From the diary of a journalist | What it’s like having a loved one in a long term care facility and what you need to know

The total number of deaths among long-care residents has decreased by one since last week and even though that’s good news, it’s still a serious situation.

For some, the thought of having a loved one in a long term care facility alone and at risk saddens them because there is absolutely nothing they can do to help them – or even make their situation better.

The thought of moving a loved one home temporarily seems like a great option but rethinking and actually planning it, makes you stop and wonder, what happens if your loved one gets sick at home and sickens the rest of your household – and anyone else they may come in contact with? Then what? It’s a tough decision. I know. I have a loved one in a long term facility right here in Delaware.

My mother is at Manor Care North and she has mild dementia and there’s a good chance she has no clue what is happening in the world outside of her room, and that thought alone makes me sad.

The thought of her not being able to leave her room during the pandemic as if she was a prisoner of war weights heavy on me because she lived a similar life during World War II. Sometimes trapped in her home with her mother, they were always on the lookout and prepared for the unknown. The sounds of the civil defense sirens still haunt her today, and she has told me her stories – some hard to hear and some that will make you cry.

I Imagine the thought of staff putting up plastic to separate her from her other roommate to keep them both safe. I sometimes wonder, what is going though her mind – seeing them do that it must weigh heavy on her. I then begin to cry, knowing that there is nothing I can do to help her, and if I try to, she either gets sick, we both get sick, and everyone else we come in contact with gets sick too, and in that trail of sickness, some will die.

Unfortunately, she, like so many others in long term nursing facilities across Delaware, have tested positive but luck was on her side and she tested positive with no symptoms. This means she is an asymptomatic carrier. While that is a blessing for her, not everyone has been that lucky. Many others have suffered and a lot of people have died.

We began to bend the curve but then senior week activities happened and the number of daily positive cases began to rise once again. On Friday, Delaware Officials reported, that there has been a total of 1,155 positive COVID-19 cases cumulatively involving long-term care residents, and 333 residents of Delaware long-term care facilities have died from complications related to COVID-19.

U.S. Navy Cmdr. Youwei Lin, from Lexington, Mass. (left) and Lt. Cmdr. Trevares Baker, of Pensacola, Fla., monitor patient information during a surgery aboard the hospital ship USNS Mercy. Mercy deployed to support the nation’s COVID-19 response and is serving as a referral hospital for non-COVID-19 patients admitted to shore-based hospitals. This allows shore-based hospitals to focus their efforts exclusively on COVID-19 cases. The Department of Defense is supporting FEMA, as well as state, local and public health authorities in helping protect the health and safety of the American people.

Although the total number of deaths among long-care residents have decreased by one since last week,  one individual was excluded who was determined to be a resident of an independent-living facility, therefore, the individual would not be considered a long-term care resident., officials explained.

The locations and number of deaths involving residents of long-term care facilities are:

Delaware Long Term Facility COVID-19 Deaths

One thing for certain. The pandemic has definitely brought us a lot of worries, fear, and uncertainty and I sometimes wonder what goes though her mind when she sees staff come into her room dubbed in protective gear as if they are ready to perform surgery. I know I would probably panic but we on the outside have come to terms with it, and for most of us, we have. We eventually realize that it’s really about keeping those on the inside safe. At least that’s what we thought back in May when the curve really started going upwards at a steady rate.

I sometimes think about how horrible this must be for her even though she doesn’t really know what’s going on, and I’m sure the staff are not telling her everything because for so long they were keeping things quiet. Yes that means being dishonest and misleading with family members of residents about what was really happening inside those double glass doors. That was until the Department of Health got more involved on what was really happening. They kind of shined a light right on them. That’s when I started investigating more.

For so long I trusted the facility who was caring for my mother. I trusted they were being honest with me…about her care, about her condition, about the handling of this crisis, but that wasn’t the case.

I think state health officials and Delaware Governor John Carney began to realize, we have a situation in long term care facilities that is getting out of control, and on April 15, Governor Carney issued an 11th amendment to his State of Emergency requiring stricter guidelines to prevent COVID-19 infections in nursing facilities and other long-term care facilities. Visitations was already cut off as was access into the building. I began calling Manor Care North once a week about her condition, how she was doing, her mental health, and eventually I began asking her to be tested but they refused, and continued to tell me she was fine and had no symptoms so a test wasn’t needed.

