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Sunday, May 12, 2013

Between you, me and the bedpost

It was with great sadness that I witnessed the departure of our double bed from this room from where now, at 4.32 am, I start to tap this out on an iPad.

   There would be few who can't appreciate the significance of being forced to swap from a place shared with a loved one, a lover, to a single bed, especially one that seems composed of bars and is overlooked by what appears remarkably like the gallows. But its time has well and truly come, and I've been using it for a few weeks now.

   In my mind, as this bed was parked in the corner of the room patiently waiting for its time to come, I always thought of it as my death bed. As it turns out, it is probably unlikely to be, but in a way, I hope it is. That's another story.

   So here it sits, in the middle of the room, with me in it. Tracey has thought out the best possible arrangement of items around it with great care. She's made the bed feel like something you find in a bedroom and not a hospital ward. The ancient treadle Singer sewing machine bench, so evocative of ours as children, has a cloth over it, and essential items are within arm's reach.

   Only my left hand is capable of picking things up with any confidence on my part, and even that is a tricky operation. My movement is now ever more limited, so I can reach only so far without enormous effort, involving the bed pole above me gripped by my right hand, which still takes one type of strength, and the bed bar to which my left hand clings.

   In other words, critical things must be within what seems easy reach – to you maybe. The width of a fingernail can mean the difference between what I can reach and what I can't.

   Things on the tray are placed precisely.  But I won't talk about that now. This is about the bed.

   I am fortunate to live in a time of hydraulics, powered by electricity. It has three items that can be adjusted. One is the most obvious. The top one-third, the pillow section, can be raised and lowered. Having previously tried to arrange pillows behind me on our double bed to be able to sit up a bit, I can tell you it is very frustrating. It seems right for a brief time, but then I want to move slightly. The arrangement collapses. You get the picture.

   But with this bed, I can get the angle just right if I want to sit up. Not only that, I can change it a little if it becomes uncomfortable, which is inevitable. The human body is made for movement, not to be static for any length of time.

   The second thing that can be varied is the height of the section under my knees.

   I didn't appreciate how vital this is until I spent longer periods in bed lying on my back. My heels start to burn. They're burning now and will be red. I'm not checking – it's too cold. Outside it's zero.

   If I raise the space under my knees, it helps. It doesn't solve it outright because even then the extra blood in the heels causes this discomfort. But by changing the angle frequently, it makes a difference. It will stop sores developing on the heels, I hope.  Certainly there's no evidence of anything like that.

   The whole bed is designed to try to prevent bedsores from developing. I never imagined in my wildest dreams that I would ever be in danger of these.

   Right now, curse, damn and blast it, I have to go to the bathroom. This is a major operation. I have to dismantle my precisely arranged iPad on its Podpad to get it safely back on the tray. (Bless you a thousand times for that wonderful birthday present, Ros and Dave!) But now, I have to get up briefly, which means I have to lower the pillow section and the knee adjuster so the bed is flat, and carefully manoeuvre the iPad on to the tray. You have no idea how heavy an iPad feels with weakened muscles.

   Then I stand up, which is a shaky business. Let's leave out describing all the difficulties in doing that and what comes next. Too bad I have to drink so much water.    
★     ★     ★     ★     ★  

   I'm back. At least in having to get up I was able to pick up my glasses that I left on the walker. I meant to do that before going to bed, but I forgot, and now have been paying the price, even though the walker is less than a metre away. So I've typed everything thus far virtually blind.

IPad with Podpad
   But in reaching the iPad from the tray after the bathroom visit, I have flipped neatly on to the floor my carefully-placed-so-I-thought reading glasses, and it would mean going through the entire getting-up process again to find and retrieve them.

   So I'm typing blind again. I must remember to find them when I get up or I may stand on them. That would be the last straw – almost.

   The third capability of the bed is an adjustment that's becoming increasingly more critical – the up and down movement of the entire bed. It's something I never thought about when I was able bodied. Most of you won't either.

