In order to drink while lying down (rather than disturbing my rest by sitting up) I use a cup fitted with a lid and a bendy straw. The lids are also useful when I transport the drinks from the kitchen to the bedroom: they prevent me from spilling liquid
on my walker and mean I make a much smaller mess if I happen to knock the cup onto the floor. For cold drinks I have constructed my own drinking jars from plastic food jars. I’ve cut a hole for the straw in the lid of an old 500g marmite jar. Simply
fill the jar with liquid, screw on the lid and pop in a straw.
For hot drinks I mostly use insulated travel mugs. They keep my tea warm for around 2 hours, so I have no need to get up and make another cup before my next scheduled ‘up time’. Look for ones that have a large enough hole in the lid to poke a straw through and have several layers of screw thread on the lid (otherwise the lids have a tendency to pop off when you drop them). I prefer ones with handles. I often remove the lid for 10-15 minutes after I return to bed to allow the drink to cool a bit: you need drinks a bit cooler if you’re drinking through a straw rather than direct.
I also have a small silicone cover that I can pop over an ordinary china cup: this prevents spillage in transit but does have to be removed before I put the straw in. You can buy such covers from dx.com (search for “silicone cup cover”) for about $5 including postage.
In order to minimise noise from people knocking on my front door (which opens straight into my bedroom), I have a laminated card stuck to the door at eye level, saying:
My husband has also screwed a piece of clear perspex (A0 size, about 850x120mm) to the ceiling above my bed. I slide pictures and maps into this and change them every few months. I used to simply blutak pictures to the ceiling but they had a tendency to fall back onto the bed: now they stay where they’re put! The pictures give me things to think about and places to imagine myself into :-)
Lastly, I keep an ‘eye pillow’ beside my bed. When my eyes are tired I find its coolness very restful. I also use it to cover my eyes when I’m restless and fretful and it often helps me to settle. I made the eye pillow myself from satin loosely filled with linseeds, but you can readily buy them online.
How does this help? I no longer need anti-dandruff shampoo, and conditioner, so only have to lift my arms over my head once. I can usually manage that.
Look for 'fractionated' or 'deodorised' coconut oil if you don't want to smell of coconuts. You can but this at health food stores, or online at places that sell supplies for home soap making. It costs around $20 for a 200mL jar but that should last you several years.
I once tried cutting my hair short (it’s naturally around waist-length) to see if that would make hair-washing easier. It was somewhat easier to wash than my usual long hair, but unfortunately needed to be washed twice as often. I’ve let it grow back to its full length and again wash it once per week. I’m sure it helps that my hair is thick and doesn’t tangle easily!
To make this possible I have a 'slipper' bed pan, two absorbent waterproof bed pads, around 25 reusable cloth wipes and a small bucket with a good lid. Here’s what I do.
When I need to use the toilet in bed, I roll to one side, spread an absorbent waterproof mat down where I was lying, roll back to where I was, pull down my underwear and slide a slipper bed pan under myself. If I need to do number twos I put the mat down as before but kneel over the bed pan rather than lying on it. When the bedpan is not in use I store a roll of toilet paper inside it. I find that I use a lot more toilet paper when I’m using the bed pan so it’s important that there’s plenty!
I have two waterproof mats so that I can always have a clean one available. I bought them from conni.co.nz for around $50-$60 each. I air the mat (draped on my walker) after every use. When it starts to smell (after multiple uses) I pop that one in the wash and get out the other one. It’s important not to fill the washing machine too full when you wash them: they’re stiff so they take up more room than you’d think. If I’m not well enough to manage laundry yet both mats are smelly I rub one of them with plenty of baking soda to absorb the smell. I’ve had the mats for around 10 years now and they’re both still in excellent condition.
After I’ve used the bed pan, if I expect to get up before I next need the toilet I simply leave it on my walker to deal with when I'm up. Otherwise I tip the contents into a small three litre lidded pail: the kind of small bucket that Cookie Time Christmas cookies come in. I always tip the contents of the bedpan into the bucket if it’s got faeces in it: otherwise the smell is bothersome. The Cookie Time bucket doesn’t have enough capacity for a whole day in bed: for that I use a proper bucket, also with a good lid.
At the end of the day, if the bedpan has only been used for urine, my husband rinses it out and leaves it to drip dry in the laundry sink; if it’s been used for faeces as well he cleans it with toilet cleaner. My bedpan is a molded plastic slipper pan with a lid. You can buy these from disability resource suppliers or some chemists for around $25-$40.
When I’m finished with the bedpan I clean my hands with wet wipes. I don’t like the smell of commercial wet wipes (even the nominally unscented ones) so I’ve cut reusable wipes out of soft, non-fraying towelling fabric instead. After use they get washed in our ordinary laundry. As they come back from the wash I fold them in thirds (like folding a letter) and stack them in a 2L icecream container. When I’ve collected 20 of them I pour over them a solution of 1 ½ cups boiling water, 1T shampoo and 1 ½ tsp vinegar. When that's cooled on them I transfer them to a smaller container ready for use. I made about 25 of them so that I’d always have some still available for use while I’m accumulating the next 20 clean ones.
I also find my reaching stick very useful for picking things up when I'm moving around the house.
I also have a 'banana chair' (or beach lounger chair) which we take with us whenever we go to the park or spend time with friends outside. I can lie completely horizontal if necessary, or the back section can be ratcheted up into a sitting position. It enables me to be outside and to be part of the group without wearing myself out sitting up. I also take this with me whenever I go somewhere where I might need to sit for a considerable length of time: to weddings, funerals or even to visit friends who don't have sofas long enough to properly lie down on.
The first is a beach wheelchair in which I can be transferred from the car to the sea. You can buy commercial beach wheelchairs but they're extremely expensive (I think that they start at around $3000 or $4000). We've made our own from a regular beach lounger chair and two special Wheeleez wheels: the same wheels used on commercial beach wheelchairs. They're wide wheels inflated at very low pressure which travel smoothly over sand and gravel. You can buy them from beachwheels.co.nz. Over the years we've further improved it with a flotation cushion at the front (so it doesn't tip me straight into the sea as soon as the water is deep enough for the wheels to float) and a strap on the front with which my husband pulls it along. Our setup cost about $500 – still not cheap, but cheaper than the commercial ones! Please contact me if you'd like some advice on making your own beach wheelchair or if you're in Auckland and would like to borrow ours to see how it works.
Secondly, I have a flotation aid that keeps me safe in the water without being held all the time. It is basically a ring, with a wide section on which I can lean and two arms that clip together to form a circle around my body. I made it out of strong mesh fabric stuffed with old bean bag beans but I believe you can also buy these commercially.
I also use light-weight metal cutlery. In general, the less metal cutlery is sold for the lighter it is, so look for your cutlery at junk shops! I find my light-weight cutlery so much easier to use than regular cutlery that I carry a set of it in my handbag for use when I'm out and about.
I now have a master packing list for going away on holiday, a list of the preparations I need to make before my husband goes away on a respite break, a list of what I need if I'm going to be left alone on a day when I'm not strong enough to walk and so on. These greatly reduce my stress as I approach these complicated, unfamiliar situations.
I find these phones so useful that we have begun to take them with us whenever we go away. I'm quite clumsy and often drop them but we still find a pair generally lasts around 3 years. A new pair costs well under $100 on TradeMe.
I hope that you will have found some technologies here that will enable you, also, to live a more satisfying life with your limited reserves of energy!
Arohanui,
Heather
April 2014