The Commode Conundrum

commode

kəˈməʊd

noun

1 a piece of furniture containing a concealed chamber pot.

2 a toilet.

3 a movable washstand. historical

4 a chest of drawers or chiffonier of a decorative type popular in the 18th century.

Our divine drudge has reached a new level in her Looking After Parents Challenge. There has been A Decline in her dad. Possibly another small stroke. Opinions vary among the myriad of health professionals she deals with. There are, she thinks, now six ‘teams' involved. She keeps intending to make a map, or possibly a Venn Diagram, but forgetting as she now has the concentration and focus of a gnatt. How long can gnatts focus for she wonders? Do gnatts even, actually think? Why are gnatts - or gnats? or maybe nats if you’re American? (spelling has never been her strong point and she is dyslexic) always mentioned in relation to short concentration spans?

These teams get info mixed up, fail to communicate with each other very well, make a variety of mistakes, vary in efficiency and the ability to Make Things Happen, and can prescribe medication, ‘meds’ as we all say (she can speak heath professional language reasonably well now). This generates a great deal of work for our heroine and she spends a LOT of time on the phone Trying To Sort Things Out.

She's wondering about doing a small comparative study of irritating NHS hold music and it's effects on family carers but there's that concentration issue... Sometimes she still has Creative Ideas but mostly the spark fades before they can manifest and they disappear like dying fireflies. She often feels them crunching under her feet while she lifts and washes and wipes and talks and talks and talks... Her words making (hopefully) a bridge of bright inconsequential chatter her Dad can reach across for distraction and reassurance. 'I'm here’, she’s mostly saying, you’re not alone, “I've got you, you won't fall''. Also she’s his memory, his ‘notebook’ they call it. He has almost no short-term recall at all now. He’s fading. Getting ready to leave this body, this world, and that can’t be spoken about so we stick to the practical, the political, the factual. How do you feel about dying, are you afraid? is not a question within the bounds of their relationship but anything ‘bloody Boris’ has done will do nicely.

The talk is often of the state of the NHS. That ailing institution, beloved of the Brits and part of the national psyche. The glorious concept of care from cradle to grave, staffed by amazing examples of humanity and bleeding from a million bureaucratic incompetencies. We don't do conspiracy theories but we do do frustration/analysis and gratitude (sometimes all at the same time). We have never agreed politically before so in a lifetime of oppositional thinking this is an odd gift. We only really agree on the 'this is stupid and corrupt and they're all bastards' level re the government, however our heroine will take what she can get...

As she handles her father's body more and more each day - lifting, washing, wiping... , they become closer. Not just on the physical level, but the ideological too. Suddenly the 'rights' of minorities - now he's a disabled person - have real meaning for him, and a system which favours those with privilege becomes clear. He's a white 'working class made good' man of a certain generation, who was bright and got a scholarship to a ‘good’ school, and so knows a few things about both privilege and disadvantage: but he's always been of the 'pull yourself up by your bootstraps' school of thought... Now he sees resources are NOT fairly distributed and people don't get equal chances in life... This is currently getting played out in the arena of the NHS commode...

Our heroine (and her Parents) have an underlying attitude of immense gratitude for the NHS, and sorrow for its wounds: although the holes in it, and ridiculousness, and all the rest drive her MAD! The 'other' part of her family (she’s married to a Guinean) lives in a country where there is no free healthcare and bits of it regularly suffer and/or die because of this. Her life haemorrhages money overseas for medicine, treatment, taxis to hospital, endless crisis management and tragedy. This is a separate story and not part of this tale... A baseline of Gratitude for what she has access to; 'God bless the NHS' (although actually she doesn't believe in God with a capital G and is not sure any deity can help save a failing healthcare system!)

However, on a practical, day to day, life of A Family Carer (with two parents who have very different health needs). Now pre-diabetic herself & suffering from Stress and currently undiagnosed bowel issues), it is A NIGHTMARE. It is also 'A Postcode Lottery', a National Treasure, an impenetrable maze of Teams and Departments and semi privatised subsections, and the most frustrating mass of bureaucratic incompetency she's had to deal with since A Visa Issue with an African husband and the joys of the Home Office. (Also another story, some of it even in published form! Look for the Tragikal Tales of a sometimes Princess if you’re interested). Mostly, ‘the system’ is An Impenetrable Maze.

