PPE when they come back each day.  They shop in the same grocery stores that I do (and I wear a mask; some of them do not).  Why is it then, that each elderly person could not have one family member who is designated to visit, using the same screening protocol as the staff? Perhaps visits would take place in a designated area. I do not have a solution to this issue but know that it must be solved, for the safety of our elderly. It’s not fair to them to be quarantined for months and maybe years without their family.

If there is not an in-person solution, why can’t there be a technology solution? I see this as a two-pronged approach. My mother has an Amazon Echo Show. The biggest issue with this device is the staff in her facility. This piece of equipment is not the norm; it’s the exception. The staff is not used to it.  If technology were available to all of those in care homes, the staff would also need to be trained in how to use it. They also need training, because of the pandemic, in culturing family involvement, not inhibiting it. In this day and age, it seems that Maine can and should do better for their elderly. It is unconscionable to leave this population without the best care and some method of regular contact with their families in the final days of their lives.

I would suggest the following:

1.     Investigate some way for a family member to visit their loved ones. If that cannot be realized, then figure out reliable technology for all of those in long-term care homes.

2.       Make technology the norm, not the exception in care homes by providing funding to these facilities to hook up residents.

3.       Provide the staff adequate training in using technology and provide training regarding the benefits of it to the patient’s social and emotional health.

4.       Figure out the best technology to use in this effort. It has to be something the patient doesn’t have to “answer” yet the visitor will just pop up on the screen. Could something like this run via the television? Whatever the answer, family members should be able to call in, even if there are black out times when personal more confidential care is being given.

5.       Make sure families can see their loved ones on a daily basis. This is absolutely necessary to be sure proper care is being given. 

My mother hasn’t had her hair cut since March. No one is allowed in her facility except the workers.  How long will this continue? Her decline has been much more rapid since March. There are days when her dementia has worsened so much that it is scary. Sometimes she remembers the virus and other times she doesn’t. Before the virus, if my mother was having a bad time, her facility would call me and if I could, I would go sit with her. Now, I can’t do that and often, I can’t even call in to get her and talk her through these bad times. 

There must be a better way. I am sure many other families feel the same way. I think that Maine has a responsibility to do better. 

Wright is a resident of Sebec.