Follow
Share

I am caring for my 94 year old mother at home. She has severe dementia. She recently recovered from RSV for which she was hospitalized for a week. While in the hospital she suffered devastating hospital induced delirium and had to be in bed restraints day and night. I will not do this to her again. Her dementia has worsened since the hospitalization.


As her caregiver, if I contract corona virus there is every reason to expect she will get it as well. I am mentally preparing that this will probably end her life. Another horrifying trip to the ER for her and then hospitalization will be pointless and cruel. Love my mom and can’t do this to her again.


Have any of you given this any thought?

This question has been closed for answers. Ask a New Question.
I am my husbands care giver and yes, I've wondered how to handle it if I catch the virus. I have to be out to pickup our meds and stood in line today just to get 2 packages of toilet paper!! We were getting very low. I keep sanitizer in the car and as soon as I get in it, I swab my hands down along with the door handle and steering wheel. I come home and spray all the items coming into the house with lysol or wash them down with sanitizing wipes.

Husband is 75 and an ex trucker. His sanitary habits rate right next to a 2 year olds. He has dementia and the onset of alzheimers but, still can rationalize some things most days. He gets angry at me when he sits and picks at his ears, nose, etc then heads for the fridge without washing his hands and I stop him and send him to the sink. He sits until it is late at night then says he is sleepy and not going to bathe. He goes to bed without even rinsing his face or hands. I sleep in the living room because the bed and bedroom smell musty and like his breath.

I worry because I have part of the left lung that is dead/dying. Walking at a normal persons speed for 20' leaves me gasping for breath or hunting for an inhaler. If something happens to me, there is no one to care for him. Our kids would try to help but, they all work or go to school. While I was in the hospital the last week of 2018 and first week of 2019 having my colon removed due to cancer, he was alone and tried to close all our banking accounts. I had pre-planned for something like that and had fixed the 2 main accounts so he couldn't get into them. But, he got into our credit union account that was for emergency, vacation and medical use. Where all the money went I do not know. He said he gave it to the kids, they say he didn't. I worry what will happen if I am not here to give him his meds, help bathe him, cook, clean, pickup his meds, everything actually. He sits in a recliner from getting up in the am to going to bed at night. He gets up to fill his coffee cup or glass of juice, go to the bathroom and get snacks. He has lost his body strength and will most likely be in a wheelchair by years end. Most likely, he will end up in a nursing home. There is no POAs, wills, etc. He keeps saying we need to do that but, I can't get him to agree to go to an attorney. I have put it in Gods hands. If he needs me or my husband off of the earth, he will take us when the time comes. We do have our funerals paid for.

I wish everyone the best outcome while doing our best to care for loved ones, clients and ourselves.
Helpful Answer (1)
Report
scatter195 Mar 2020
You are a saint. I’m so sorry for your situation, you have already dealt with so much. You can only do so much,especially considering your own health issues. Take care.
(0)
Report
This is the only place in Italy where the have stopped the virus and curb it at the very beginning. How?
"“Here there were the first two cases. We tested everyone, even if the ‘experts’ told us this was a mistake: 3,000 tests. We found 66 positives, who we isolated for 14 days, and after that 6 of them were still positive. And that is how we ended it.’’"

https://www.theguardian.com/world/2020/mar/18/scientists-say-mass-tests-in-italian-town-have-halted-covid-19

This means that I'm caring for my mother thinking that there's a high possibility that I could be positive and asymptomatic.
Helpful Answer (0)
Report

Take all the necessary precautions offered up every day by the CDC. It does no one any good to panic. Panic ratchets up anxiety.
Helpful Answer (0)
Report

Yes. I have updated her DNR and no intubation orders. I have spoken to her assisted living facility and PCP about “quarantine” on site and immediately going on hospice Should she contract any significant respiratory illness, not just COVID-19. Mom has advanced COPD and dementia. It does not make sense to send her to the hospital where those with a good chance of recovery should be our highest priority.
Helpful Answer (2)
Report