So the battle with bureaucracy, NHS bureaucracy in particular, continues to dominate our heroine's days. Because her dad has had A Decline - in both mobility and cognition - more Equipment is needed. This Equipment is provided by the NHS via a request from one of the Teams. That Venn Diagram she’s not yet made would be helpful here as she could then remember which team can be contacted to ask for which things! Currently she just randomly asks until she gets the right team or department! She can request an equipment request but there often has to be an Assessment. Then a physiotherapist (physio), or Occupational Therapist (OT), or member of the Palliative Team will suggest something that will be Useful or Necessary when caring for someone at home who is now ‘officially’ dying and then they can officially request it.

It gets brought in a big van with a friendly and helpful driver who carries things, and sometimes explains them (depending on which driver). There has been one, quite spectacular exception, to the friendly and helpful theme thus far. Grumpy and downright unhelpful (as well as delivering the wrong things, and in fact to the wrong house too - next door, but that’s a separate issue). This was on a particularly bad day and reduced our heroine to tears. She was left with a garage full of ‘wrong’ commodes and a sense that no-one cared much that she couldn’t physically manage any of them!

Later she pulled herself together, reported him and requested any other driver for drop offs, emphasising the Friendly and Helpful theme of the others. She hopes the promised chat with said driver means he won’t subject other exhausted and emotionally fragile people to such unpleasantness as well as never having to deal with him again. If so, it was worth the discomfort of the terrible hold music! There is always the issue of considering other service users (see, fluent ‘NHS speak!). She often feels sad for those, who, unlike her dad, have no Champion to Battle the Bureaucracy on their behalf.

For quite a while there has been A Commode. Plus various other toilet related things. Also special cushions to prevent pressure sores, and a wheelchair. Now this commode is to be changed, by order of a physio, for one with wheels, and herein lies one of the current problems! The van came, the new commode was (helpfully) delivered, and carried upstairs by a particularly Friendly and Helpful driver. It is not high enough - the other, unwheeled one was adjustable. So although she can now bring the commode next to the bed and also use it as a wheelchair to get her dad to the stairlift, it is very difficult for him to get on and off it!

She talks to the physio about this, and the O.T and the lead nurse in the palliative team. She talks, she suspects, rather too much, to just about everyone, about it! She rings, eventually, because of the aforementioned Problem of the Unpenetrable Maze that constitutes The Health Service, the company that does the deliveries. Do they have a commode with wheels that is height adjustable? This doesn't seem like an unreasonable request. The previous commode was height adjustable, most of the other equipment is height adjustable, and people come in different sizes. It seems however, that this IS A Problem. The part of the country she happens to live in doesn't supply height adjustable wheeled commodes as 'standard'! A Special Request must be made. No-one, however, seems inclined to explain who has to make this or how!!

Our divine drudge is back on the phone Trying To Sort Things Out. She has been through various departments, and been subjected to a range of annoying messages and Horrible Hold Music. She was calm and determined twenty minutes ago but now she is Fed Up, grumpy, confused and has a headache! Some of the things that drive her crazy, other than the vileness of the hold music (try and read this listening to hold music of some kind, to get a full sensory experience), are the Selection Process and The Recorded message.

Also her parents have a habit of sharing an anxiety or an opinion or asking a question, while she is listening to a recorded message telling her to 'listen carefully as the options have changed' then reeling off a selection of options that generally doesn't include the problem she needs to deal with or the department she may have a chance to deal with it in. This is distracting and often causes her to have to ‘go round again’, never is it helpful or clarifying!

Press option 1 if you are A Prescriber (this means a health professional not her). Family Carers cannot prescribe or make requests for equipment, they can only request it to be changed, or fixed, or removed. Press option 2 if you are a Service User.. She knows this lingo, they are Service Users, currently very heavy service users, and the service - with that underlying attitude of gratitude - is not quite up to scratch.

So far so good. She selects option two, pressing the 2 button on the phone as instructed, while trying to make breakfast with the phone on speaker. Option two, as per the rules of modern life and telephone systems, now presents her with another set of choices as she progresses through the Impenetrable Maze. Listening carefully, as these options too may have changed, she can't find anything suitable. A repair? not really, but that seems closest to their current needs and this particular phone loop has no 'for anything else press hash, or star, or 7', or whatever else signifies the 'you have reached the end of the line and your needs don't fit into our boxes' option!

