[From Patreon, written July 6, 2018]
Most often when I sit down to write things about life helping Mom, unless I’m venting some stress for that day, I’m writing up and accentuating the positives. But I want to tell a cautionary tale to other caregivers and, hopefully, the larger society for those who would help the elders in their lives stay at home.
By March and April of this year I was teetering well within burnout range. I’m not sure I ever really leave burn out range any more, in fact. I do, however, get overly concerned for myself by noticing things like constant wandering into rooms without remembering why I was there; Feelings of a need for sobbing without a particular trigger; Difficulty sleeping or sitting still even while on a break in a park alone; Strange aches and pains, or a sudden lack of both appetite and the ability to “eat anyway.” These are some signs that I’m in a dangerous spot from burnout, and when I need to at least work towards getting a respite in order.
This time around it had been a difficult go for the first part of the Spring, and I needed to simply do what I have done the last few years: Call and talk to the local case manager for when I can book some days in May (and July & September) to get out of town, sit by a river or creek or lake, and recharge. I made the call & was told there were various new hoops I needed to jump through, and that the old case manager was gone, and it might not be possible. Feeling like I was being threatened, I got animated on the call but right quick, and basically demanded this be figured out (as not giving me a short break could break the home as a very real possibility).
So, this new case manager did some great hurdle jumping for me/us, and I was starting to relax and plan where to go. Then, the phone rang. I was told that the place Mom had been booked to stay in was refusing her as a temporary resident– due to recently reported “behavioral issues.” That requires yet another separate story.
Since Mom moved home here, back in late 2014, shortly after we have had nurses who come in, help mom in the shower, getting dressed and/or to give me a shopping respite for 3-4 hours. For practical and financial reasons, we now have those visits down to 2 a week. Many different nurses have been sent by a local contracted service provider hired by Fraser Health. Not long after we started having these nurses attend to mom, a nurse named Pauline started to come over regularly. Mom found her delightful; Always bubbly and able to laugh, Mom would not only get good assistance she had a friend. This is really key– it’s not as if the other women who come in are “bad” to mom (though I’ve had issues here and there with the odd person), just simply that only one of them became friends with mom.
On a morning where I got her up before the nurses’ arrival, Mom would ask “who is it coming today?” and when I told her I believed it to be Pauline that day “Oh, good! That one’s my favourite!” would come the reply. They would have a good time, Mom was very easy when it came to being asked to take pills, do exercises or what have you. She actively looked forward to it. Then in February, Pauline informed us that the following month she was being transferred to another section of Burnaby. She wasn’t happy to be leaving, Mom was clearly not, and I called the manager to complain– who then told me it was not in their hands, anyways. It was about a retooling of ‘efficiency’ and the ‘clients’ were not to be consulted nor considered.
Well, Mom was a little confused; In the Spring we have been indoors mostly for several months and having an ongoing, out of the home life was on hold for the coming sun. It gets to Mom, and after awhile she starts to shut down from boredom and her brain makes up more interesting things. Then Pauline was gone and a new woman (name not important) began to come on Tuesdays. The first time she was here she decided to “make herself busy” (her words) because she didn’t want to be idle the whole time she was here with Mom and I was out. She immediately spotted some things that she wante to help with (and how could I possibly complain about that?) such as doing an extra cleaning of Mom’s bathtub. Problem: The bathtub is at the other end of the apartment. Mom was in the dining room/living room area, and she was alone. Having flipped through the newspaper, she got bored. So she started to get ready to “go out.” The first thing she did was go and retrieve her shoes– something Pauline learned long before to prevent through hiding the shoes. Mom doesn’t explain why, she just “looks for her shoes” and if left to it, will get them on, grab her coat, and try to go out.
This is a very minor thing, no matter how complicated it sounds. The trick is to prevent it from getting to the coat, shoes and doorway point. If it gets there, you are in for one heck of a mind-warping argument. Except for a friend who had hung out with Mom while I went out a few months before this, there were no prior moments where this escalated to a conflict. But while this new woman left Mom and her mind to drift in the other end of the apartment, Donna had become fully ready to go. Mom opened the door and this other nurse was suddenly in a situation from Hell for her.
