a real day in the life of dementia care

When I started this blog in 2015, one of the first posts I ever wrote was this: A Typical Day in the Nest  and I had no idea how very different my life would be in just a few years, or how difficult it would be to share with people in my life how terrible things are here at home now, in 2021. Standing on the spot trying to tell people, in person, how incredibly relentless and draining it is to care for Dad at home is just not working - they don't really get it, or they don't want to. It is all just met with "oh it must be so hard for him". 

I feel I have no choice but to do this. This is the current "typical" day in the nest. I'm documenting a full day of living in this house so that you can understand when I'm angry, upset, or stressed, and why the number one goal in my life is to get my Dad into full time dementia care. And you need to know what it is like to do this 24 hours a day yourself so that you don't end up trying to do this 24 hours a day yourself. Because you absolutely should not do this. No one should live like this:

04.00am I am woken up suddenly, by loud shouting. Mum gets up everyday to take her thyroid medication so that she can have cereal with milk when she gets up later for breakfast. Dad has turned the light off leaving her stranded in the house in the dark, nowhere near a light switch. My heart is pounding and I'm stressed already. 

04.30am There is a lot of sounds of doors and drawers slamming. Dad wants to get up for the day and Mum is trying to tell him to go back to bed. This is necessary because Mum needs more rest, and Dad cannot get up unsupervised anymore. Without someone getting up first and lighting the fire, he will try and do that himself and that's just too dangerous (we actually have to hide the matches) he can also decide to feed chocolate to the dog (more on that later) and make a complete mess of the house (imagine the police ransacked your house while executing a warrant and you'll be in the vicinity of the tornado that is my father)

06.30am I have not been able to get more sleep and its time to get up and walk my dog. 

07.30am I feed the dog, and get my breakfast Dad is not dressed yet and I can hear him arguing with Mum because he wants her to fasten his shirt buttons at the wrist, which is impossible because his shirts are for tiny men (he is a tiny man) but on each wrist he (and we do not understand why) has taken to wearing two sweatbands on top of each other, and a watch fastened around that.... so he would need a shirt made for a much larger man if he wants the buttons fastened. We actually argue about this 2-3 times a day. Trying to dress dad is like trying to wrestle a piranha into tuxedo. If a piranha had Tourettes.

07.45am I enter the only bathroom in this house, to brush my teeth and wash my face. I am lucky if I get ten minutes in the bathroom in the entire day - and the ten minutes is rarely when I need them. Dad can see me in the bathroom but decides to push his way in, one shuffling step at a time, with his walker, and basically tries to force me to move away from the sink even though I'm in the middle of my self care. I stand my ground because if I move from the sink he will start to comb his hair, which involves him standing at the sink for five minutes with the tap running the whole time and I'm in the middle of cleaning my teeth. Dad starts to use my facial cleanser as aftershave right in front of me, even though he hasn't had a shave and I tell him its mine, he tells me straight to my face "no its not" and keeps rifling through my things using them all. There goes my tiny bottles of Sukin. This is a big issue for me because Dad's misuse of products is a huge drain on finances. He can use a tube of Savlon in a week. I have no idea what he does with toothpaste. He wants to eat 20 Strepsils a day and will have a melt down if you say no have a lolly instead. I reckon he'd shove a tampon up his ass if he thought it would help his haemorrhoids.

07.56am Code Brown. Dad has come out into the hallway looking for Mum because she didn't hear him call her the first time. First thing Mum says is "come into the bathroom" (which is right there) and he snarls "no, go away, I'll do it myself!" because his brain has interpreted Mum asking him to come into the one room actually equipped to help in this situation as an insult and is raging about it.

08.45am Dad is about to go for his morning walk, Mum checks what he has in his pockets and in the basket of his walker to prevent him taking anything he doesn't need as he tends to lose everything. He had his wallet, which Mum asks him to put back in his bedside drawer. A battle ensues because Dad is absolutely adamant he will take his wallet and Mum repeatedly reminds him that there is nowhere to spend any money and he doesn't need to take his wallet. I can hear him repeatedly screaming at her "give me my fucken cash!" Which is what you should imagine every time I tell you there is an argument in the house. On top of this, Mum is trying to get Dad to put his coins in the zippered coin compartment of his wallet instead of loose where it falls out everywhere and this too is earning her considerable resistance. He has lost the ten dollar note Mum left in his wallet when she cleaned it out of things he should not lose (like his credit card, pension card, and everything important or identifying)

During the time that Dad goes for his walk, we have some peace and quiet, though no one actually ever has enough time to unwind from the chronic hostility in which we live.

