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WatsonMaco Asked June 2020

My mother is emotionally suffering from lockdown in independent living. It has been 3 months. No end in sight. Zoom not the answer. What is?

I am so angry that people and govt don't call it what it is...3 months of quarantine! Facility bound by state laws. But they should start figuring out ways to reopen. The isolation is maddening. She says she would rather risk getting COVID than live her life like this. If I took her in it would ruin my marriage. It's maddening and heartbreaking for her and so many others. Isn't anyone listening? No mention of this crisis in AARP. Crazy!

polarbear Jun 2020
I share your anger 100%. Trying to keep people alive by putting them in solitary confinement is equivalent to killing them slowly and cruelly.

What good is life if you're dying mentally in anguish, despair and hopelessness.
dogparkmomma Jun 2020
So bring them home, and don't isolate them or yourself. There are things worse than being dead. In facilities, they are not in solitary confinement. They might be in their rooms but staff is there and trying hard to cope with their own fears while taking care of the people in their care. It is not the same of course but how much of the anguish, despair and hopelessness was pre-existing. Yes, this is a hard place to be, but focusing on the losses are not productive. The staff is trying to keep them alive. What would you want them to do? If you were a person who did not want your LO to die, would you be willing to put your LO at risk so other people could be out and about. We don't know what that would look like; but are you willing to have that happen?
WatsonMaco Jun 2020
HI all. Thanks for your responses. Just to clarify, mom is in the "independent living" wing of a continuous care community. She doesn't have staff around her...just a private aide for an hour in the morning that is otherwise booked. I talk with her every day. I don't want anyone taking risks, but keeping people isolated like this isn't the answer either. I feel good about a lot of their policies. I just think it's a lot easier for the state to say "quarantine the elder" than it is to find safe ways to help them socialize in very small groups outside, even. I get that if she were in assisted living there would be staff around, but the loneliness when that is not the case is maddening. I may bring her here, but we live out of state in a 1 bedroom apartment and we work full time, so not an easy choice. I've thought of quitting my job, but not a good idea long term. If I knew things would change in a month or two, I would be OK, but this is not how I see her (and so many others) living out what may be the rest of her life. I will try to be hopeful.
Thanks for all your responses. Best wishes to you and yours.
JennaRose Jun 2020
I agree with you that keeping people (elderly and others) isolated is not the answer. Facts state that more people have died from the flu compared to Covid. How come there are no lock-downs during flu season?

That said, my friends have told me that a few of their relatives passed away from either a heart attack, stroke, etc. and they are putting down Covid-19 on the death certificate, really? To boost the numbers to create more fear? Fear is the best way to manipulate people IMHO.

I wonder what is really going on behind the scenes? In my 63 years I don't remember any lock-downs.

Mental health is just as important if not more important then physical health. People have killed themselves over this virus from being isolated.

I find something very wrong with this picture.

Jenna

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Shane1124 Jun 2020
It appears this is truly a “damned if you do, damned if you don’t situation.
I understand everyone’s frustrations re the restrictions but somehow feel many would not be happy with either result.

While I understand those seniors are bored and isolated, what’s the option? It is what it is. The centers don’t have the staff to provide enough activities to keep your loved ones busy to prevent boredom. The centers are doing all they can to take care of everyone. Most have TV’s to watch to pass the time. Use the tools you already have but to expect more at this point is unrealistic.

It is hard for me to understand people’s complaints about this. Whatever kind of facility they are in are providing three meals a day, hygiene, etc on a daily basis. That is way more advantageous than others who can’t feed their family because they got laid off or whatever.

All of us are making sacrifices. While I understand everyone’s concern about dementia getting worse b/o “isolation”would you prefer they got the virus and had to be on a ventilator for 2 weeks and then die? Your parents say they would rather get Covid 19 over being in isolation for 90+ days? And that’s ok? That’s foolish. And to feed into that is just wrong.

Address your concerns with the CDC who is recommending these precautions. Staff can’t wave a magic wand and make it go away. Nor can they not follow recommenced guidelines.

To me it’s a small price to pay to try to ensure residents and the staff are protected. Give them a break! This Virus is all new and evolving.

I am sure I am touching someone’s nerve here but it’s how I feel. Make the best of what is currently in place and deal with it. Or take them home with you. Asking for ideas to help the elderly is fine, but most of the time having dementia those residents won’t even remember the efforts. And those old enough to remember WW2 are a lot more used to making sacrifices than we are.

I also realize many come here to vent and I get it. But geez Louise your loved ones are still alive! You and they will have to work through it.
helenb63 Jun 2020
'Whatever kind of facility they are in are providing three meals a day, hygiene, etc on a daily basis'... My mother and the other residents pay a hefty monthly fee for little or no service in their supposed AL. No one has cleaned their apartments for months. The on-site cafe is doing takeaways a few hours a day. My mum had to wait days just for someone to change a ceiling light bulb. The communal lounges and garden are barred off. Not many adult children can provide adequate care in their own homes, so that is not a particularly helpful suggestion. Even if we did, how would we go out to get food without putting the senior at risk again?

There's a difference between merely existing and having a life.
cwillie Jun 2020
I think the issue of neglect and downright negligence in any facility is different that the issue of isolation due to quarantine measures and they shouldn't be lumped together. Ultimately it is government regulators who are allowing facilities to make a profit despite not providing an adequate level of care and this is something that should be taken up as a battle cry not just by those effected - old people's lives matter too.
KaleyBug Jun 2020
I agree the rates for these places are crazy sometimes a $1-$5 an aspirin. They nickel and dime you above the the basic rate. Some will not allow you to use your insurance for prescriptions. You have to get them through them at their rate. It is time the elderly lives matter and the care is equal to the dollars you pay for it. The highest ranked one where we live, if you are all together is great. If you need assistance be ready to be wheel chaired out in front of the nurses station to sit without a TV and a tiny drink brought to you every so often.
Trixee Jun 2020
No offense, but I don't want y'all visiting in my husband's facility and putting him at risk because you can't seem to understand how disease transmission works. You don't get to risk my husband's life because you are feeling bad. You can take her out of the facility of you don't like it. Reopening has already caused infection rates to skyrocket. If you don't want them in "solitary confinement" take them out, but you don't get to risk others.
WatsonMaco Jun 2020
I am sorry about your situation and in no way did I mean to infer that it's time to get stupid. I do believe safety matters and, frankly, I do understand transmission and have read a ton about this disease. I'm 100% OK with visitor restrictions. I just think it's time to start thinking out of the box about ways to provide some socialization while staying safe if at all possible. I'm just tired of hearing "Zoom" calls are the answer when so many elders are not capable of handling computers or tablets and do not have help to do so. No one in her facility has had COVID for 3 weeks now. All of the staff gets tested weekly. So why can't we find ways for healthy, isolated people to connect with each other? Just my thoughts. I'm sorry if I upset you.
RubyTuesday71 Jun 2020
It’s insanity. Going through the same thing with my father. He was suddenly put on hospice 3 weeks ago. Nothing leading up to that and I can’t even be by his side during his last moments.

This is not how we should be treating our elderly. They are lonely and depressed
Bella7 Jun 2020
“Insanity “ is right!!! Going through the same thing with my parents also!!!
WatsonMaco Jun 2020
I don't want my loved one to die. I don't want to put anyone at risk. It may surprise you all that I'm the one wearing a mask when those around me don't. I will drop this topic. I've never posted anything before and I see now that it leaves too much for misinterpretation. We are all struggling through this and many of your loved ones are in worse shape than mine. I truly wish you all the best.
Bella7 Jun 2020
I really wish you wouldn’t drop this topic because something needs to change for our loved ones!! I don’t know what the correct answer is or if there even is one. Just because they’re old, and sick, have dementia, incontinent, and can’t see etc etc etc doesn’t mean their lives aren’t valuable. So sad at this end part of their life they have to experience this on top of failing health, living in a facility or at home.
I also want to praise the workers in my parents facilities, I could not do your job, and thank you for all your doing trying to keep our parents safe. This covid thing is devastating in so many ways.

