Hoping for advice on disability aids

All about caring
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Hi everyone,

This seems like such a friendly helpful forum, and as we are quite new to all this I thought I’d ask for any advice please

I have 2 questions, but will post on separate threads. My dad’s health has got rapidly worse over the last 12 months. He’s gone from pushing my mum in her wheelchair to now sometimes not being even able to stand. He has Parkinson’s, recently diagnosed normal pressure hydrocephalus, also has COPD, asthma and bronciectasis (so frequent chest infections which pretty much immobilise him), dementia plus some other issues.

As of the last month, he can often not get to the bathroom with his Zimmer, and sometimes cannot even stand . He’s recently been given a hospital bed in the living room.

But the physio and OT are hard work, they only seem to provide any equipment when I’ve looked online myself to solve an issue and found a suitable solution and asked them about it. Or when the carers suggest things.

Currently we have an Etac, commode on wheels, shower seat , raised toilet seats, and soon will have a Wendylett - only because a carer told us about it and asked the OT for one.

The problem is I don’t know what I don’t know, so cannot ask for an item if I don’t know such a thing exists. Multiple times now I’ve asked the physio and OT is there’s any other equipment which may help us, and they just say no. But then I accidentally find out something exists, I ask them, and they provide it. It’s very frustrating.

So, for someone with my dad’s mobility issues, who needs to get from chair to hospital bed, and ideally on better days to the toilet or shower, are there any other useful gadgets that it may be worth my looking into?

Many thanks everyone.

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hi @lancslass ,There are things but it depends on how big the house/ room is as some things are quite big. The commode chair is the best thing to have and use from getting from one place to the other or a wheel chair. I would get a tape measure and measure everything the space of the chair , the door, hall. etc and say what can he use to get from one place to another but say your dad is not able to stand and he keeps saying he is going to fall. they are suppose to help you but sometime you need to keep poking the bear with the stick. If they don’t listern get the gp or someone to do a mdelical check on him at home to get them to say he needs something else or something needs to be change. There are a lot of things out there but don’t go spending money for things unless it needed as you will be wasting money. I use the commode chair to get dad around the house as he can’t stand to long with the zimmer.

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Hi Lancslass

Here’s a few things I’ve used for when we were looking after Dad (you can get all this VAT free just make sure you sign the chronic ilness form on the ability superstore - I don’t think amazon do that):

Urinal bottle - so he doesn’t need to get fully out of bed but sit up or on the side at night: Male Urinal Bottle with Cap – Ability Superstore

Given its winter and can get cold an overblanket that heats is handy - I just got this for my Mum because she can’t get warm easily: Amazon.co.uk

I’m assuming you’ve bed pads for accidents in bed/elsewhere - I used to make layers of sheets, pads to strip the bed easily: Search: 69 results found for "bed pads" – Ability Superstore

I recommend getting a babymonitor - i know it sounds awful but knowing you can check on him whilst you’re in another room, or semi-sleeping can help

Bed socks with rubber on the sole to give extra grip if you’re in the bathroom but slippers are great stabilisers

V Shaped pillows to prop him up in bed or neck pillows can be helpful Pillows – Ability Superstore

Something as simple as a whistle on a string can be a useful alert system.

As he suffers from dementia I highly recommend curating a playlist of his old favourite music and songs - it’s calming and comforting - to play it to ease him into sleep or during the day in general.

Does he get breathless often? I’m assuming you’ve oxygen tanks? We had them organised and the O2 offered the extra burst than helped my Dad. I hope they’ve organised that for you.

I hope that helps

BIG hug!

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Hi @lancslass My husband, Graham, suffered a stroke four years ago. Since then he’s gone downhill.

At first we had no idea what might be available but have gradually learned - push, nag, “poke the bear” til you get the help that’s needed.

One lovely Physio visited and found G really struggled to get out of a chair. She said ‘I’ve seen something which might be of help’ and came back with an odd looking frame. It’s known as a “Sit/Stand Frame” and not many people have seen or heard of them. It is a frame which slides under that chair and has arms at about 45 degree angle, When about to sit, Graham takes hold of the arms and can then control his descent onto the chair instead of falling backwards. Likewise to stand he grabs hold and can pull himself into a standing posiiton and then stabilise himself before reaching for his wheeled walker. It has revolutionised him sitting and standing.

He also wears “hospital socks” which have rubber dots on the soles, even though he wears some really comfortable Sketchers sandals at all times. They provide extra non-slip as well as being nice and warm (he has peripheral neuropathy and bad circulation so feet get cold.

I also have a heated throw for him which is amazing at warming him if he gets cold. A simple electric blanket in effect but nice and soft and moulds round him. I love using that as well !!

As @Victoria_1806 suggested, he needs neck support so I am now using V-pillows to provide additional support and they can often be repositioned to the ‘right spot’.

Hope this is a bit of help to you. Keep asking questions as there is a world of experience and knowledge on here.

Oh - with regard to bedpads. I invested in some washable ones and layer those with the sheets. It saves the mattress, even though I also have (non-crinkle) waterproof mattress covers and work out a lot cheaper than disposable ones all the times, but I do top up with disposable ones sometimes. I hope you have input from Bladder and Bowel Team - if not request a referral from the GP as they will supply personal pads, but not usually the bed pads etc.

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First of all, sorry for taking to long to reply. There has been a lot going on. I do really appreciate the replies.

@Michael_1910123 we have a regular stream of people visiting the house for dad - district nurses, recently Rapid Response again, on call doctors. We have mentioned how useless the OT and physio seem to be to most people that visit the house as we are so fed up, but nobody seems to have an answer to help. The physio and OT came again this week to show us how to use the new Wendy Lett. Yet again I asked if they can suggest anything else to make things easier for my parents, but no, nothing. It’s so frustrating.

@Victoria_1806 thanks for all of your suggestions. Dad already has some urine bottles, as it’s at the point now he cannot get to the toilet to empty his catheter bag so these are used regularly. We also have a wide range of disposable bed beds, pull up pants, pant liners, inner liners, all of which get used at different times depending on what is going on.

Baby monitor doesn’t sound awful at all, I can understand why you suggest it. I have said similar to my mum - well, getting web cam so she can keep an eye when leaving the room - she daren’t leave him for more than 10 minutes so it’s very difficult, especially when mum is disabled and very ill herself. But she didn’t like the idea, understandably. I will definitely try bringing it up again, but not sure she’s quite ready to do that just yet.

I’ll look into some alternative pillows thank you, that is not something I had thought of.

Dad doesn’t get at all breathless - despite all his issues, it is surprising! But he is constantly having a chesty cough and coughing up phlegm. He doesn’t have oxygen - although I did buy him an oxygen generator machine during Covid just in case. It was never used back then, but he’s used it a handful of times this last year.

@Chris_22081 sorry to hear about your husband, it must be so hard for you. thank you for taking the time to reply. You’re so right about having to push yourself forward and be persistent. I really don’t know how people who are on their own with no one to advocate for them, possibly manage. I will take a look into the type of frame you’ve suggested, so thank you. Dad has built up a whole drawer of ‘hospital socks’ from his various visits the last year! They do come in handy sometimes.

Dad was referred to the bladder team earlier this year, but they could only offer what were some awful thin inferior pads, so they have continued to buy their own which are much more effective.

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@lancslass You’re welcome. Yep that phlegm from the COPD can sit at the bottom of lungs so propping him up with pillows could help him get off to sleep more easily.

It was difficult for us to use cameras at the start too, but the ones with motion sensors are good and knowing you can just press a button to see them can help your mum adjust maybe.

hugs and best wishes