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rosadelima Asked November 2021

Getting help amid the pandemic/other issues. Does anyone else share these fears?

My sister and I provide caregiving for our 96-year-old mom in her home. We split the week every week. She’s always been adamant that she doesn’t allow “strangers” in the home. Up to now it’s been possible to manage without outside help.


But this past week she’s weakened, she’s more unsteady, losing her balance, barely making it upstairs with help.


I am absolutely certain that she will continue to vigorously oppose anyone coming into the house to assist her.


But separately from that, I am so afraid of Covid. My sister and I have insulated her from the public since March 2020. Despite her vaccinations, I think she would die from covid quickly in her current state.


Does anyone else share these fears? When does the need for care override the risk of possible infection?


I realize there is no one solution that fits everyone. I’m just reaching out.

lealonnie1 Nov 2021
The media has tried their best to keep us living in fear for the past nearly 2 YEARS. The virus is less deadly than the fear-mongering they've managed to cause! Your mother is 96 years old and has already lived a very, very long life. Something will ultimately kill her, whether it's this virus or a pneumonia virus or plain old-age itself, that's the truth. Being too afraid of covid to allow help into her home is going to wind up killing YOU and your sister, in the long run, or giving you mental health issues from compassion fatigue & burnout!

If you have mother's bed moved into the living room, she can no longer 'refuse' to have it moved into the living room and will have no other choice but to begin sleeping in her bed located on the first floor. Climbing the stairs every day is a recipe for disaster.

If you hire help to come into her home, PERIOD, and give her the choice of having help or being placed in managed care, she may just accept the help, miraculously.

IMO, it's time to use some well justified Tough Love with your mother. She no longer gets to call ALL the shots in her life b/c her reasoning skills no longer make sense. What SHE wants and what's best for her safety are two different things right now. The main goal is to prevent her, as much as possible, from falling down the stairs by placing her bed somewhere on the first floor. By bringing in help to relieve you and your sister and to help mother bathe, prep food, etc. Have the help wear a mask inside the home if that makes you feel better. Then let the chips fall where they may.

If it makes you feel any better, my DH & I have been in and out of hospitals for the past 18 months, with him being admitted 3x and spending a week or more inside a hospital each time. With me visiting him; with me getting 3 procedures done myself, endless appointments, etc. Neither one of us has contracted Covid, in spite of ALL the interactions we've had with the medical community, in hospitals WITH Covid patients present, etc. We've also been going out to restaurants every week (after he recuperated) and he's been to concerts, I go shopping all the time, and life has gotten back to normal for us. And still no Covid. I think it's unhealthier to live in fear of what might happen than it is to get back to living life. BTW, my mother is 95 in Jan and lives in Memory Care AL and has not contracted Covid either. NOBODY in the entire ALF of 125 residents has even been to the hospital for it, and nobody has died. The oldest resident is 102.

Wishing you the best of luck looking at the big picture of you and your mother's needs rather than the small picture of a virus with a very high survival rate.
funkygrandma59 Nov 2021
Very well said lealonnie1. All this fear mongering has got to stop. We must all get on with our lives, as a lot of us know all too well how very short and precious life is, and not a minute of it is to be wasted.
cxmoody Nov 2021
I had to quit being afraid of my mother’s reactions, once and for all.

I am a 57 year old woman, now charged with keeping another person safe.

If she weren’t my mother, I wouldn’t fear her reactions. I would just keep her safe.

Maybe tell the little kids inside of you and your sister that you’re adults now, and have to keep your “client” safe. Then, just do your job.

She can’t put you in the “naughty chair” any longer.

It’s an awfully difficult shift in thinking, and it takes some time, but it’s VITAL for you to make.

Best wishes.

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funkygrandma59 Nov 2021
First I have to say that living in fear of anything is not healthy for anyone. And if you've all gotten the shots, why such fear, unless you're not confident in them?
You are now at the point with your mother that her safety and well being must override anything else that is going on. And if that means bringing in some outside help for her, then so be it. You may have to tell her that if she doesn't agree to that, that you and your sister will have to start looking for the appropriate facility to place her in.
And whether or not she likes it, if she continues to stay in her home with outside help, she needs to have a bed now downstairs, so she doesn't have to climb her stairs anymore as she is now a fall risk. You can also put a bedside commode next to her bed so she doesn't have to travel far to use the bathroom.
You and your sister will now have to be the "bad guys" and put your feet down as to exactly what needs to be done as far as her care is concerned, as like I said earlier, her safety and well being must be your number one priority.
I wish you the very best in getting everything figured out.

Midkid58 Nov 2021
So--I assume she has not been vaccinated? Once I had my 2nd (and now 3rd) covid vaccine I felt the huge burden of fear lift from me. Now all but one of my grands is vaccinated and we all feel so much less anxious.

As far as mom---she can REFUSE all she wants, but sometimes you have to treat your parent as you would a small child. They just HAVE to go along with the plan and deal with the tantrum that may follow.

At 96, yes, your mom is high risk for covid, but with proper vaccination (which she would HAVE to have to move into a NH) she would be OK.

We're 'there' with my mom, too. She's slipping, slowly but surely. I await the call that she's fallen and broken something--I feel it coming. That will be the factor that takes her out of her apt. and into a NH.

Put earplugs in and ignore her tantrums. Do what needs to be done and move on. Closing off the stairs is a great idea..kind of a out of sight, out of mind thing.
AlvaDeer Nov 2021
The OP does say that despite their all having their innoculations she fears Covid-19 due to her Mom's advanced age. I agree with her, that it's a concern. I will be 80 next birthday, and while I have resumed my life I am very careful out there. Even the innoculated can easily et Covid-19 though they are likely very protected from the Covid pneumonia that kills. I think it will be a reality in our future, and perhaps even more novel viruses. Other than being careful and seeing MD at once for any symptoms I honestly don't have any recommendations for this OP, but sure do sympathize.
Daughterof1930 Nov 2021
Sounds like you’re one of many waiting for a bad event that will force change. And it will happen. What you can do now is honestly tell mom that your continued help is dependent on her getting a helper to come in at least part time. She doesn’t see a need to change because you’re doing it all. Stop fearing her wrath and back off some, sooner or later she’ll see the need. The fact is, you need to guard your own health too. We hired a helper right before Covid, everyone was careful and she was a godsend.

KPWCSC Nov 2021
While I don't "live in fear" as so many people put it, I do share your fear of my husband getting COVID. I do not fear his dying because like some have said he will die of something. I can not knowingly put him at risk of not having me involved in his care. We both would have to pay long term consequences especially if he were hospitalized and transferred to a nursing home because he would be isolated and risk severe neglect due to under staffing, etc. He does not even understand how to use nurse call button and would fall if he tried to go to the bathroom unassisted. Even the best NH with the best staff can not provide 24/7 individualized supervision of every resident. There is a bill in Congress called H.R. 3733 called the Essential Care Act that would allow each facility resident name two people who would be allowed up to 12 hours a day to be with their loved one in situations like the Pandemic (using same precautions as staff). Too many people have suffered. Please contact your Representative and ask them to co-sponsor H.R. 3733... it is a very bipartisan bill that can benefit anyone who needs a higher level of care. Only 13 states have representatives who have stepped up to support this bill to even get it to the floor for a vote. Every patient deserves an advocate to speak for them. We are not visitors, we are their voice! Check out...
https://www.congress.gov/bill/117th-congress/house-bill/3733/cosponsors?q=%7B%22search%22%3A%5B%22hr+3733%22%2C%22hr%22
%2C%223733%22%5D%7D&r=1&s=1
https://cmscompliancegroup.com/2021/07/01/hr-3733-federal-essential-caregivers-act-introduced-to-congress-what-to-know/
CTTN55 Nov 2021
The bill's summary: "Under the program, facilities must allow each resident to select up to two essential caregivers to provide daily living assistance, emotional support, or companionship during the emergency. Facilities must afford such caregivers 12 hours of access to residents each day (or unlimited access for end-of-life care), and caregivers must agree to follow facility protocols for staff safety. Facilities may deny access to caregivers who violate protocols, subject to certain notification requirements; the Centers for Medicare & Medicaid Services must establish an appeals process relating to such decisions and may take specified enforcement actions against facilities that violate the bill's requirements."

I would think facilities will love this, as they will be able to foist their duties off on the family members.
bevthegreat Nov 2021
I would hire Caregiver Help and Mom needs a bed downstairs before she falls

Grandma1954 Nov 2021
If she is not able to SAFELY live in her house she is going to have to make a choice soon.
Move in with you or your sister
or move into Assisted Living
or allow someone to come in and help her 24/7.
The next thing that will happen is that she WILL fall and that will result in a hospital stay then a stay in rehab. (if she survives the fall and or surgery)
You can try to make the house safer.
Move her bed down stairs so she no longer has to climb stairs. Convert a dining room or living room into her bedroom. If you have to close off the stairway so she can not go up stairs.
If there is a bathroom downstairs that becomes he main bathroom. If it is a "powder room" and no shower look into having one put in or you begin bed baths.
rosadelima Nov 2021
It’s so hard because she just REFUSES all those ideas: moving a bed downstairs, etc etc. it feels like something really bad, like a fall, has to happen for anything to change here. Both my sister and I try to encourage her to use a walker, change her clothes, so many things and she gets mad and refuses. Then she’s angry and nothing has changed. It’s amazing how strong-willed she is.
polarbear Nov 2021
Rosedelima, you wrote: "I am absolutely certain that she will continue to vigorously oppose anyone coming into the house to assist her."

My reaction is: So? She doesn't know and doesn't care that she working her two not so young daughters to an early grave. That is unacceptable. She doesn't get to decide, not even a vote.

My mom was that way, too, but she came around.

I started out gently. The first time I had the newly hired caregiver come, she came only for a short visit, as a family friend, and gave my mom a small gift, to buy her good will. The second and third time, she came to offer to take us all out for a short shopping trip. The fourth time, she came and offer to take only my mom out for a short trip, etc. Eventually, my mom got used to her. It wasn't all smooth sailing though. My mom started refusing to go with the caregiver after a month or two, so we stopped for awhile, then started again, and now she likes the caregiver.

You can slowly introduce your mom to the new caregiver as a friend who comes over for social visits, then slowly assists her with small things, then more and more. Your mom will come around.

As for your fear of mom catching covid, have everyone wear masks, wash hands, etc.

RetiredWorking2 Nov 2021
Hi Rosadelima, I have walked in your shoes and I want to believe that help is on the way. I've been taking care of my mom and disabled sister for well over 15 years. Two years ago I moved them out of their home and into mine since I was retired I thought it would free up some time if I did not have to drive 45 minutes three to four times a week. What I now have is two people who will do absolutely nothing for themselves and it's overwhelming and heartbreaking. My mom is 98 and is still able to get around. I purchased a stair lift since I could not find a home with a single level. I went from retirement to literally working 16 hours a day 7 days a week. So I started searching for help again. It's frightening to think that someone would come into my home if they were sick and I've demanded that anyone entering wear mask at all times. I've sought assistance through Health and Human Services. Senior Care, Senior Helping Seniors which is just a couple of avenues. Whenever I have someone in to assist I am present for both safety and security reasons. I guard my mother's health by making sure she gets vitamins, probiotics and fiber everyday. I make sure that all the healthy things, fresh fruit, and vegetables are in their diets everyday. They get three hot meals a day and I clean bathrooms, make up beds and wash dishes three times a day. In addition to caring for two very large dogs. I've asked the other siblings for help if they could just come by once or twice a month give me a break and their excuses are they don't want to pass on any sickness since they are out in public and my mom and sister have been sheltered. So what's the answer. I am diligently searching for assistance either through our insurance or if I have to pay out of pocket. Our primary care physician and a social worker at the hospital have assisted us in (suggesting) services but some the services have no follow-up. I am going to continue to seek someone or a source that practices absolute safety with regard to colds flu, covid and get help before I need help for myself. If it becomes too overwhelming you or might I say I understand that I can't take care of someone else if I'm stressed out or sick.

Suggested resources: Department of Aging for your state or local
Department of Health & Human Services
Seniors Helping Seniors
A Place for Mom (they were wonderful)
CareGivers.com
In the interim you and your sister could take turns giving each other a break every once in a while. I wish I had that. BE BLESSED.

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