My mother is 85 and living in her home. She has dementia, not yet at the middle stage. She has significant short-term memory problems and is losing some of her longer-term memory cognition. By the same token, she is perfectly physically healthy, and still plays golf and tennis and takes daily walks.
My sister and I both live 2 hours away. She is being cared for by 4 aides/companions who provide 12-hour per day care, which we feel is safer than assisted living or memory care, considering the outbreaks we are seeing in long term care facilities. My sister and I are managing the 4 aides, who we pay directly (there is no agency involved).
If one of her aides tests positive or one of her other (very few) other contacts tests positive, my mother needs to be quarantined. Has anyone had to do this with someone getting in-home care, especially independent in-home care?
My mother has a vague understanding of what Covid is and knows that she has to not mix with people now. She doesn't remember the disease's symptoms or understand its potential severity, and if she had to quarantine, she would constantly forget the rules she has to follow.
We're trying to plan for the the next few months, but don't have an effective plan.
My sister has vehemently opposed moving in with my mother for 2 weeks, in part because of she doesn't want to risk being exposed (and our state has the lowest infection incidence in the country right now). Other possibilities would be for me to move in and take care of her (and that could destroy my business if I did so, and also put me at risk), or bring her to my house and try to lock her down here. She would be hard to manage and very confused at my house in a quarantine situation.
Does anyone have any suggestions?
I might just add a few things my family did in case it helps you.
I have two family members using regular aides for home help. Neither wished to reduce their activities & neither cognitively can plan appropriately. My sister even had symptoms at one stage, refused to be tested, kept going out & had our elderly parents visit her. Luckily she did not develop Covid for all their sakes. I have been dealing with what I can do/what I can't control too.
You have regular aides. Good.
Are you registered with an Agency as backup - in case aides get ill?
PPE. Are the aides wearing masks? If not, do they have quick access to masks & gloves if needed? (If precautions needed ie if anyone was exposed).
Do you & sister have access to PPE? N95 masks, gloves & gowns if required for an emergency visit to Mom if she became ill & had no help? Have a kit in your car ready to go.
Do you have an easy to understand printout for Mom?(We have a website with an easy english version for disabilities/cog impaired).
If Mom gets into a self-quareteen situation, I would set up regular phone call support from yourself & sister. Keep her spirits up & from getting bored wanting to go out. There may be Health Dept calls to check in too?
My plan is for my relatives to stay at home, with their regular aides. If any symptoms, use PPE. If symptoms, have the mobile testing service visit (they do this in my city for elderly/special needs). If positive, stay home with aides in PPE - if they will come! If not, it would be an EMS situation or family move in to provide care. If needed my DH & I decided we would go be live-in carers for our parents/sibs but this leaves our own children without one/both of us & our income/s so this has to weighed up. If hospitals are not overrun (there are not here) then I would call EMS instead.
If your Mom becomes positive, this will be your dilemma too. Family care or seek hospital treatment early. Being 2 hours away will have an influence, as will any health conditions you & your sister have & your own family responsibilities.
Best of luck for this stressful time. Planning + hope + luck . It's all you can do.
The first thing, and this is important for people on this board to know, is that if you have an aging parent who tests positive and has symptoms, have an ambulance take them to the emergency room. My plan is to tell them by phone that she lives alone, has caregivers who are not willing to care for her while she's symptomatic, and pressure them to admit her. I've been told that they are likely to do so by both an MD and a drug/vaccine development researcher. My mother's age and dementia diagnosis should be enough if the hospital has room. So that is my plan if she develops a mildly symptomatic case.
I recommend taking the same tack to anyone else who is taking care of someone elderly who comes down with Covid. Most will have age plus other risk factors, so press like hell to get them admitted. Use the person's PCP to pressure them as well. Aged people can go from being mildly symptomatic to being in a dangerous state in a matter of half a day or less with Covid.
Here are the current admissions standards, per my friend involved in drug development. At least 20% of dementia patients have cerebrovascular disease, and most people who need care will meet more than one of these conditions:
Consider hospital admission for the following findings:
- Any patient with dyspnea or increase respiratory rate (≥30 breaths per min)
- Any patient with oxygen saturation ≤ 94% on RA or decrease in saturation to < 90% with ambulation
- Overall clinical concern by ED attending for risk of outpatient failure based on high risk for complications from severe COVID-19
- Established risk factors:
Age 65 years or older, serious cardiovascular disease (heart failure, coronary artery disease, cardiomyopathies), chronic obstructive pulmonary disease, diabetes, malignancy, obesity (BMI ≥30 kg/m2), chronic kidney disease, immunocompromised state with solid organ transplantation, recipient of immunosuppressive therapy, pregnancy and sickle cell disease.
- Possible risk factors:
Asthma (moderate to severe), cerebrovascular disease
***
The quarantine is the question. My mother has only a vague idea of what is going on, and continually breaks the distancing and mask rules. I wrote up a summary sheet of symptoms and distancing/protection practices and had the aides post it in several places throughout the house, but she forgets its content 5 minutes after she reads it.
Her risk is mostly from her caregivers, but as I watch the infection rates rise, I wonder if they are going to keep themselves safe enough (and they are all significantly overweight, putting them in the high risk category themselves). My mother's area's infection rate is low, but I am watching it rise at an exponential rate.
Like you said, I'm not sure there is an easy way through this. We couldn't find an agency that would take care of her where she lives before Covid came on the scene. We may be able to dig one up in our spare time (and spare time doesn't exist).
I don't think there's any way we could keep our mother in her house alone - she won't remember that she needs to quarantine.
Thanks for the recommendation on gowns - the other PPE is already in the house, although I think the aides don't like to wear it.
Our travel to her area would put us at higher risk, and none of us knows who Covid will bite, despite those who think they're immune (I know some people who've been surprised and wound up on ventilators or become long haulers who didn't think they were at risk).
Like you said, it's a tough, tough situation right now.
Some people much younger and healthier than my mother have not done proper planning or taken precautions, assuming that they'd deal with it when it happens or that it simply was unlikely to happen to them, and have wound up in a coma or on a ventilator from Covid.
I know Mark Twain's old expression, "I am an old man, and have known great number worries, most of which have never happened."
I thought that was accurate until my brother went to prison in a country 12,000 miles away, then my daughter died in an accident, my wife probably had an immediate nervous breakdown, we had a flood within a month, my wife ran way leaving me with the surviving kids, my youngest sister became psychotic and my well sister and I needed to get her into the hospital and then long-term treatment while fighting with her while my father was going downhill (later diagnosed with Stage IV cancer while our sister was in long-term psychiatric treatment), my father died, leaving me with 50 years of disorganized paperwork that took me 2 years to straighten out (including finding all his money, LTC policies, and even included having to cancel 45 credit cards and finding some gold coins hidden in the basement) and a mother with dementia.
So the things that I worried about did happen, and in a relatively short period, often simultaneously. Most could not have been prevented with planning, although some could have been made easier with planning (even moving my father's assets into my mother's name during the month he was in hospice before he died saved a lot of time, because it would have been harder after he died because of estate laws even though it was miserable to do).
I have no idea how to estimate the chance that my mother will need quarantining, but we are not planning in case an epidemic arrives. It is here, with a vengeance. This winter is projected to be the worst public health event in 100 years, hospitalizations are shooting through the roof, hospitals throughout the country are overwhelmed and can't even get staff (in my work, I'm speaking to people struggling to find nurses and other healthcare providers every day), so I think that this is time to do some planning.