She is about to press 5 and launch into her explanation of 'I know this may not be the right department/team but....' at which she has had much practice and is quite skilled. But she is interrupted by a need from the real world because she momentarily stopped multitasking and has not made her dad his breakfast cuppa! He is Complaining! This is not the simple task it used to be because all drinks must now be thickened to a Level 1 on some scale she hasn't yet learned as it was only explained and implemented yesterday by a somewhat confusing new person who didn’t seem to be part of any current team.

This is To Prevent Choking. A Good Thing - choking is undesirable (however you attempt to spell it). The explanation however was over technical and A Bit Worrying. She has to accompany Level 1 thickener with a Level 6 diet. This was briefly explained and then she was told to Google it. The whole interaction was quite tricky. She has studied anatomy, although a long time ago, so understood most of it. Her mum, who was unfortunately in the room while the Speech and Language (and swallowing, but confusingly that isn’t in the job title, just implied) therapist was Explaining, did not, and is even more Anxious. She did a bit of counter explaining about What her Dad will Eat (this is quite limited although includes anything with chocolate or ‘pudding’ - hence his diabetes) and that she (mostly) knows what she’s doing, but it didn’t help much!

The ‘levels’ of thickener and dietary restrictions are new and unknown and said jargon must now be mastered. There is a massive increase in Anxiety in her mum. This is from a base level of already high anxiety and a tendency to catastrophize (although catastrophization isn’t a medical diagnosis, just her own). This is Unsurprising as choking and death by choking were talked about a lot. She was a bit anxious about it herself, and also quite muddled.

Her dad is past anxiety on that level now, even though an attempt was made by the health professional doing the complicated explaining, to get him To Understand... He did agree that choking could cause death, which was what she seemed to want, and she mostly left him alone after that and concentrated on over officious delivery of masses of info and being scary. ‘We’ were warned that we must be careful of prosecution. Later our heroine wondered – but by who? Also for what? Disobeying NHS dietary restrictions or causing choking? The choking has always happened a bit, since the stroke, it’s just worse now. At the time it wasn’t possible to think clearly enough to query this. They, collectively, informed the health professional – who came from yet another team but hopefully one they won’t have regular contact with – that there would be certain exceptions to said dietary restrictions and one of them would be chocolate! Her Dad DID pay attention to this particular bit of the conversation she noticed. All three were in agreement here so the health professional had to write it down!

Hence tea must be specially thickened and now she's lost her thread.. What number for the 'nearest to her problem'? What is she explaining? Oh yes, the necessity for a height adjustable commode. She knows they exist and A Special Request can be made to order one. How this can be put in motion no-one seems inclined to explain, or to activate such a process... Tea made, she stops thinking about choking and How To Prevent, and turns her mind back to Adjustable Commode hunting. Pressing option five (returns or repairs) and clearing her throat, she steps into the Impenetrable Maze.

After hours in the maze, interspersed with attempts to encourage the drinking of said tea by her Dad, (and several times warming it up in the microwave, how did carers manage before microwaves?) our heroine has made No Further Progress and can barely remember who she is and what she's trying to achieve. Her dad has fallen asleep several times and her mum has left the breakfast table to go and nap, sorry, watch TV, in the lounge.

She feels like she's coming unravelled. Life has been slowed down and somehow become fuller at the same time. The time it takes to get either parent to do anything seems to continually expand and she joins in the amazement of 'it's 4 o clock already' type statements... How did that happen?! Getting Her Dad Up is the day's major achievement and takes longer and longer; with more and more complications...

Although her mum gets herself up, in that she doesn’t need physical assistance this too is A Problem. Since her breakdown (partly caused by an incredibly unfortunate psychotic reaction to anaesthetic after a back operation, but again a separate story) and subsequent ‘mental health problems’; her mum finds everything difficult. This is particularly true for the getting up process as it involves most of her terror areas plus decisions, which are tricky and torturous things.

So a parallel process of Getting Up happens in two bedrooms and she has to be involved in both. On a ‘bad’ day it can take three hours for her mum to get from bed to fully dressed and not Losing It with her is a daily task at which our heroine continually fails. Encouragement can turn to frustration and despair and sometimes she shouts, and that can lead to all sorts of emotional problems for them both.

She has to continually pop into her mum’s room during the Getting Dad Up process, to see where she’s at and encourage. Her mum can go into an almost catatonic state and slump over on the loo, and literally be stuck like that for hours. One morning, she wrote it down as ‘evidence’ for the mental health team, it was two hours twenty mins on the loo like that, mostly head between knees. How she can do this is amazing, it looks really uncomfortable. Breaking said ‘toilet trance’ and encouraging the putting on of knickers, then other clothing is Tricky at best and yet more multitasking while dealing with her Dad’s limited mobility needs.

Now, there is an air pump mattress in her Dad’s room (again Helpfully carried up the stairs by the friendly driver), to prevent bed sores. This makes a noise and a vibration that can be heard/felt in the room next door (where she sometimes stays the night), and the kitchen, where she often is. Added to the variety of terrible hold music she has to endure it is Too Much Noise and is Getting on Her Nerves.

Actually, this last statement sums up everything. She feels strung out tight, like a wire about to snap. Her body feels like a distant annoyance, bits of it hurt and she's both exhausted and over alert. Her Dad needs lifting and helping and supporting and washing and feeding ... Mostly it is her tending to his bodily needs, with occasional relief when her sister visits; although there are now carers two mornings and two evenings and this is a Huge Relief. Getting the carers has been a massive struggle, there was a lot of resistance. Nobody else (Dad, Mum, sister) seems to want it or think it’s necessary, but she insisted and insisted and did everything short of stamping her feet and shouting (at least not when anyone else was looking!).

When her sister comes to stay, an occurrence that is becoming more frequent now her Dad is officially ‘Dying’, this is both a relief/release from the physical drudgery and a source of further stress as she has both Anxieties and Opinions. One of the Opinions is that she knows best about everything, and this is tiring, irritating and disheartening as well as maddening; sometimes causing almost unmanageable rage, or storms of tears in our heroine (only when no-one is looking, often in the garage). She does know that this is because she is overtired and undereisllient, but knowing doesn’t help with emotional reactions.

Our heroine has occasional fantasies about loving and supportive families and further adds to her miseries that way. Positive Thinking, that's what's needed here, and Practical Problem Solving… Where are these things when she needs them most? Not in the fridge or the medicine cupboard. Maybe they got emptied down the loo with the commode contents. She is British so she Puts The Kettle On!

She drinks her tea and considers. Not only is she tired from the adjustable wheeled commode quest, but from the many other things that Must Be Done. She is currently bombarded by health professionals and the flurry of telephone calls that goes with them. Her Dad's GP, wonderful, enthusiastic, undaunted and never short of a suggestion, has been to visit. So have two of the nurses on The Palliative team, warm, supportive and kind. Kindness now mostly makes her cry.

The weirdness of a post pandemic situation, where all health professionals must wear a mask indoors with patients (who are not quite clients but often service users) and cannot be given tea, adds to the 'them and us' situation. We must wear masks in hospitals or other medical settings. But as her father fades more and more medical consultations and checks become domiciliary (see how easily our heroine uses the terminology now!) It just feels weird talking to masked people, unmasked, in a house. It also adds to her dad’s confusion as he sort of remembers The Covid Crisis but thinks it’s all over. Not seeing people’s faces properly is not helpful and masks can seriously add to communication problems.

Another day dawns and commodes are still dominating the greater part of our divine drudge’s consciousness. The quest for the wheeled AND adjustable NHS commode continues. There are also a number of other quests and many Obstacles to Overcome. She sits and smokes on her doorstep and tries to consider her Next Moves.

Giving up smoking remains, stubbornly, on her To Do List. This means each day begins with that particular internal battle and it is Not Helpful. Having lost, again, against the pull of nicotine addiction she strives valiantly not to sink into Self Loathing and Despair. Any quest or task undertaken from the pit of self-loathing or the ocean of despair is doubly difficult, as she knows from repeated practice. Tea is required for comfort, which feels hard to find today.

