My FIL is in a memory care unit not far from us. He’s been there since September. He has been nothing short of amazing by accepting his Parkinson’s has made it impossible for him to safely live independently. It was extremely difficult to accept, but he allowed my husband and myself to find him a suitable place. We selected a faculty based on ratings, research, and a lot of conversations with staff. We haven’t been able to see him since he moved in mid-September. We do speak to him at least twice weekly, but his Parkinson’s related hallucinations and delusions interfere (he says staff trying to kick him out/bugging phones to listen in, teenagers running around the unit, etc. It’s heartbreaking). On January 9th, my husband received a generic email saying 14 memory care residents have tested positive for COVID, and our LO was one. Nowhere did the email mention if he was showing signs, when he tested positive, how he was doing, and what actions are being taken for the 5 staff also testing positive. We were very upset at this approach. My FIL pays them nearly $9,000 per month, and we feel we should be getting personally communications in relation to these types of issues about our LO. When we emailed them with our displeasure we did receive more concrete answers, and the coordinator’s personal cell number to call “at anything to discuss this more or if you have concerns.” They reassured us if anything that was a medical emergency were to happen we’d be personally notified. We don’t mean to be obtuse, but isn’t testing positive for COVID in your 70s with complex medical needs considered at the very least a medical concern? Should we request more frequent updates (emails are fine) when my FIL can’t update us due to his hallucinations or delusions? Should we ask for a weekly virtual visits? Are these reasonable/unreasonable requests? We’re looking for suggestions to help alleviate our anxieties. Thank you for your time.

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I would definitely complain. Your father in law's health status is not to be discussed in a general email. In my FIL's facility, we are notified of positive CoVid cases having been identified on the unit AFTER the families of the infected residents have been notified. And we aren't told which resident or worker has tested positive, just that someone has tested positive "on the second floor" and what steps are being taken to keep the infection contained.

Ask for virtual visits. Have the person responsible for his health decisions call the treating doctor directly and frequently for updates. Tell the facility that HIPAA requires that they not broadcast anyone's health information in a general email. You are not being unreasonable.

Facilities are struggling to keep the staffing levels up due to the pandemic. We found they were often using temporary help who might not be as well trained. Be assertive in making sure your FIL is being properly cared for.
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Reply to Marcia732

What I have found in my mother's Memory Care AL from 2x weekly testing of both residents AND staff is this: they get a few 'asymptomatic' positive covid test results during the first weekly batch, then they're all negative during the second weekly batch. Which tells me they were false positive test results to BEGIN with.

Disclaimer: I'm not an expert on covid. All I do know is that since we've been dealing with this pandemic since March of 2020, there have been NO real cases of covid at my mother's Memory Care. Just 'cases' of 'positive tests' where the people were 'asymptomatic' and never developed symptoms. Said people were quarantined nevertheless and all was well. This, in a place that houses 100 residents in AL and 23 residents in Memory Care, not counting staff. NOBODY has had a REAL case of the virus in the whole time, nor has anyone died, nor has anyone gone to the hospital.

A Covid 19 'case' is supposed to be a SICK person with symptoms of the virus. Not a person who's 'tested positive'.

A 'positive test' does not necessarily mean the person has Covid 19. It could be a false positive, since testing is done SO frequently, or, it could be 'asymptomatic' Covid 19.

Yes, the MC should have given you more details. Yes, you have every right to 'bother' the management as often as you'd like and ask them as many questions as you'd like. For $9K a month, they should be calling you every hour on the hour with updates, for crying out loud

FWIW, when the ED of my mother's AL sends out emails, they're not breaking any HIPPA regulations at ALL and all the email addresses are kept hidden, of course, for obvious reasons.

I hope your FIL continues to stay well and doesn't come down with The Virus. That's one side of my thought process; the other side says I wish they'd ALL come down with the virus and pass quickly, quietly & painlessly in their sleep during the night so the nightmare that has become their lives in advanced old age & infirmity will blessedly come to an end. But that's not my choice or my decision to make. Just something I think about quite a bit these days, with my mother turning 94 this month, in a wheelchair full time, with bad neuropathy and moderate/advanced dementia. And about 10 other issues I won't even mention. Sending up a prayer for everyone who is living through life these days, in managed care, or caring for someone in managed care, and for all of us who worry about ALL of it.
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Reply to lealonnie1

First and foremost, sending a generic, group e-mail probably breaks all kinds of HIPPA regs about confidentiality, depending on how much personal information was contained in the e-mail. Hopefully, they at least BCCd all the addresses and did not mention patients by name or some other identifying information (room number, medical record number, etc.).