This is a dry pneumonia. You may want now to face end of life decisions, such as allowing Mom to stay home, no matter the outcome. As a nurse, most I saw with dry pneumonia suffered cough, air hunger, gradual exhaustion and more shallow breathing, and a descent into sleepiness and coma. There was often not the usual WET pneumonia struggle with airway obstruction. Pneumonia was once called "the old person's friend". Mom is with you and now only knows your love and support. If you get it, she may. You know the precautions. STAY HOME. Others must bring in your things. Wipe them down if they were handled by others. Wishing you the best of luck. This is a terrifying time both in terms of illness and our economy. Wishing you both stay safe. I think we are all now facing all of this. I have two very immune compromised stepdaughter and grandson. We are all frightened for what "may be" but give yourself relief from constant thought of this. Hugs out to you, from more than 6 feet away.
Helpful Answer (3)
Report

As an RN, here is my insight.

When you contact COVID-19:
Try to be extra careful to wash surfaces and your hands frequently .Cover your mouth when giving care to your mom. Facemasks are probably too hard to get, but a bandana is better than nothing. You will probably have mild symptoms: cough, temperature... similar to a head cold to a mild case of flu (no diarrhea or vomiting) for 2 weeks. Must stay home until your are cleared by your doctor or public health of the virus. If you experience shortness of breath, contact your doctor. The worst case scenario is developing pneumonia.

When mom develops COVID-19:
She will most likely develop pneumonia: high fever, cough, shortness of breath, fatigue. Give her Tylenol for fever according to package directions. Make sure she drinks plenty of fluids. Notify health department - they may send somebody over to test for COVID-19 and assess your mom. Please keep in contact with your mom's doctor for further medical advise. You will need to be in isolation with her for 2-6 weeks until she clears the virus or passes.