Both of my parents have said they would rather have Covid than what they’ve been through in the last 3 1/2 months!
dogparkmomma Jun 2020
Well, as I see it, you have 2 choices. Or maybe 3. States are reopening; and the number of virus cases are increasing too. This is not just because of testing. testing would find new cases but the increased number of people in hospital is due to more people getting sick. So if people do not want to live their life shut in, they can go out. They should wear masks and social distance. If they don't want to, then they will likely get the virus and if they are elderly, they have a higher likelihood that they would die from it. My inlaws left their independent living facility a year ago as they needed more care. But I have heard that the facility they lived in had a lot of Covid cases and deaths; partly because of all the IL people coming and going.
The 2nd choice is to stay home and stop complaining that the state is not opening up. You can see the states that have not had a hard shut down and you won't like that result either.
The 3rd choice is to bring your LO to your house for the duration. Which could be a year since there is no vaccine and people in elder care facilities are likely to be low on the priority list.
My mother is in a facility. We did get to see her once in May but in our case, she really does not care if she sees us or not. My MIL died in October and we had been supervising FIL's care at local memory care. So we had not seen him for 3 months. He developed a UTI, went to hospital, and was really failing; not eating, very low blood count. Got him out of the hospital, back on hospice and he died at the MC 9 days later, all without us seeing him. Covid was not a factor in his death. Since he died, his facility, which had no cases until mid-May, has had 9 cases with 2 deaths.

Just saying that I do have family we cannot visit. The virus has caused life to change and I think a lot of that change will be permanent. But the other options of not sheltering at home, are options that I don't want to consider. Your mother might say she would rather die of Covid, but is that really true?

Tryingmybest Jun 2020
I hear your frustration but the facilities have an obligation to try and keep all the residents safe from covid, The guidelines have been created for that reason.

Yes residents are isolated from the outside world, but, at least in my Moms case, staff is doing a fantastic job with supporting and engaging the residents. Some residents are managing better than others but as Dogparkmomma said "... how much of the anguish, despair and hopelessness was pre-existing." My Mom was miserable and angry AND feeble before this all happened. Is she declining? Yes, but this lockdown has little to do with it, her decline was inevitable.

If they relaxed the guidelines chances those facilities would become infected with covid and that would insure massive loss of life. This virus kills the elderly. In our state nearly half the covid deaths were people in elder care facilities.

There are no good choices here but there are some choices worse than others. I would rather have my Mom kept safe from this virus. From what I hear covid is a terrible way to die.

medicaidmaze20 Jun 2020
I could have brought my sister home just before total lockdown-i guess I could also bring her home now if I thought I could handle 24/7 care-the answer is no. Sis is incontinent, she is having more behavior issues-maybe heading to late stage LBD-this was going to happen anyway eventually. Did covid and isolation bring on the behavior change sooner? will never know for sure. I am sad I cant give her a hug I am sure she misses me, hugs, contact and the fun stuff. maybe more so since all the other things that fill our life are no longer important to her or things she worries about-paying the bills, doing laundry, cleaning the house, getting groceries, trying to stay safe from the virus. Her emotional attachment is about the only thing left that she can express feel. understand. I keep telling her to be brave, stay active with PT and walking, take care of yourself-and we will get thru this-at least I hope we will. Her community has two positive cases with no symptoms-isolated weeks ago seems to have limited the spread for now. care giver brought it to the community-coming from being in a household where some one had it. Sis community has been good about communicating, getting sis on the phone a couple times a week. bringing her to the lobby window where we can talk via 2 phones with the glass wall in between. better than nothing else is possible. I can not do the work of 5-6 people who care for her every day, meds, meals, bathroom, getting up going to bed and working thru her meltdowns. I cant wait to meet those lovely ladies and give them a hug or a gift card or both they have earned it every ounce of my appreciation for their dedication and going to work every day-100/1000 times over. Her last community was simply awful I am sure sis would have been close to death by now at that place even without covid-sis lost 20 pounds in one month-not bothering to mention to me or supplement with protein shakes to slow the weight loss.i documented the loss with my own scale and ask them what is going on they say she is fine and there is no evident weight loss-not the only time they lied to me about care there. They did not care for her then and certainly would not expect them to change when no family is allowed to monitor or visit.
WatsonMaco Jun 2020
I so get it and share your struggles. I hope things get better for your sister sooner than later. Be well.
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