10.30am Dad has lost the fabric cover he stores his sunglasses in. Its not valuable in the grand scheme of things but he obsesses over it the way he does anything that he loses. During the search we discover he has also lost a pair of eyeglasses and that is more concerning. Dad is demanding we look in the car. He hasn't been in the car since last Thursday when he was taken to dementia day care. The glasses have only been missing since breakfast so Mum doesn't want to waste time looking where they can't be. Dad is not capable of having this explained to him. Lots of shouting and dummy spits about this. 

11.25am Dad has found the fabric sunglasses cover and throws it into the face of my Mum who is sitting having a cup of coffee at the dining table. I told him not to throw it at her, she didn't lose it, and asked him if he intends to use it or not. He puts his sunglasses in it. I try to have a word to Dad about how, considering how stressed he gets when he can't find something, he should appreciate Mum more when she tries to remind him how to prevent losing things instead of abusing her. He tells me to fucking shut up.

11.58am Mum found Dad's missing eyeglasses in their wardrobe. He tells her she lost them and snarls "give them to me" 

12.00 Lunch time. Dad wants takeaway. That's not going to happen. During a sour, terse lunch time Dad repeatedly harasses Mum for information as to "what time are we leaving?" even though no one is going anywhere today. He insists that they are going out. After every time Mum explains that we are staying home and doing housework today he asks again "when are you going to be ready to go?" He also insists Mum take him to our old house, that they sold over 30 years ago because he thinks he still owns it, or that Mum sold it out from under him and he has to go and speak to the people who live there to "ask them some questions" Terrific!

13.30ish Mum is making some loud noises around the fireplace as she moves things to sweep and I am vacuuming. Dad snarls "what the bloody hell are you doing now?" because he appears to be angry that we are mucking around instead of taking him out. This evolves into Dad thinking he should be attending his dementia day care today (he doesn't call it that, as he doesn't really know that he has dementia) he just calls it Ella's House or "the place I go to.... with the other people" We explain that the group only runs on Thursday and today is not Thursday. He screams at Mum that she has to take him there so he can put in his apologies (for not being there) and we try to calmly explain that he has nothing to apologise for and that no one is expecting him there today. Dad screams "that's what you reckon" and a few other things about us being bullshit.

14.05pm Mum has entered her bedroom to find paperwork scattered all over the bed. Dad has been searching for proof that he stills owns the old house. Which is impossible to find since it does not exist. This is upsetting for Mum because she has to take it all off the bed and try to put it into order and pray nothing has been lost or thrown out by Dad. 

This seems like the point in which I need to tell you that it simply is not possible for us to hide everything we can't let Dad use or lose, there is nowhere left to hide anything. I have his car key in my box of medications in my bedroom. He lost his house keys. Mum and I hide our house keys. We hide the matches. We hide the paperwork from My Aged Care and the applications for nursing homes. We hide Dad's hearing aid batteries because if he knew where they are he would change the batteries five times in one afternoon. But that's it we simply cannot hide everything. 

15.00pm Afternoon tea time, Dad likes biscuits or chocolate. Unfortunately he has to be watched like a hawk as he does get caught feeding the dog. He is caught trying to slip chocolate to the dog, when Mum asks him "are you trying to kill the dog?" he snarls "I will kill the dog if you don't sit down" (since she is sitting I think he means shut the fuck up, which is his typical response)

I take the dog for a walk at this point.

16.15pm Dad has had a shower and now he wants his shirt wrist button fastened for him. I try but let him know that I can't do it and that I will only do it if he removes his sweat bands. Mum comes over because she says she can do it. I stand back and wait for her to realise that she can't do it because this time he has 3 sweat bands on one wrist, plus the watch. I have no idea where this madness came from, in my entire life he never even owned a sweatband but now he is totally obsessed with them. During this effort Mum realises Dad can't hear, and we think Dad has worn his hearing aids in the shower again, so he won't be able to communicate with us until they are fully dry (that might be tomorrow morning) Dad insists that he needs new batteries in the hearing aids but that won't do a damn thing for a wet hearing aid. Lots of screaming is going on right now.

Another code brown, right when Mum is busy cooking dinner and I can't help Dad with this matter. I think the sad thing is that Dad calls Mum because he needs her, and she comes because she wants to help him, but the whole time he fights her and is hostile. Mum used to have a partner but now she just has the world's nastiest toddler. That must be terribly lonely for her. 