   I need to raise the bed to do little things like turn out the light. Don't laugh. In order to reach the lamp switch, that tiny difference can be critical. I need the bed at a high point when I want to get up, so I can grab the handgrip with my right hand. If the bed is any lower, I can't reach it before a right arm tremor stops me. When I swing around to get up, the height of the bed allows me to steady myself.

   When I need to get my shoes and socks on – another major op – the bed has to be just the right height. I'll spare you the details of achieving that feat (feet?), but in ain't easy.

   Before I get back into the bed I must lower it so my feet are firmly on the floor, and with one good leg to be able to get in rather than dropping off the edge. That way I can push myself far enough into the bed to complete Phase 2.

   With the good foot pushing the useless leg and by hanging from the bedpole with the left hand I can inch the right leg over past the centre point. That combined with the gallows allow me to swing in to that point. Not quite Tarzan but you get the idea. Then I can raise the bed to a good height to read, or to switch off the light.

   Of course, I could call Tracey in to do all this, but every few minutes I'd need something else. She already runs round after me way more than you can imagine unless you're in a similar position – and you carers and care-receivers who are reading this know what it's like. But while I can do things, even with great effort, I should, for obvious reasons. Each day I can do less. I need to do what I can while it's possible.

   Now, I suppose I better put this away as it's nearly 6 am.  I'll try not to drop the iPad on its way to the tray. Here we go....

Later: I spy the glasses down in a position impossible to reach – on the treadle of the sewing machine. But wait. If I lower the bed as far as it can go, and reach across under the Singer table, and stretch out like blazes, I can just...reach. Yeah. Now raise the bed again. Something else achieved. All by myself.


  1. I'm glad that stretching out like blazes didn't make you fall off! Rubbing ointment into heels to help prevent bedsores? I'm doing that right now with breaking in a new pair of shoes -apparently keeping the skin soft and not dried out helps.

    The trials of losing mobility -a huge challenge. People often use the word 'challenge' too lightly, but that's not how I mean it here.

    Michael bought me a kindle (he's so thoughtful, and it was a surprise) but it's smaller than yours, a bit TOO small perhaps.

    Always lovely to hear from you here in blog land. How are your dreams these days?
    Julie M. xx

    1. Hi Julie. No, the bedbar would make it impossible to fall off reaching down to there. I think you're right about keeping the skin supple. It doesn't solve the primary problem – we can blame good old gravity for that – but it would help.

      My Kindle probably looks slightly bigger than it is because of the cover [which is very useful, btw] and I use it sideways, which I much prefer for many reasons. Looking at it in the photo it does look bigger that what it is. You will be able to download all those classics you never got a chance to read, and free! from Gutenberg

      My dreams these days are very peculiar indeed. Don't start me. Rarely nightmares, just... strange.

    2. PS. You could do worse than The Joys of Being a Woman by Winifred Kirkland [1918] It's a bit of a kick up the backside for male chauvinism of the era.

  2. Thank you again for the update Denis. In the accompanying photograph you seem, improbably, to have made yourself look quite comfortable. Wishing for you the best that is possible and, to take up Julie M's theme, sweet dreams.

    1. Really, in that position, I'm every bit as comfortable as I look. Some mornings I wake feeling so comfortable that I think, "Maybe the bad stuff was all a dream." Then I try to move my leg and realise... no. No miracles today.

  3. The bed looks very nice, not at all like an austere hospital bed. Good work Tracey. Could you get a long hook to pick up reading glasses?. They are annoying to recover at the best of times and always are the things that fall off. I hope you sleep well tonight with the room so nicely fixed up. Anne P.

    1. It hasn't come to that yet, Anne, but really, the problem in that case is getting into a position to use anything to do with picking up rather than that part of it. For some things, an arm extender would be helpful, but it would be one more thing to find a space for on the Singer, already carefully arranged.

      Being brutally frank, if this were a longterm project, like that for Steven Hawking, all sorts of modifications would be worth it. In this case, it simply isn't.

  4. It IS sad for you and Tracey to say goodbye to the double bed, for all those reasons that we here in Outer Blogland understand very well but still cannot of course feel it as you do. Being sensible and practical is what the head dictates but not always what the heart desires! Oh well, perhaps you should compose a song to your double bed, like Schaunard does to his overcoat in La Boheme! Thanks for posting the pic - it brings you closer to us somehow. We can picture you all tucked up - as I am about to be. Love and kisses.....

    1. I song to the double bed. Hmmm. It's a thought. The song to the single bed has already been done.

      Single Bed

      You must remember this....

  5. Ah Den....minus the hospital bed, you write precisely of our bedroom. Each movement, each turning over, the burning heals and anxiety about pressure wounds (sheep-skin has been the life-saver...under the bottom sheet), the "where are my glasses" problem when they are 1 inch away from where they usually are, the spilt drinks when fingers won't open on command,the annoying urgency to go to the toilet at 1.38 a.m. (why does the body favour that time, I wonder in my groggy state of sleep-deprivation?), the pillows that won't stay put and the blankets slipping down off cold shoulders, impossible to pull up without help from another.

    The minutae of life writ large with each heartbeat. The energy and focus now is not on the grand plans and universal concerns (people wonder why I take my rest in the Twitterverse - here is the answer) but now on each muscle movement, each placement of bone over bone, each decision to call, or not to call, to the other, "Sweetheart, can you help me please...".
    I am with you Den. I am with you Tracey.

    1. "where are my glasses" problem....the annoying urgency to go to the toilet at 1.38 a.m....the pillows that won't stay put and the blankets slipping down off cold shoulders, impossible to pull up without help from another.

      All so true. I haven't yet spilt the drink [it will happen] but I have experienced the fingers refusing to let go of things, even the walker. And getting all arranged with blankets perfectly but finding there's a patch on my back where the PJ top isn't quite down and it's just cold enough to annoy, but the only way way to fix it with a useless arm is to struggle to sit-up position try to get it down or tuck it in, then inch back to lying on the side, to find the cold patch has reappeared, doing it again, finally all under the blankets - and then I get a frantically itchy eyebrow or something. Have to scratch it and the blankets are screwed up....

      There are a dozen more ways to make it annoying. But hell it's good when it all works out. As in stopping hitting one's head against a brick wall.

      You so understand. As Dave does and how many other MS or otherwise disabled people. These things you discover only through experiencing them, or being the one called on to solve the problem.

  6. The double bed... It means so much.

    We struggle with that meaning and with the practicality - of unbroken sleep for Ros. The single bed, which I experience in Rehab is cold and lonely and desolate - but the motorised bits that you describe are brilliant.

    Thank you for persisting, in telling what is so seldom told, in speaking when so many might be silent. Thank you Tracey for caring for this man and Den for thinking, so carefully described here, of ways that you can care back.

    1. I understand very well. At this time your case is different to mine in the sense that you need to be turned [every 2 hours?] or assisted in other ways I don't [yet], and Ros may as well be right there as in another room for that reason apart from any other consideration.

      Right now for us it works better for Tracey to be able to get the best sleep possible to face the next day, because we have no idea what it might bring. I don't see how it's realistic or any advantage for Ros to be in another room.

      Thus you and I deal with our guilt for doing this to the ones we love most and who make these huge sacrifices, even though there's nothing we could have done to avoid what's happening. We can only take whatever steps carer and care-receiver deem most appropriate.

  7. now there's an event for the hospital bed Olympics, reaching the impossibly-fallen specs, and the gold medal goes to … DENIS! sad for the bidding adieu of the double bed, joy for adding to your comfort and, in a tiny way, your independence. it's the little things xt

    1. Yes, it's true. As my world shrinks - except for my virtual world, which expands all the time - then the little things are all magnified, in every way. That can be good, or bad.

      Thanks, Tracey. [Not b65, A2!] :-D

  8. Putting into words the minutiae of your decline is a great contribution to the world, Denis, one that shouldn't be underestimated. I'm sure a lot of your blog followers of a certain age are living experience in their heads, knowing this could well be their end of life experience. I feel every single loss of function with you, although I can only imagine the difficult feelings that accompany it. I would find it so hard to write what you are writing about. Mentally and physically. Thank you for your efforts as your work is truly enlightening. @cybahound

    1. Thanks for your comment. I sometimes wonder if these minutiae will be read by any but the already converted. Then I think, as you do, that it may prompt relevant people into considering and preparing for eventualities where such preparations matter.

      People always get put into some sort of care or get some help, but if they leave it too late to think about it, it may well be the last sort of assistance they would want. It's better to try exercising some control over your future while you can.

      Thank you, btw, for including your twitter name. Through it I can let you know I've responded.

  9. I take my hat off to you - which I know is an easy thing for me to do, and not so easy for you. I don't know how you retain your sunny tone through all of this. You are a man in a million.

    1. I know it seems like false humility, but I can't imagine why anybody else would not accept what can't be changed and work with it rather than waste energy on the wrong things. But then I see case studies where people can't face their illness and pretend all will be well, and end up with poor response to treatment.

      What makes a critical difference is the backup team. I can't tell you how different some of my decisions would have been through ignorance and miscalculation, but Tracey and I discussed medical strategies and we agreed on them. I know my family have provided moral and other support, and constantly do, but we've worked as a team in full agreement and openness. This has made it far less stressful, and we know for certain that stress is an incredibly important factor in how I feel.

      Tracey has done everything to keep my stress level down. Ironically this passes a lot of it on to her, which is a very difficult balancing act.

      Asian approaches to life and death have been a big factor for me in seeing things for what they are, but without untiring support of carers, we care-recipients would collapse in a heap no matter what our personal philosophies.

  10. Denis, I hope everyone who reads your work is enlivened. So many of us worry about too many trivialities in life, yet you are fighting a personal battle most will never experience with humour and grace.

    I hope more will stop by and be reminded their life "ain't half so bad after all".

    1. Should you ever get to see this response after all this time, let me say thank you for your kind words. Just today I have been composing something along the lines suggested in your last line. Quite a coincidence!

  11. A few things I used when caring for my bed bound grandmother. For the heels: Also had some sheepskin/wool devices, but the foam did much better. Also countered foot drop.

    The first bed I had for her was a Roto-Aire/aka Roto Rest. Aside from the familiar adjustments, it would also verrrry slowly rotate the mattress from side to side. It could be programmed to turn at set intervals, such as every 15 min. or every hour. I tried it out & it really wasn't too unpleasant - just odd. But, better than dicubitus.

    The next bed was a Clinitron/aka "sand bed". Cloth cover 'almost' filled with sand. When turned on, the cloth would fill with air & the sand would move around, letting the body rest on air & no pressure points. Unfortunately, a new subdivision was being built behind us & the power would go out frequently. So, she was laying on a couple inches of sand on a metal base - ouch!

    At the end, we went back to a standard hospital bed, with me turning her frequently. She never had a bed sore from home, but every time she went to the hospital, she'd come home with one. >:-( Because of this, she was more prone to tissue breakdown.

    Because she couldn't walk or even stand, I had a Hoyer lift to get her out of bed & into a wheelchair & then the reverse. Rather block & tackle looking, but it did the job & was easy for 1 person to use. Gramma liked to swing in it. :D We had the Classic Lift - hand pumped.

    Just a couple of suggestions to try to make you more comfortable & things easier for Tracey. :) xxxooo Pegs.

    1. Thanks very much for this, Peggy. That's useful information and may help others as well. Without sounding too defeatist, elaborate arrangements for me are probably a waste of time and money and I'll play it day by day. We have what we need and access to anything else we must have will be available even if I need admission to private hospital to have it. For others with a longer timeframe they would do well to take into account your advice.

  12. I would like to thank you, Denis, for what you do for so many people and for me among others. I came across your blog coincidentally and I am grateful for the coincidence. You teach us all, who read your blog, to live and love better. I am so sorry that for what you do for us, you pay so dearly.
    I am on a different continent than you, so this morning, when Australia still slept, I read your post and my day has started in a different way than it would have if I did not. I am more centred, more together, more grateful for my life. I trust I will be able to make this day better for others, this is important. So, thank you once again.

    1. It is very gratifying to read this and to make a difference. It's a comfort to me. May you be healthy and content with whatever life brings.


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