More than halfway down the Hallway from the apartment, she was almost into the lobby/elevator area and was “blocked” by the nurse, who had zero luck in getting mom to head back. I was out on my bike shopping. Another neighbour from building showed up and mom was adamant and did not move. She was going out and these people had no business whatsoever in stopping her. Right? Well, at some point the nurse tried to get Mom by the arm and lead her back, Mom forcibly rebuked this. The nurse was scared, Mom was singularly focused on the person in her way being the problem.
I, luck would have it, came home early and used the same hallway to come home as they were having a stand off in. I got Mom by the hand and we came home, with me utterly flabbergasted about what had happened. It was a little predictable– but only by maybe 3 people, and 1 of them was the nurse Pauline who was not there, and was thus not predicting and defusing anything.
This was quite a bit disconcerting, but I gave a list of songs Mom likes to play on the piano before leaving the next Tuesday, hid the shoes, talked about various things the two might do, and got her music on to occupy her ears with familiarity (and less need to ‘escape confusion’). When I got home the same two people– the nurse who had the ‘conflict’ the previous week and Mom– were sitting at the piano, Mom was beaming and happy and things were back to our version of normal.
Then the phone rang. It was the case manager who had previously done a solid to the home by getting through the ‘new rules’ to arrange the respite I was going on in less than 2 weeks. She told me it was cancelled. This, because the nurse had reported the incident in the hall, writing up Mom for ‘aggression’ and essentially ‘booking’ her without discussion with us. She went from routine booking for a respite to a ‘bad apple’ that would ‘pose a danger to staff.’
I was given one last possible respite to get my respite. This involved yet more meetings with case managers, and also to get mom prescribed anti-anxiety meds. This caused me a panic, because these things (different ones over the years) had been pumped into Mom, but thanks to her brother I knew never to leave that unattended because medications are often more for the caregiving staff than for the actual patient– Mom had been doped up on Oxycontin some years back, leaving her almost catatonic and me fighting mad (I managed to get that undone immediately back then).
I ultimately was forced to accept her getting a prescription for fast acting anti-anxiety meds, and only “in case of need,” and not as an ongoing addition to her medications. This ate up some of the only hours I have to do “my thing” during the week, but it was all done, and after review, I was able to get Mom into the respite. The assisted living facility that took mom– like all the other places that offer subsidized respites via Home Health, are also full-time live in facilities for the majority of the residents. Essentially, this bizarre situation created a dynamic where if I could not get these homes to care for mom on a temporary, few day basis, they may be forced by making our lives at home impossible– to take my mother on as a full-time resident.
You see, even while navigating all of these systems, programs, set up respites and in home assistance, all of it– it seems like you are using programs designed to help your elder and you make it work for you to have the loved one at home. But it takes so very little– like breath to the flame of an already curled-up match– to make the entire home precarious. Mom lost one nurse, one nurse who had made a huge difference in her week, who was her friend and who knew her well enough as she actually is now, to respond with, laugh with, even play with. This– combined with the well-meaning but totally wrong approach of her replacement, and a domino got loose that almost brought down the very walls and functionality of our home.
These programs are not conceived of as ways to permanently keep elders at home where they want to be. They are seen as measures to be taken for a short duration, and even if the words are not said, the programs are there just to wait until you “stop having denial” and “accept reality.” But here’s the thing: Mom needs help with every meal, almost every nap, every change of clothes and so on. There’s no denying that, not after nearly four years. What we “deny” is the inevitability of losing her home. And to know that the lack of senior-directed concern for something as “little” as who determines when a particular nurse is to be reassigned, and to heck with the patients and clients in the process? That’s because every single level of these “support” systems are designed to be as temporary as the society conceives it: “You will give up. It’s proper to place your elders with strangers in unfamiliar surroundings. It’s just ‘what we do’ and staying home is ultimately not practical.”
Meanwhile, none of this is even economical. It costs far, far more to have elders in permanent care facilities than to properly subsidize staying at home would be. But that isn’t even done. Nurses are moved at will, your elders have their vast-yet-shallow foundations shaken and suddenly absolutely everything is up in the air. We are not supposed to forget: Assisted Living is now “normal” and “inevitable.” Resist at your own peril, and at your own cost.