I then began asking if anyone was exhibiting covid-19 symptoms. I was always told the same thing, that they had no cases, but I later found out that wasn’t true. I was told that they do not test the residents unless they exhibit the symptoms of covid-19. When I asked why, I was told it was an uncomfortable test and they didn’t want to put residents through the stress and discomfort. I get it, the compassion. I really do, but I would rather be tested and isolated if positive, even if I have to die alone, knowing that I have saved many others along the way, then not be tested, be a positive carrier, and sickened many others some of whom will die.

DATA FROM MY HEALTHY COMMUNITY DASHBOARD

When testing became more available, the Division of Health got more involved with Delaware’s long term care facilities. They began creating plans, and working more closely with them and on May 5, Governor Carney and the Delaware Division of Public Health (DPH) announced a plan to test all residents and staff of Delaware long-term care facilities for COVID-19.

Health officials provided facilities with tests, testing supplies, training, and support for the universal testing program to protect the most vulnerable Delawareans. Expanding COVID-19 testing capacity for vulnerable populations is a requirement of federal guidance for economic reopening.

Public health experts at the Division of Public Health (DPH) supported clinicians at long-term care facilities with the new testing program. Health officials also provided guidance on testing of symptomatic and asymptomatic persons and the interpretation of results. They provided recommendations to protect residents and staff based on results, including transmission-based precautions, isolation, and patient and staff management strategies.

I imagine they had hoped that the deaths would cease or at least slow down, but some facilities became objective, refusing to implement some of the recommendations they were suggesting. Health officials just want to save lives and bend the curve. The only way to do that is through testing and there are many testing events that’s been happening every week. Information about those events are listed on the testing section of the Delaware coronavirus website at: https://coronavirus.delaware.gov/testing/, so get tested and know your status.

Also on Friday, officials reported an additional 121 positive cases of coronavirus disease 2019 (COVID-19) in Delaware. The good news is there were no additional deaths reported, however, 58 individuals are currently hospitalized due to COVID-19 in Delaware, 11 of whom are critically ill.

The total number of positive cases has increased by 121 between yesterday and today and there’s an explanation for the high increase. 111 new positive cases were reported to health officials on July 9. The remaining 10 positive cases are from test results reported on prior days, but processed into the state’s health surveillance system on July 9., according to a news release.

According to state health data, 6,949 people have recovered from COVID-19 and a total of 517 Delawareans have passed away due to complications from COVID-19. The break down is as follows: A total of 249 individuals were from New Castle County, 92 were from Kent County, and 176 were from Sussex County.

So yea, you’re not the only one going though this. We are all human and we all have to get through this together – no one is in this alone. No one.

What you need to know:

If you are sick with any of the following symptoms, stay home: fever, cough, shortness of breath, sore throat, muscle aches, fatigue, chills, shaking with chills, loss of smell or taste. Other symptoms such as headache or digestive symptoms (vomiting, diarrhea, abdominal pain or lack of appetite) have been identified as potential symptoms related to COVID-19 and may prompt further screening, action or investigation. If you are sick and need essential supplies, ask someone else to go to the grocery store or the pharmacy to get what you need.

If you believe you have been exposed to someone with COVID-19, or have symptoms of illness, make sure to distance yourself from others, particularly vulnerable populations. Older adults and people of any age with serious underlying medical conditions – including serious heart conditions, chronic lung conditions, including moderate to severe asthma, severe obesity and those who are immunocompromised, including through cancer treatment – may have a higher risk for severe illness from COVID-19.

Individuals who have complaints about individuals violating public gathering restrictions should contact state or local law enforcement. Concerns that a business may be violating operating restrictions should be directed to: HSPContact@delaware.gov. Questions related to business re-openings or operations as businesses reopen should go to COVID19FAQ@delaware.gov.

Individuals with questions about COVID-19 should call Delaware 2-1-1, individuals who are deaf or hard of hearing can text their ZIP code to 898-211, or email info@delaware211.org. Hours of operation are 8:00 a.m. to 9:00 p.m. Monday through Friday; 9:00 a.m. to 5:00 p.m. Saturday and Sunday. Medically related questions regarding testing, symptoms, and health-related guidance can be submitted by email at DPHCall@delaware.gov. Questions regarding unemployment claims should be emailed to: UIClaims@delaware.gov.

In addition, the Division of Public Health asks any Delaware health care, long-term care, residential, or other high-risk facility with questions or concerns to email: DPH_PAC@delaware.gov or call the DPH Call Center at 1-866-408-1899 and press ext. 2.

For the latest on Delaware’s response, go to de.gov/coronavirus.