The parental household, which fortunately has a garage, is now possessed of a variety of commodes. There have been several deliveries, most of which have been Wrong. Currently there are four kinds of The Wrong Commode. One alarmingly large, (for a shower apparently??!) which she will Never Manage (plus of course it isn't adjustable although it does have wheels!) There have been several Conversations with health professionals and two more Assessments. There is still not a wheeled adjustable commode, so she and her dad struggle on with wheeled and not adjustable and just a bit too low to get out of easily. For a person who can no longer really walk and who struggles to stand, it’s even harder to get out of something if it’s too low because you can’t push with your legs properly. This structural problem is Not Helping, in the mornings, and as her Dad spends more time in bed, whole days now sometimes, using the wrong height of commode is a problem they both have to face more and more frequently.

She herself has another Assessment pending and must make An Advanced Care Plan. They have A Care Plan and a Respect Form. Carefully filled in on Official forms (done after his stroke years ago but recently updated) and logged with the Appropriate Authorities. All this basically comes down to is that her Dad wishes to die at home if at all possible (and it’s her job to make that possible,) and that he doesn't want a variety of interventions that would lengthen that process. This has to be continually repeated to various teams and she’s grateful it’s been written down officially and so can be referred to or produced if necessary.

Help is at Hand apparently. She fervently wishes 'someone to deal with the commode issue' could be part of said Advanced Care Plan, but is not hopeful about that. As well as a variety of Equipment to help with moving people around who can't move themselves much anymore ,there is to be A Care Package (within allowable NHS limits, no-one is available to help with shopping or cooking or cleaning, it has been Made Clear. But (and I shall start a sentence with but, so there!) even in her wildest dreams she never thought there would be! This will mean changing to a different Care Agency, for complex reasons involving NHS budgets and who is ‘on the list’. There will be two people to do what she’s struggling to do, four times each day...

This will be a lot of organising but means her physical burden of drudgery will be much lighter. She can’t quite believe this. It’s a sort of magic caused by the Palliative team. Apparently, people who are Officially Terminal and wish to die at home get free care - who knew?! Well, obviously the Palliative Team, but she’d no idea and no-one had ever mentioned it before. There must be a discussion with her sister about which agency and various other things, but this is a real thing and will happen soon.

There is also possibly money for her for A Carer's Break - although it has also been Made Clear this will Take Time and is discretionary Her long journey with her Dad is coming to an end. She has never accompanied a dying person so closely before and it feels like a massive undertaking with Too Much Responsibility. He’s never died before so that’s both of them not knowing what to do or how to do it!

She has another fag and feels slightly sick. This feeling slightly sick is a more or less constant physical accompaniment to her mental and emotional cartwheels, commode related and otherwise. It is (partly) Adrenaline and must be both endured and not taken off her personal To Do list. Look After yourself. The carer's dilemma and the mantra repeated to her by every health professional she deals with. How? With what? (no available energetic or material resources) What does that even mean? This must be included in the Advanced Care Plan apparently.

Trying to think about anything apart from her Dads immediate needs, the next fag, or commodes, is quite hard. She cannot concentrate properly (Adrenaline again!). Her mind skitters and slides off things and her thoughts fragment. Sitting on her doorstep, today being an 'off' day due to her sister being 'on', she attempts to focus on Her Own Needs but is hampered by the other To Do List.

This one pertains to the organisational aspects of what little remains of her 'personal life'. At the top, as it has been for several weeks, is the impossible task of making the council website work so she can renew her residents' parking permit and stop getting tickets for parking her own car outside her own house! This is, of course, like all tasks involving council websites, not as straightforward as it should be.

It's now three o'clock in the morning and our divine drudge is awake and Fretting About Things. This is becoming a regular occurrence and whatever her subconscious is doing that keeps causing early morning waking she wishes it wasn't! Commodes, procurement of suitable one, are obviously on her mind. There has been another delivery and the parental household IS now in possession of a wheeled adjustable commode. This is not quite the triumph it should be because the brakes don't work so it can't actually be used! Her sister informs her of this but it is Saturday and she’ll be leaving Sunday so the task of getting another, with working brakes, will fall to our heroine.

Applying her attitude of gratitude isn't going to help with this so she must return to The Maze. She is still without a Residents Parking Permit also so that too needs Dealing With. Then there is The Emotional Stuff... She is very tired physically as her Dad is now unable to get out of bed unaided. This means a lot of complicated manoeuvring with special sliding sheets and a grab wotsit over the bed.