Next, they should inform you of the symptoms, if any, your FIL has and any treatment and/or isolation that is being imposed, not just for him, but for the entire facility. Sending out the facility's isolation plan, including preventive measures for residents and staff plus visitation restrictions via group e-mail or snail mail would be OK and give you something to which you can refer. BUT, you should receive, via phone call and/or e-mail, the specific interventions being taken for your FIL. Then, whenever his status or treatment changes, you should be notified by a nurse or physician/NP/or PA.

Does he have a do not hospitalize or do not resuscitate document in place? Some people do not wish to be hospitalized when they already have a degenerative disease and can no longer care for themselves. They might prefer to remain in a familiar environment with familiar caregivers, even knowing that these will be their final days. Has he considered hospice? These are decisions he should make before he can no longer make them and they should be in writing and notarized. If they haven't been completed, they should be able to arrange for this at the facility. Most states have a DNR form on-line that can be used if the desires are straightforward. Also make sure he has a Durable Power of Attorney for Healthcare, not just a Durable Power of Attorney. DPA can usually make decisions only about money issues.

When I was working as a Geriatric NP in LTC, I contacted the primary contact of any resident for whom I was responsible every month and as needed with a new diagnosis, abnormal labs, changes in medications, etc. Many times I did not actually speak with the responsible person but left a voice mail. Some responsible persons requested just a note saying that everything was the same. This is the least you should expect from a facility that charges $9000/month for care. Check your contract so you are aware of exactly what they have contracted to provide and how frequently.

Are there physicians, NPs, and/or PAs on-site at the facility? If so, do they charge separately or are their services included with the $9K? I worked for a company that was doing a trial Medicare program in LTC facilities and we billed Medicare direct for our service.
Why isn't your FIL being treated for his hallucinations/delusions? There are definitely meds that can help with this.

If you are not receiving adequate notifications of his health and feel that his care and/or communication is substandard, you should contact the Ombudsman for the facility. This information should be readily available--most facilities post the information near the front entrance, or on each unit. If you cannot find it, ask the social worker, director of nursing, or the nurse on his unit. If they don't know they should be able to find it within minutes. Sometimes just asking for the information will get you results.

Prayers for your family and FIL as you adapt to all these changes. May you have His comfort and peace.
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Reply to Margaret51
Mares1155 Jan 10, 2021
Hello Margaret,
Thank you for your kind response. The facility has given us a weekly update via newsletter. My FIL is receiving medications for his hallucinations/delusions. One of the reasons we selected his facility is because they do have a nurse, several nurses aides, and the coordinator who are all there daily. We do get calls if he’s had a fall or bump/bruised himself. But we do check in with him. We wouldn’t mind if they wrote a quick email or left a VM. He has blood draws from an outside source to make sure his medications are working. He’s not terminal, but he’s definitely decreased in cognitive and motor functioning. He is healthy otherwise. My husband is his POA. My husband did ask his uncle to be duel POA but his uncle declined. We simply don’t trust (or I don’t trust) my SIL to even be remotely responsible to help with his money. But that’s for another post.

We do need to speak to him about a DNR and final arrangements. But that’s for his daughter and son to figure out. And that’s for another post entirely. Thank you for your kind response! God bless you!!
COVID-19 is very easy to get infected with. Most people are infected by someone who is not even aware he/she is ill.

70% of people will have milder illness - feel like they flu or an upper respiratory illness. They will be over their infection usually in 2 weeks, but it may take up to 6 weeks for him to recover. The staff in the long term care unit will keep your loved one isolated from uninfected residents. That may mean that he will be in a room by himself with a closed door. With so many residents having COVID, he may be placed in a "wing" or "unit" with other residents with COVID. The unit will be isolated from the rest of the facility. You will not be allowed to visit until he does not test positive for COVID. You should be able to call and get updates on his condition. If he talks on the phone, expect him to be a bit winded and tired.

30% of people will have more severe symptoms: feeling bone tired, have difficulty breathing, higher fever. Some may have flu-like symptoms like diarrhea. Some have inflammation issues that can trigger the blood vessels creating poor circulation to fingers, toes, heart, brain... These folks will usually need hospitalization. Not everybody in the hospital needs a ventilator, but most of these folks will need some oxygen and treatment requiring nursing care and frequent doctor evaluations. Pretty much anybody that meets this criteria in long term residences will be sent to the hospital. The long term care residence will notify you when they are being sent to the hospital. Expect that your loved one will be sent to the nearest hospital with an ICU bed available via ambulance. Again, you will not be able to visit your loved one in the hospital, except if your loved one is expected to perish from this infection.