17.30pm While Mum and I are busy cleaning the kitchen and washing dishes Dad has gone to change into his pjs. Unfortunately Mum will discover that he has changed out of his adult diaper and put his underwear inside the new diaper instead of on the outside of it. There are also clean clothes everywhere that Mum has to put back where they came from before she can even sit on the bed or get changed herself. 

Dad sits in the front lounge room to read, and then asks Mum why she isn't sitting next to him. She is sitting in the family room where my parents have sat side by side for over 30 years, he has taken to sitting somewhere else and then wonders why he is alone. As an interesting side note, Dad is reading a massive book by Ken Follett, for the third consecutive time. He doesn't know. This might be the most cost effective part of caring for Dad.

18.00 We are entering the sundowning stage of the day now, where once we all began to unwind and relax for a few hours prior to going to bed this is now the worst time of day because the screaming and stress that goes on now makes it harder and harder to be physically and mentally relaxed enough to sleep even though we are exhausted from pretty much non stop fighting all day.

I spend my evenings in my own room, watching Netflix, or reading, and typically just when I think, all is quiet, it erupts into complete madness. I'll hear screaming, banging, often I'll hear the front door being unlocked and Mum going out to the garage all because Dad has realised he has lost something and has to have it right that moment. It is never anything he has to have right at that moment. It is not something that anyone needs in order to have a good night's sleep, it's nothing that will be needed first thing in the morning. It is nothing that is worth upsetting and reversing what little relaxation we had managed to begin to achieve but it is fireworks and anger until the whole premises has been tipped upside down for in a futile effort to find a trivial thing and everyone is pissed off with each other and I sit in my room comforting my dog who is also stressed by the yelling, and I begin to understand why elderly couples commit murder suicide. I don't think that will happen here, but I begin to see how it happens.

20.15pm I can hear screaming about toothpicks. We have this argument a lot. It goes nuclear every time. Dad wants toothpicks for his teeth. We had to ban toothpicks in this house because he drops them all the time without even knowing it and the dog got 6 in one month. Fortunately not in his intestines. But I would find them chewed up on the dog bed, or on the floor of my bedroom, or in my office and there is only one person who uses toothpicks. They have all come from Dad. When we first stopped buying toothpicks Dad went through a terrible stage of sneaking out to the garage to use sandpaper on his teeth (including his expensive false teeth) so that every time he said he wanted to go out to the garage we had to ask him why, and he got very angry because he knew we were trying to prevent him from sandpapering his teeth. Aren't we horrible? Mum tried to supervise him using a toothpick, but he kept on hiding the used one in his glasses case instead of giving it back to her to dispose of. Then it turns out Mum can't even buy the type of toothpicks he likes now and we have tried to explain that for environmental reasons a lot of products just aren't profitable for companies anymore and that's why we can't find them and buy them for him. He does not believe this, and keeps on insisting he walk to the shops to buy some (he is not capable of walking that far and we'd never let him) but Mum did take him with her to the shop one day and asked for the toothpicks and he was standing right there when they told him they don't sell them anymore. Same with most shops. Dad now is fixated on whittling a match into a toothpick and is very angry about the fact that he cannot find the matches, which of course are hidden for safety reasons. But this is a fight nearly every day.

I wait it out in my room. Until eventually I think, now I can pop my night medication and begin the final stages of getting ready for bed. I've waited an hour for my Dad to finish in the bathroom so I can brush my teeth and I go in there and my brand new toothbrush is gone. I keep my toothbrush in a cup under the sink in the cupboard because I kept catching dad using my toothbrush and my nice new toothbrush is gone. Then I see its been jammed into one of the holes in my parent's toothbrush holder jammed in with another toothbrush and cannot be removed, we are probably going to break this thing trying to get the brushes out, not that I want to ever use my toothbrush again now. I sigh and take out another new toothbrush out of the packet I only just bought. After I finish cleaning my teeth I go to wash my face and find my Sukin sensitive cleansing lotion is empty and I can't even take care of my skin at the end of a horrible day. I sigh and pack up all my things from the counter top of the bathroom and take them into my room. I dump them into a toiletries bag knowing from now on I'll be carrying a travel bag into my own bathroom like a tourist in my own home because of a man who has hurt me more than any person in my entire life who thanks me for caring about him and preventing him from coming to harm by screaming abuse at me every day of my life.

We have gone an entire day under great duress without any thank you's, or I love you's, or apologies, or any kind words. And we'll do the same tomorrow.