It also means a lot of clambering around the bed and hauling him about. This can be tricky. He gets stuck and can't always turn over or move up the bed and together they do a lot of '1,2,3 go' sort of collective efforts...

The bed, bought by The Family at the start of this looking after Dad at home four years ago lark, is very clever and has electrics. It can be raised and lowered, and bits of it can be tilted for sitting up or raising feet. It also has wheels, and breaks, and now a special mattress to prevent bed sores. This mattress doesn’t belong to The Family but to the NHS and replaced the one they had several months ago when foot ulcers became a permanent issue.

This is all very well and extremely helpful and how anyone manages without she can't imagine (actually she can but it makes her shudder!). However, our heroine is Very Short and this is a disadvantage when trying to move another adult around in a bed, no matter how clever the actual bed may be. They have developed a few ways, all involving quite a bit of clambering about. The room is not really big enough for the bed to be in the middle so it is against two walls.

This means taking the breaks off the wheels and moving the table and the bedside cabinet and then moving the bed away from the walls so she can either get to the other side or behind the bedhead. Then of course remembering to put all the bloody breaks back on before attempting any maneuvers. The breaks on the bed, like those on commodes etc.. are on top of the wheels and designed to be flipped up and down with a foot. The problem, (and the reader should know by now there is always at least one problem with any 'helpful' equipment), is that they are Very Stiff. So this process is not easy! Bed Manoeuvres are becoming harder as her dad gets weaker.

Ease of break usage also depends on the type of footwear. Heavy boots are helpful in operating breaks but must be removed before climbing about on the actual bed. Lighter footwear is more problematic. A couple of pairs of shoes are now wrecked. Occasionally she just has to use her hands and this HURTS! She has had a couple of incidents with both bed and commode breaks and a trapped thumb which is unpleasant and ouchy!

When she is tired, which feels like always these days, she gets mixed up about off and on positions of brakes, and this is both annoying and potentially dangerous. Fortunately no one has done a risk assessment on her and most of the bruising and toe injuries don’t show!

The Hauling Dad Up The Bed (HUTB) maneuver they are now both getting the hang of but there are Hazards... It goes like this.

1. Move bedside cabinet and new (bought by sister) adjustable bedside table thingy without knocking everything off. Both surfaces accumulate things like medicines, tissues, bottles of water, a small (thus easily lost!) mobile phone, teeth (his, she has not yet got to the point of taking hers out to perform Bed Manoeuvres), flannels and so on. Thus the not knocking things off part of this activity is problematic.

She spends quite a bit of time moving stuff around and trying to find A Sensible Place for it. Her Dad can still reach for things, like his bottle of water, and needs them to be actually reachable. So the possibility of clear surfaces, not having to move things around and knocking them off onto the floor, is not a realistic one.

2. (after picking up various things and trying not to swear too much) Unlock brakes from all four bed wheels. As previously mentioned this can be quite hard and changing into a pair of steel toecap boots each time she needs to do it isn't really feasible!

She now has a collection of foot injuries from Equipment. The most recent and painful being from a different bit of kit – the ‘rotunda’. This is fabulous and will be described later but it is also Very Heavy, and as you remember our heroine is Very Short. She slammed it against her big toe on the right foot and has crushed and broken the nail below the quick and it hurts A LOT and currently makes dealing with brakes very painful.

Luckily her dad is used to her swearing by now. In fact, her swearing has become so normal that a man who never swore (at least in The Family Home, she has no idea what he was like at work) now says ‘that’s a bit shit’ as casually as she does...

3. Move bed away from window towards sink (about a foot of space if the bottom of the bed touches the sink). Part three is now more difficult than it was because of the new grabby gadget thing that has its own stand behind the bedhead. This is another thing to manoeuvre around and bang parts of body on. It was provided by her sister, part of the bed equipment of a dying friend who has now died. It can be Very Useful in bed manoeuvres but it also comes with its own set of challenges.

Firstly, it has a metal stand behind the bed so this gets in the way and can be banged into, so a problem for her. Secondly, the plastic handle that her dad can grab, dangling from a cord above the bed, is a potential problem for him. If it is not looped up onto the pole sitting up, aided by the beds’ electrics, means it smacks him on the head. This is not a problem for this maneuver, HDUB, or Turning Over, but is a huge problem for Sitting Up.

She is, of course, too short to reach the pole so has to stand on something to do it and so now 3 has 3a ‘loop handle onto pole’ as a necessary sub maneuver. If it’s adjusted so it doesn’t bonk her Dad on the head when he sits up then he can’t reach it so it’s pointless. she wishes she’d practiced hoopla skills more – anyway it’s triangular not circular so harder to throw onto a pole. She can climb on the commode, as it has a seat to turn it into a wheelchair, to reach the pole to loop the handle over, then get it down for the Sitting Up maneuver. However PDUB requires the handle to be down, and grabable, so it’s yet another thing to be in the way.

4. Lower bed to ground as far as possible (she IS very short remember!) Clever electrics make this doable. No actual manoeuvring of her dad’s body has thus far taken place, he’s still stuck/wet/ etc at this point. There has often been a lot of muttering and swearing from our heroine, which her dad is quite used to, and on a good day quite a lot of laughter, sometimes from them both.

5. Get behind bedhead (without banging too many bits of herself on said pole, stubbing toes on sticking out wheels etc..) Sometimes she stands on the actual bed frame at the side, but this is for Turning Over not PDUB. If she is performing Turning Over she can raise the top of the bed a little bit and loop the handle over the pole at this point and that is a whole lot easier than standing on the commode to do it. Ditto Sitting Up. Maybe she needs to rethink this sequence?

6. Encourage Dad to hold handle of grabby gadget to assist with manoeuvre. She is Not Convinced this is actually helpful now, it used to be when he had a bit more strength, but it maintains the idea of his independence.

7. Place hands under his armpits. It has taken some time, effort and experimentation on her part, and she suspects some discomfort on his, to work out which bits of him to grab hold of for Manoeuvres.

This is a hard part of The Carers Life because of issues around respect for other people's bodies and not wanting to cause discomfort or pain - or not more than is necessary. It's particularly hard when the person makes an involuntary noise, and you know you’ve been the cause of that pain.

People do not come with convenient handles or the right sort of sticky out bits so you can move them around. The under the armpits hold seems to work for this manoeuvre however and not cause either of them too much discomfort.

8. Count out loud '1,2,3 and..' pull dad towards head of bed while he pulls on grabby thing 'to help'. This doesn’t always ‘work’ first time and sometimes has to be repeated.

9. Celebrate. They both say 'hooray' at the successful conclusion of this manoeuvre. Her dad usually says 'that's better' so there is a feeling that Something has been Achieved..

Thus far, this is their best movement.

Turning Over is much harder and generally involves her clambering around on the actual bed and many failed attempts. It needs a clear sequence, like Hauling Up The Bed (HUTB) but this has not yet evolved. Sitting Up isn’t too bad (apart from the bonking on the head with gadget aspect). Mostly it’s just pressing a button & moving legs (his not hers) so they don’t end up jammed against the footboard. Using the Commode is now so difficult and messy it can’t even be written about and has no sequence, at least nothing coherent that actually works every time!.

Whatever the Manoeuvre she is generally hot and sweaty afterward. Her Dad gets cold easily so the radiator is usually on, even in June. The clothing issue, like the footwear one, is a constant problem. A swimsuit (she's never worn a leotard in her life and isn't about to start now!) and steel toecaps (preferably with velcro fastenings of some sort, not laces, for ease of removal and reapplication to feet) maybe? A tightish T shirt, so it doesn't get caught on the edges of things? Maybe cycling shorts? Rather surprisingly there doesn't seem to be a range of Carers Clothing: practical but stylish. This is most definitely a Gap In The Market.

Putting aside her ideas for a line of clothing for carers – stylish but comfortable and including lightweight steel toecaps for dealing with brakes – our divine drudge tries to focus on The Commode Quest. Having spent some more time in The Maze she thinks she may have organised A Repair for the brakes on the adjustable wheeled commode currently sitting in the garage.

There is about to be A Big Change. Their manoeuvres are (almost) coming to an end. Others will step in, and probably be better at it. Because her dad is now Officially Terminal the wonders of the healthcare system will now Help at Home. There will be two people four times a day to do the washing and dressing. To help her dad get up, on the days he feels able – and to do the lifting and turning on days he does not; and generally deal with the commode and its contents.

There has been a conversation with her sister, who has done the organising part of this and spoken to the Care Commissioner and chosen a service, and they have Made a Plan about which times are best. Her Dad has Been Consulted although he’s a bit bemused as to why. Obviously her inadequacy in Bed Manoeuvres has gone unnoticed, or he’s just got used to it. He seems to accept, but not understand, I can't manage by myself. It is however a Huge Relief for our heroine, who really can’t manage much longer, and deepens her attitude of gratitude. It's going to take a lot of organising and some getting used to, and both parents are a bit confused about it.

Several days pass and it seems like the commode conundrum will finally be solved. A Delivery is due. She has also managed the personal triumph of negotiating the council website, finding an actual phone number and speaking to an actual person. She is now in possession of a Residents Parking Permit and has got 4 parking tickets cancelled as amazingly, they accepted her screenshot evidence that the website just kept generating a message saying ‘you do not have permission to do this on this account’, or whatever the exact wording was. It also means the early morning scramble to find a visitors' permit and put it in the car before 8am and forgetting to do this or not finding one, and the subsequent emotional turmoil of getting a ticket, is no longer part of daily life.

So our heroine's life is changing dramatically. There IS now an adjustable commode, with wheels AND brakes that work! This means the getting off can be managed more easily. The process of procurement of said item has taken just over three weeks in ‘real’ time but she feels several decades older and never found out who made the Special Request so she can direct some of her Gratitude at them. This Quest, however, is now over and she can concentrate on Other Things.

The vagaries of commode design do mean with this new one a vacuum gets created between the hole and her dad's bum and this can complicate the 'getting off' process, but they are developing techniques to combat this! Apparently a padded seat can be procured so this will be the next Quest. A flannel is NOT a good idea they have discovered, as it slides off into the poo. They’ve fiddled around with paper toilet seat covers and whatnots. Her Dad was an engineer in his working life, so problem solving still interests him. They are sure they’ll find a good system for combatting bottom vacuum but haven't achieved it yet.

There are also the wonderful 'pairs' of (mostly, with a few exceptions) efficient and cheerful women who arrive at four set intervals during the day (sort of, there are a few communications issues with the office about this but she’s hoping for the best). They deal with what is termed 'personal care' (P.C). This means our heroine and her Dad are no longer alone, with the satellite sister, in their Manoeuvres. There are others to explain to, complain with, point out commode (and other kit related) inadequacies and generally share the ups and downs, (mostly downs now), of daily care for a dying person.

These women turn and change both Dad and bed. Wash, wipe and dress him on the days he feels able to get out of bed, just wash and change on the days he doesn’t. They deal with the commode and its contents. They are all taller than our heroine so manage better. Also they are in pairs for lifting, turning and so on. They deal very nicely with her Dad, who is confused about More Help and wonders why suddenly two people are Necessary to Do Things.

It's all working reasonably well so far. Her mum is just about coping with so much more interaction on a daily basis and our divine drudge is feeling less alone and definitely less physically tired and stressed. This all means she should have more 'quality time' with both parents, and a bit more time for herself. A mixed blessing this, as considering the ruins of her personal life and what was once a 'career' as a musician is both painful and daunting.

Still, there is the newest Quest, and sorting out the issues with this new Care company, and supervising everything to make sure it’s done properly. Also the question of meds and who will administer what, and level 6 diet to learn. Plus many other things. These will all be Another Story. So she puts the kettle on, deepens her attitude of gratitude to the NHS for the adjustable wheeled commode which will make their collective life easier, and unexpectedly bursts into tears – relief probably!

My Dad died, peacefully, at home where he wanted to be, in July 2022 so we are now both free of the demands of caring for his body. Caring for him was the most challenging, and amazing, experience, (bar parenting), I have ever had and I am grateful for the privilege. I will never forget our struggles together, or my gratitude to those who helped along the way. Nor will I ever forget just how hard it was to get the ‘right’ commode and my worry for ‘service users’ who don’t have others to help Battle the Bureaucracy, and navigate the Impenetrable Maze.

There would have been more pictures and explanations of ‘kit’ with this story but our heroine, now bereaved, managed to lose her phone with all the pictures she’s carefully taken! All that remains is one photo of most of it in the garage, awaiting collection by a Friendly and Helpful driver.