Community and Care Taking
We need to do right by the elderly
I’ve been doing a lot of thinking on this topic for a long while. It’s a long one, so settle in, or come back and read when you have more time.
I have been reading Anne Helen Peterson’s Culture Study here on substack. I love it. She writes on so many interesting and important topics. A while ago she had a post about the care of children and elderly (or lack thereof) and the fact that this has women dropping out of the workforce in record numbers. Either because they can’t find childcare to work, or they have to care for elderly parents. She also talks about having a community. A village.
These are so hard to find these days. I know I don’t have one, and my situation in life makes it really hard to try to find one, and/or keep one. I’m a single parent of four children. All four have a range of diagnoses. When they are with their dad, I’m busy trying to do things I can’t do when they are here (sometimes the simplest of things like cleaning, washing dishes, doing laundry). I also spend a lot of time dealing with therapies (two of the children have two different therapies going on, and I have my own therapy) and school issues. I am generally running behind on work deadlines, so I also work on catching up when they aren’t here. This week, I’m still catching up on my Sunday deadline on Wednesday! I don’t have the time or space for a real social life that would be required to be a part of a community or village.
They are a handful, to say the least, and I have zero support. I also found out this week that I really need to up my parenting game with my 14-year-old, who has a non-verbal learning disability. It means so much more than what I had originally thought. She was diagnosed way back in 2015, but when they explained it to me at the evaluation they said basically she understands verbal but has disabilities in understanding math. I already knew that, so didn’t bother looking anything up. It turns out, that any mathematical type of concept is lost on her - including spacial, physical, etc… so first, second, above, below, next to… are all beyond her ability to understand. Also categories. She has no concept of categories. At age 14, she has a hard time grasping the concept of anything that requires two steps or more. So. Much. Work. Ahead. Of. Us. We are going to be taking some long grocery trips to work on categories and figuring out signs and how to find things we need. Making lists on how to do things (the steps to do laundry, the steps to everything she will need to do in life…) labels for cupboards (she can’t remember where things are kept).
Anyway, the post from Peterson about child and elderly care came about around the time a good friend from my high school days, who currently lives in NC, was coming back to town because her mom had a heart attack, her dad previously had a stroke in December (which was the last time she was in town), and she was coming for a couple of weeks to spend time with them and give her aunts a break from the caretaking they had been doing for her parents. She has two aunts that live in town, and thankfully, they have been willing to take on most of the caretaking needs.
Not every elderly couple has this available to them.
Or if they do, it’s family members that are unable or unwilling to give them adequate care. Today I saw a friend post about two sisters that were arrested for elder abuse of their mother. They left their mother on the floor for four days. It is absolutely horrific that a person could leave their 86-year-old mother on the floor for four days without food, water, and a depends change. Unhuman. I would never condone such inhumanity, but I wonder if they had help, would this situation have gotten to this point?
A little over two years ago, I witnessed my neighbors across the street end up being hospitalized and put into care facilities. They did not have any children. The woman had one sibling left that lived in Minnesota. He came to close out stuff and gut the house. He is still working on paperwork to sell the house as far as I know. The empty house is a constant reminder for me to be thankful that I have four children for when I get older. I have already told my youngest that he will be in charge of wiping my ass and changing my diapers since I wiped his ass until he was 8 freaking years old!!!
One day, the lady across the street called to me from her sidewalk. She had fallen and couldn’t get up. She was attempting to carry groceries in. Her husband came out and was in his wheelchair trying to help her, but he couldn’t help her, and then he needed help getting back into the house and up the stairs to the living room. I was very grateful that my ex’s fiancee was here picking up one of my kids for something, as she is a nurse who goes to the houses of the elderly to do physical therapy. I would not have been able to help them on my own. I just don’t have that kind of strength, and it seriously took both of us to help both of them.
Later that year, around Thanksgiving, my neighbor took them some food at Thanksgiving. She told me that neither one of them even knew it was Thanksgiving! Shortly after that is when the man was taken by ambulance to the hospital. It quickly became apparent that the woman had dementia. My neighbor was helping her out and taking her to the store when she went. The lady had no clue about Covid and masks (and this was the height of Covid). She kept saying that she was going to make something special for her husband for dinner as if he was still there in the house, but he was in the hospital. She had also told the neighbor that he was home when he clearly wasn’t. It was that neighbor that had found a number for the woman’s brother and called him, and then eventually called DHS to report that she needed assistance. It was such a sad situation, and the neighbor kept me updated on it because I was also concerned for their wellbeing and had offered help several times. I so hated to see anyone in this situation. Her dementia had gotten so bad that the neighbor really couldn’t help. It turned out the lady had about several dozen expired eggs in her refrigerator along with a LOT of spoiled food. We both wondered what she had been eating.
Also, at the height of Covid, a very dear friend of my mother’s passed. She was another elderly lady who had no children, and no one physically checking in on her. My mother and she talked every day. She would tell my mother, in great detail, about the meals she was making for this or that reason. She was also having health issues with cancer and other things that she really downplayed and made everyone think she was fine. My mother had no idea that in reality, her water had been shut off for months. The woman had money, but likely because of dementia or whatever other reason, she didn't pay the bill and didn’t try to remedy the situation. She was a very private and independent person, and would never have asked for help or let anyone know that she needed help. She actually got angry with my mother and refused to talk to her for several days after my mom texted that she was going to call in a welfare check after she didn’t answer her phone for a couple of days.
Towards the end, a neighbor called in a welfare check that took her by ambulance to the hospital where she passed a day later. It was a very sad situation. Had it not been for the early stages of Covid, and the lack of relatives, things may have played out differently. But the fact that she didn’t have children and didn’t have any close relatives that lived in town, and didn’t have anyone that knew she was having issues was likely what caused her to perish under such awful circumstances. It’s been a really hard thing for my mom to process.
As far as childcare goes - I’ve rarely had it. We were able to pay for daycare for the months we lived in North Dakota as my ex and I were both working full-time jobs. One child was in first grade and the other three were in daycare. The prices were reasonable there. Once we moved to Iowa, things were a bit different. When I got a full-time temp job and ended up kicking my ex out, I was able to apply for childcare assistance. Thank God because the childcare expense per week was exactly what I made per week! How are people supposed to do this without financial assistance? This puts lower wage earners at a complete disadvantage and makes for some impossible choices.
When we got back together, we both had to work at least 28 hours per week to be able to get childcare assistance. It was a LOT of work to remain on childcare assistance. We had to submit timesheets, daycare sheets, and all sorts of paperwork monthly. I can’t tell you how many times I ended up getting called from the daycare to come pick up the kids because they hadn’t gotten the monthly approval yet. Once a coworker could hear the other end of my phone conversation and just laughed.
We got kicked off because at one point neither of us had worked 28-hour weeks - me because I had to take days off for sick kids and IEP meetings along with other school issues, and him because he basically didn’t want to work that many hours. Even though he wouldn’t take time off for sick kids… It ended up working out OK because I got fired over having to take time off for an IEP meeting that I had already told my employer about, but it was essentially the last straw for them. Since then, I have worked part-time teaching classes online, which is about all I can handle with the children. Hahaha, I seriously was thinking that this year I could possibly work a job outside of the home because things seemed to be going good this school year, but just as I was thinking about it, my youngest started having behavioral issues at school again… so I’m back to getting calls and having meetings, etc…
I do have family here in Iowa, but, my mom is at a point where she really can’t help as she has some medical conditions. My siblings that are here all have their own families and work full time outside of the house. Not everyone has family available to help! One of my sisters has been able to help me out tremendously when she’s been laid off during the winters (she’s a construction worker). And that has been a huge godsend!! She is also great at coming over to do small things that I can’t do when she has time.
That sister also does a lot of care for our mother. My mother bought a duplex and my sister lives on one side and my mother on the other side. My sister is able to run errands and help my mom with meals and whatever she needs. It’s a fortunate situation. I do help my mom with errands and such when it’s a week that I don’t have my children. I also help out a friend who has medical issues and is pretty much homebound during those weeks.
Throughout the past few weeks, I have also been helping my friend from NC with her parents. I have gone and sat with them several times to give her aunt a break. Her aunt’s granddaughter is getting married this weekend, so her aunt has needed some time to do some things related to the wedding. (It’s a worthwhile note to say that this aunt also watches her granddaughter a lot.)
I cannot tell you how much I have enjoyed this time. I never met or knew my friend’s parents back in high school, but now I absolutely regret that! I am enjoying them so much. They both have such excellent stories to tell me when I’m there! I would rather listen to their stories than anything else!
They both need 24-hour care, or at least someone there with them. They are both a fall risk, and her mother is on oxygen, and they both still smoke. Sometimes they forget about the oxygen and try to light up a cigarette when it’s on. They need someone to help prepare their meals, make sure there is enough water in the oxygen machine, sort and dispense medications, do the laundry, dishes, etc…
The average cost of in-home care in this area is $25 an hour. That’s $600 per day. How many people can afford that? This family has found an agency that charges $18 per hour, so they use people from that agency mostly for overnight care. The one aunt has a full-time job, so helps out when she can. The other aunt has been the primary caregiver.
My friend went back to NC essentially to submit FMLA (max is 12 weeks) for her job, pack everything up, put her stuff in storage, and come back to stay with her parents for an undefined amount of time. If her stay is longer than 12 weeks, she will likely have to get a job here. She’s fortunate in that she has a savings, and is going through a divorce and her soon to be ex bought her out of the house, so she will have that as well - but her plan had been to purchase her own house back in NC as soon as she received the buyout, and she will still want to do that.
The income/class disparity in the care of our children, but primarily our elders is horrible. People talk a lot about the lack of childcare, but the lack of elder care is all but ignored. People don’t want to talk about that. People want to pretend that they will never be faced with that situation. It’s like society’s ugly secret.
I left out the story of us taking our grandmother in when she was at a point where she’d had strokes and surgeries and needed 24-hour care. I couldn’t figure out where to place it, but I guess the end is as good as any.
She had been in an assisted living facility when she was still able to mostly care for herself. Then the medical issues. Putting her into a home was a route that wasn’t financially feasible for my mother. She has a brother, but all of the caretaking responsibility was up to my mother and he didn’t really want anything to do with it.
We moved her into our townhouse. My mom worked 3 jobs to support our family. My oldest younger brother and I were graduated from high school and working full time jobs outside of the home and contributing, but also taking the younger ones to school, practices, friends’ houses, etc…
Moving grandma in added a lot of stress to an already stressful situation. She needed help with everything. We all took turns taking her to the bathroom, bathing her, changing her clothes, rubbing her feet (that one I excused myself from because I HATE feet, unless it’s baby feet)…
I ended up moving to Chicago with a boyfriend. Right around that time is when my mom finally asked her brother for help. His help was financial assistance to put grandma into a nursing home. She was there for a month or two before she passed. This was quite upsetting for our family, especially my mom - if she would have known grandma only had a couple more months, she wouldn’t have made the choice to send her to a nursing home.
So, yeah. Ending on that sad note. But, we seriously need to find ways to make options for our elders. The conversation about it needs to open up and be as visible as our concerns over childcare. With so much talk about childcare, I knew daycare assistance existed. I didn’t know anything specific about it until I needed to, but it was easy to find information. Just briefly doing some casual Google searches, I really didn’t come up with anything that seemed doable. Most of it was concerning nursing homes and other living facilities. Not everyone wants that. There is a huge stigma with that. The experience my grandmother had in the nursing home was not a good one. There are not enough workers, and not enough individual care taking. I’m assuming there are better places, but also assuming that the better the nursing home, the more the cost, which again leaves low income people with substandard care.
Things just need to change.