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cgblues Asked June 2020

Anyone struggling being a full time caregiver during the pandemic?

As if being a FT caregiver isn't hard enough, I am barely able to keep things together with the pandemic. Things have started to open up and the number of infected people are going up (duh) and I cannot believe all these people who refuse to wear a mask!!!!! Can they, for one second, think of anyone but themselves?


My mom has vascular dementia and seems to decline more and more each week, magnified by the ongoing pandemic. Physically, she is able to move about but her mental state is pretty bad. Her confusion, paranoia, delusions/hallucinations are fairly constant. I've caught her several times talking to the TV having full blown conversations with the TV personalities. I can't leave her alone but at the same time, I don't want to take her on our essential errand runs for risk of exposure, especially with non mask wearing, non socially distancing people around. If she gets Covid I feel like that is 100% on me. So we remain cooped up most of the time, go for drives and doctor's visits and that is about it. We have been struggling trying to get a caregiver because we don't just want to bring in someone who is running around every day/week taking care of multiple families. No success thus far. So it's just me and my husband. It has become his busiest time with work so he hasn't been able to be at home to give me a chance to take care of necessary things. Don't ever take a simple thing like a walk for granted!!!


We have friends whose mom goes (used to before the pandemic) to the senior center with my mom. They have offered to have mom go to their house or their mom come to ours but frankly, I don't trust their behavior. They have been dining out all the time, going to church, traveling within state and almost living their pre-pandemic lives! They also have their two 20-something kids living at home and they are out and about as well. At least they leave their mom at home to minimize her exposure but if they are always running around and come home to her anyway, what real difference does that make?


I am forcing myself to exercise at home and trying my best to lower my stress levels (ha!!!) but this 24-hr non stop responsibility is truly taking it's toll on me. I am exhausted, constantly irritable and literally don't know what else I can do. On top of that, I have been my father's replacement since he passed several years ago so mom has anxiety when I am not home. She constantly asks my husband "when is she coming home?" or "she has been gone so long" and has no true concept of how long I have actually been gone. This makes it stressful for me when I am out and I find myself trying to rush to death to get back home.


On the plus side, her new medication dosages seem to keep her more calm in general so I am grateful for that. Ironically, she just came out of her room and called up to me fully dressed asking when we are leaving? Leaving? Leaving for her doctor's appt. She has no appt today. She said it's written on the board (we have a dry erase board in the kitchen with everyone's daily schedule on it) but her day today is completely blank. "Then why didn't you tell me?" How would I assume she would come out thinking she had an appointment? How is anyone supposed to keep up with this? BIG FAT FROWNY FACE. And so it continues...


 

Ahmijoy Jun 2020
I am also a full-time caregiver and I work in a daycare part time as well. I struggled with going back to work when the daycare reopened because my husband is medically fragile. However, my daycare is very proactive about checking the children’s temps and disinfecting the facility. As soon as one of the. Hildren shows any signs of illness they are sent home.

I have not put my life on hold because of the pandemic. Because of my husband’s disability, our social life was non-existent previous to the outbreak, so staying home isn’t an inconvenience. I wear a mask when I go into a store and wash my hands so frequently my fingernails are dry and peeling even with lotion. We have nurses who come out to the house who wear masks and disinfect everything.

I do not let paranoia rule my life. If I need groceries, I go get them. Doctor’s visits are virtual. When I come home from work, I change clothes and sometimes shower. My biggest aggravation is that Hubby insists on watching sappy Hallmark movies all day and night. 🙄. You need to get someone on board to help you out before you crash. By now, you know the precautions you need to take and what you need to watch out for when you get a health aide on board. Take care of yourself as well as Mom. You’re very worth it!
Daughterof1930 Jun 2020
Hallmark movies are enough to put anyone over the edge! 😜
kbuser Jun 2020
You're not alone, I'm struggling as well. I have been home 24/7 with my mom, having literally everything delivered because I can't get out to the store. I finally brought back a caregiver for a couple hours once a week, but she does go to multiple clients. She wears a mask, but it's scary because she's in such close proximity to mom. I went to Home Depot yesterday when the caregiver was here, and literally nobody was wearing a mask. Not even the cashier that checked me out. (I was wearing one, of course). As far as your mom getting upset when you're gone, my mom was the same way. She would keep asking when I'd be home and why I'm gone so long. The doctor told me it was part of her dementia, she doesn't have a true concept of time anymore.
cgblues Jun 2020
Hi kbuser,

It sounds like we share the same struggle. I keep going back and forth about the caregiver issue. Would it be better to get some help even though it increases the risk? I just don't have the right answer and maybe there really isn't one during a pandemic. I feel a lot of guilt because I know mom's fragile but at the same time, handling this 24/7 is beyond overwhelming. I don't have the energy nor do I feel equipped mentally to try and "work" with her like a professional could...I feel like my role is making sure she's safe, eating well and taking all her medications. Isn't caregiving more than that? Maybe not with dementia. I was the FT caregiver for my dad after he was diagnosed with cancer and that experience was a world apart from this one.

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