3% of people do die from this illness. They are the ones in the hospital that require a ventilator and their bodies just can't fight it off. Most often, hospitals will notify family or the person with a medical POA that the loved one is not doing well. Expect to wear facemask, booties, bonnet, gloves, and gown to visit. Sometimes, you can be there when the loved one is removed from the ventilator to say good bye. These people will not regain consciousness and perish quickly.
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Reply to Taarna

My GF contracted COVID while hospitalized. When I voiced concern to my daughter about her dying because of her Parkinson's, my daughter said Parkinson's is neurological not physical. Her diabetes and her heart problem were more underlining factors. And she had been on chemo. She pulled thru, only to pass a few months later from Cancer.
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Reply to JoAnn29
DrBenshir Jan 10, 2021
FYI Parkinsons is a neurodegenerative condition that can cause polyneuropathy. There is no such thing as "neurological not physical." Nerves and the organs they control are most definitely part of the body. Also, covid-19 has been known to cause neurological disorders sometimes as a primary symptom. That is one way that covid patients get into the health care system without being isolated - they don't test positive yet and are admitted and treated for their presenting neurological condition.
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My husband's LTC/SNF calls me everytime they have positive results and if it is a resident or staff member. They didn't call when they gave my husband his first covid19 vaccine 2 weeks ago yesterday. I wouldn't like to just receive an email. The only way I found out about the first shot was when a nurse called yesterday morning about DH and I had to ask if he had gotten any vaccine yet. They had found Joe unresponsive at 6:50 a.m. Now we are starting hospice finally as of yesterday. He had started to get better yesterday afternoon. Thank God. I asked for hospice last June. I'm not too happy with them right now.
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Reply to WolfeyKat62
JoAnn29 Jan 10, 2021
" In LTCFs, consent or assent for vaccination should be obtained from residents (or the person appointed to make medical decisions on their behalf) and documented in the resident’s chart per standard practice."

This was in an article I found. Seems there is a problem that the laws have not caught up with the rights of residents. So no legal information on the subject. There have been allergic reactions. Someone allergic to eggs should probably not be given the shot. I would ask why you were not asked to sign a waver. For no other reason than to protect the facility.
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I know how upset you are by the "general" email and it would have been much tbetter for the facility to have personalized the message but I believe the response from Geaton777 is pretty accurate. Even if this is not their first experience with Covid, I can guarantee the staff is running around like loons. Regardless of the amount that you are paying for FIL's care monthly, you can be assured that the staff that does the "real work" (CNAs, laundry staff, kitchen staff) is underpaid and understaffed at the best of times. Now ... some of them are ill or can't get to the facility and the staff is even more handicapped. Add in the logistical nightmare of having to figure out how to guarantine and isolate your covid residents while you attempt to safeguard the remaining staff..... well you get the picture. In the midst of a national pandemic, once a resident or a staff member shows systems or tests positive for Covid, it is probably now standard procedure to test all residents (regardless of their underlying medical conditions) and staff, with families being notified once the results have come in.

If your FIL can participate in virtual visits with minimal staff supervison that may help you feel a little better. Ask your contact at the facility if very brief weekly updates could be managed without overstressing the staff; of course, you need to be notified immediately via phone or text of any emergency issues with FIL.

These are scary times and the waters are somewhat uncharted even after almost a year of the pandemic. I wish your family including FIL the best during these difficult times.
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Reply to geddyupgo
Mares1155 Jan 10, 2021
Hello Geddyupgo,
Thank you taking time to respond to our post. We do want to make sure the safety of everyone is considered top priority. Of course, they are probably scrambling around trying to take care of everyone. They are on their own unit so it’s already sectioned off. They are quarantine in their own rooms. They do get checks every 30 minutes and monitoring his food and drink intake. That’s a huge relief. We guess we’re just very protective of his since his mental state has declined a lot. God Bless You!
If this is the first foray with covid for this facility, I guarantee the staff is running around with their hair on fire, tending to the varying degrees of illness, plus continuing to care for non-covid residents, changing PPE continuously and trying to communicate to families. Most likely it was brought in by someone on their staff, and it's possible they are now shorthanded to boot. This is how it was in my MILs facility this past May when she and 16 other LTC/MC residents got sick. Nine residents died. My MIL was extremely sick for 4 weeks and then had an abrupt and complete recover, thank God. I don't think Parkinsons is the kind of underlying condition that makes covid more of a threat to his health and recovery. You are not wrong for your concern. But do not visit him in person until he is covid-free. Do not ask for anything that takes the staff's time and energies away from focusing on the residents. It will be hard to watch from the sidelines, but you must allow them, including the admin, to do what they have to do with the least amount of demands from you. Send supportive emails and then politely ask for any updates on your FIL. Send them food, ask how you can help. My family purchased and assembled 300 face shields (back in the time when PPE was scarce). Everyone is clambering for the facility's time and attention and it just doesn't help. I wish you peace in your heart and a full recovery for your FIL.
Helpful Answer (10)
Reply to Geaton777
geddyupgo Jan 10, 2021
What an accurate and thoughtful reply!! Well done.
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