Does your mom have a "do not resuscitate" order or "living will" in her medical files? You may need something along those lines to cover yourself legally for not seeking more aggressive care in a hospital.
Helpful Answer (3)
Report
scatter195 Mar 2020
Thank you.
(0)
Report
See 1 more reply
Yes, been thinking about this - mom has dementia, has signed a DNR, wouldn't want to be intubated. So, thinking that if she catches COVID, best to keep her at home. BUT what does that actually mean? Anybody have answers here? She has a 24/7 caregiver, but I can't seem to grapple with the thought of mom getting sick enough to not breathe - what do we do without going to hospital? Which, by the way, will all be stressed to the max - we are in NYS.
Helpful Answer (0)
Report
scatter195 Mar 2020
I talked with my doctor and she suggested it was probably time to place my mom on home hospice. With hospice if mom develops an illness at home that causes her to suffer I will be able to Contact hospice 24/7 to keep her comfortable, there will be no ER visit or hospitalization. This will in all probability end her life. But it will be at home where she wants to be.
(4)
Report
I think about it plenty, as a paid home caregiver for 2 special needs senior gentlemen. They are in a senior apartment complex which has gone on total lockdown except for medically necessary caregivers which would include me.
There is a great deal of memo-ing and such about keeping clients safe and well, yet not much about what caregivers should do if taken ill. Stay home, right?
Then who is the caregiver?
Helpful Answer (2)
Report
Indigo1906 Mar 2020
I have the same job as you, we're also on lockdown. We have to report if we are unwell & go home to self isolate- Which, for me, means with my elderly Mom.
I don't know what happens to my clients or my Mom if I get sick. I'm hoping that if I follow the CDC guidelines I'll be okay in a couple weeks, but would hate to expose either Mom or clients to this virus. We have co-workers & supervisors lined up to cover if any caregiver staff becomes ill.
My main job now seems to be keeping them occupied, pretending to be calm & cheerful, taking good care of myself as I can & cleaning, cleaning, cleaning!
Glad we have a job where our job [clients] love us back!
(2)
Report
I am in the same situation my mom is 92 this year, LBD she has a statement DNR,
she also has a very bad heart condition, should have a valve transplant but this would be the end of her. So it is not good.
Her mind is totally gone, she drives me insane she has no understanding of reality. She has no memory at all, last night I put her to bed as she said she wanted to sleep, 3 minutes later she is yelling help help I got to get home my mother doesn’t know where I am. This goes on 24 hours a day. We have no peace till she falls asleep. I do admit I ignore most of her yelling because when I ask her what she wants it’s always I got to go home. So no, I will not be visiting the hospital with her. I may sound heartless but the end would be a blessing.
Helpful Answer (4)
Report
scatter195 Mar 2020
I’m right there with you! This is my situation as well. I agree the end will be a blessing for her.
(2)
Report
See 1 more reply
Yes and definitely yes! I'm in a similar situation as you. Caring for my 94 year old mother who has Dementia, COPD, diabetes and bursitis. I also have COPD, emphysema and cancer now in remission 30 years as well as a back injury. Any person over 60 who has pre existing conditions is at more risk than a healthy 60 or 70 year old. I'm trying my best to thoroughly clean surfaces in my home after going into a store which everyone is forced to do eventually. If i have symptoms, the only advice given to me by my pharmacist is to contact my PC Doctor. There still is no word on testing sites or kits to be found any where in my city. The shortages in hand sanitizer, toilet paper and even thermometers had me searching on Amazon and Ebay. Even in these websites there is price gouging. A case of toilet paper costs 96.00. That's for cost of item and shipping so outrageous! Even lysol products have diminished from the shelves at my local Walmart. This is a very serious situation we are all facing. My mother has her primary nurse practitioner come here to our home for monthly checkups. All of this makes the impact of this virus much more dangerous or even fatal for the elderly and unhealthy senior citizens. I'm only doing what the WHO has been advising. Washing my hands and distancing myself 4 to 6 feet from people restricting touching facial features as well. Currently I've have a slight sinus confection and am taking 12 hour sudafed everyday. Until the government issues free coronavirus testing kits or sites, we are in the dark. Much prayers are needed for healing of those who are already infected. I think it may still get worse before it gets better. If i get infected all i can do to help my mother is isolate myself in my bedroom, wear latex gloves and a facial mask luckily i bought these items 2 months ago. Prayers to you and all other caregivers who are seniors caring for a sick elderly parent. Faith in God to expell fear is a good prayer as we go about our daily lives as beat as we can.
Helpful Answer (6)
Report
Katie22 Mar 2020
The toilet paper gouging is ridiculous. I will wash each time if I have to, or use kleenex and throw them in a wastebasket and throw the bag out, as on a boat, so that the pipes don't get clogged. I will do this before spending ridiculous amounts on TP. The gouging is awful to be doing to people at this time..
(1)
Report
Thanks for your responses. I guess we all know the lay of the land, best wishes to all of you in your unique situations.
Helpful Answer (3)
Report

I'm prepared, but I'm always prepared. Isn't that part and parcel of being a caregiver for the elderly? I fully expect to wake up one day and someone will be dead. I can only hope they go quietly in their sleep instead of dying in pain in a hospital.
Helpful Answer (6)
Report
scatter195 Mar 2020
Agreed, just wanted to provoke some thought for those who may believe its best to rush an elderly person into the ER for this type of virus.
(1)
Report
I have very similar experiences in the past and brought my mom home against all doctors' opinions; she started improving the very same day she got back home.
I'm with you 100%.
13 years later, I feel like we are living a similar nightmare with this virus.
As BarbBrooklyn says, I think you took the right decision; if I may add something, go into self-isolation asap. It's hard. But I really think the sooner the better. You'll be both fine :)
Helpful Answer (3)
Report

Ahmijoy, Unfortunately, so many people still refuse to acknowledge the threat of a pandemic, including the one we're in now.   I don't know what it will take for them to see the light.   

You have my sympathy, being "between a rock and a hard place."

Some thoughts:

How old are the children in day care?  Are they old enough to comprehend being sick, and to understand what it means?   Are they old enough to read?

What activities are planned for them?

My thoughts are to conduct your own education program; even if the children aren't able to educate their parents, you may be able to instill in them some cautions, as well as increase protection at the day care center.

You could start with what it means to be sick, to be very sick, how they feel about it, and what they do at home to protect themselves.

Then institute a program of cleanliness, starting with each child washing hands on arrival, and after touching each other or objects of potential transference.

I doubt if the parents would comply, but you (or whoever owns the day care) could institute a requirement that children bring a small bottle of hand sanitizer from home, for their own use at the facility.

Daily go through the repetition of cleanliness, safety, covering mouths when coughing or sneezing, and other preventative tactics.

If they read, and/or if they're computer literate, ask them to find articles on safety during pandemics, then have the children read their articles and discuss them as a group.  (This may be too challenging if they're younger children though.)

My thoughts are that notwithstanding parental ignorance, you might be able to train the children and at least possibly reduce some practices which could contribute to better hygiene in the day care center, and thus possibly reduce some element of risk. 

OTOH, I think that sooner or later smaller businesses are going to be shutting down, and there is that possibility.   I'm not trying to be discouraging, just cautioning you to consider that option.
Helpful Answer (3)
Report

Oh yes I have come to terms with this already. It is heartbreaking. My mother was in the hospital for ten days about one month ago. I will not take her to the ER to be exposed any further. I am taking care of her at home and doing everything in my power to keep this virus away from all of us, especially my mother. Washing hands frequently, wiping down surfaces frequently, spraying with Lysol. washing hands before and after caring for my mom. Granddaughter is second in command. I do have to go shopping and I am a little nervous about it. I was impressed with Costco's the staff was wiping down all the carts, wipes were available at the entrance and at the registers hand sanitizer was available. We are all doing our part and hoping all caregivers and family stay safe and healthy. Wishing all of you good health.
Helpful Answer (4)
Report

Scatter, this is called palliative care.

Several years ago, 2 years into my mom's NH stay due to dementia,CHF and a broken hip, my mom ended up in Septic shock in the hospital. Although she survived, it was clear at that point that every hospitalization set her back several steps. We started practicing "less is more" care and signed off on the NH not sending her to the ER any longer without consulting us.

They successfully treated two more bouts of pneumonia and a UTI "in house" before she died.

I think you are doing the right thing.
Helpful Answer (3)
Report

I am in a truly tenuous situation. I care for my husband who is bedridden and who has always seemed very susceptible to infections. I also work in a daycare. The parents who bring in their children seem to have little concern for the staff at the daycare. They bring in their children when they’re sick just so they don’t have to miss a day of work. Last Christmas, I brought home a virus that I’m seriously wondering about—it may have been Coronavirus. My husband caught it and almost died.

So what do I do? Quit a job I need to make ends meet? Insist that my director at the daycare clamp down on these parents? Right now we send a child home only if they have a fever. Parents dose them with Tylenol to drop the fever. I’m scared I will pass something to my husband again. And,this time he would not recover.
Helpful Answer (2)
Report
scatter195 Mar 2020
I’m so sorry you have been placed in this impossible position. Let’s hope the daycare will begin to take appropriate precautions. But as you say parents get the temp lowered through meds and send them right back.
(0)
Report
See 1 more reply
Thank you for this thread. We will be doing the same as FloridaDD is doing. Our 93 YO father has CHF. Caregivers, hospice nurse and bath aide, my sister and me. We will be out of Purell soon. We will not subject our father to a visit to the ER at this time. We will adhere to his wishes regarding extraordinary measures.
Helpful Answer (5)
Report

Yes, I care for 100 YO mom at home.  She is already on oxygen.   I limit my contact with others.  I work at home (on computer).  I have cut out optional trips out (no manicures for me).   I order food in, they leave it on the porch.   I keep Purcell at the front door -- but the only ones who come over are the caregiver and my DD, who know to wash hands when they walk in the door.
Helpful Answer (6)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter