Hoist transfer onto commode

[Purpletunes]

Hi all, sorry if this is in the wrong place. I look after my mother who was diagnosed with MND last May.

So far we've used an able assist to transfer her from bed/commode/recliner. But lately her strength in her legs have gone. I'm seeking practical advice about getting her on and off the commode via a manual hoist. She is short 4 ft 6 but obese. I've managed to get her on the commode this morning but am unable to remove the bucket to clean her as her weight sinks into the bucket? Previously she could stand so I could clean her before getting her seated or into bed.

Any advise would be super helpful.

Many thanks

[MMG]

I would suggest that you need yo speak to an occupational therapist urgently as this is their area of expertise. They should assess the home environment and recommend (and provide) the most practical and safe option.

There may be alternatives which could work better. They were certainly very helpful to us and provided different equipment throughout the journey and instigated provision either through the health funded route or via council.

Your issues are part of routine daily living so are essential to getting resolved as soon as possible.

You should be part of a multi disciplinary team approach and theoretically any professional should be able to contact an OT on your behalf.

Hope this helps.

[Ellie]

Purpletunes A warm welcome to the forum, sorry you've had to join us.

As MMG said, your mum's OT should really be involved in any manual handling and equipment needs but maybe they were, provided the commode and hoist, then ran for the hills...

The seat of the commode shouldn't impinge on removing the pot: is the seat mesh, is it a bariatric commode?

Are you doing the manual handling on your own?

Love Ellie xx

[Purpletunes]

Many thanks for your responses. I think I just panicked this morning. As much as you prepare for the deterioration you don't appreciate the difficulty and practical challenges until they happen.

It's an adaptable shower commode. Our OT gave us hoist training but I was the test subject so we obviously didn't cover how to remove clothes/underwear and didn't think to ask at the time. Thu-Sat I'm on my own. But Sun-Wed I have my sister.

We have carers come in the morning to get her ready. They were late today. But showed me how to get the bucket out, my mum needs to help by leaning forwards a bit. Then I can clean her properly. I think with time I can get used to getting her into position, but today being the first day we did have a spillage.

She's thankfully not incontinent. I saw on some posts that people forgo underwear for easy transfer, which is what I've gone with and is most practical for her. I would like to keep her as comfortable as possible. I've put one of those protective disposable sheets on the recliner with her in the sling. The carers recommended getting her the pants from the bladder services, she doesn't seem keen and I don't know how easy they'd be to remove either?

Also it would be good to know how much the community provide and how much we have to purchase ourselves?

[Ellie]

Also it would be good to know how much the community provide and how much we have to purchase ourselves?

You 'shouldn't' have to buy any equipment - equipment being things like a hoist, sling, commode, wheelchair, rise recline armchair, hospital bed, pressure relief products including a comfortable mattress, NIV & accessories, suction machine, cough assist machine, nebuliser, communication devices up to eye gaze (not the complete list)

Then there's the likes of orthotics/braces for feet, lower limb, hand, wrist and neck. Incontinence products can be hit and miss; actually, any piece of equipment can be hit and miss 😟

If your mum ever has to buy equipment, it's worth contacting the MNDA for a grant contribution or the provision/loan of an item. xx

[Purpletunes]

Thank you Ellie and MMG. You've both been super helpful. The equipment has all been prescribed or loaned. The issue has always been getting the right professional to make the request and the calls to get things initiated in between caring for my mum. I think I'll call the palliative care team on Monday to confirm if there's any further support/advise they can provide with her symptom change.

Thank you soo much again. It's reassuring to know there's so many supportive members on the forum.

All the best

[RP0521]

Thank you all for sharing your experiences and options available.It has been more than a month since having been visited by the OT and my desperate request for a hoist appears to have been ignored. By pure coincidence the OT called while I was online and again my request for a hoist appears to have been put aside despite me having informed the OT I'm having to be lifted onto the comode by the current male carer.

[Purpletunes]

Sorry to hear that RP0521. We realised early on that equipment would take ages to arrive. It was only by chance that a suction device, that was outstock, was delivered because we had a call regarding arranging a delivery for something else.

With this condition we've really had to forsee the changes we'll face and request the equipment in advance. The difficulty has been knowing what's available.

I sincerely hope you get your hoist soon.

[RP0521]

As you rightly wrote "we've really had to forsee the changes we'll face".

My frustration is that why are the so called specialists not planning ahead for for our progressive condition.

[shelly21]

I must admit I am in the same position. My OT hasn't been in my home since February. She offered nothing and I had to ask. Now she has left. I had two bad falls in 1 week. I asked re hoist and I'm on waiting list for assessment.

I think Ellie we know we should all be treated equally but we are not sadly.

[Purpletunes]

Hi shelly21, my mum was also diagnosed with bulbar onset MND. She was using a walking frame for support up until June this year.

When she had her RIG feeding tube we were seen by all the relevant departments (SALT, Respiratory OT, Dietitian etc) and they referred us back to the community. It was then after maybe 6 falls/trips we received a mangar raiser lift (if I'd known about it earlier it would have made some of those falls a lot easier to deal with).

The not knowing what equipment/aids are available is the most frustrating. Everytime we communicate with an OT, as well as addressing the here and now, I also ask about future needs, to only get fobbed off that she'll be assessed as her needs change. What I try to reaffirm is as a carer you adapt to the changes as they happen. Plus if you live with your loved one, it's very difficult to see the slight changes, as you have no distance from the situation.

I've read as many of the guides/handbooks on the MND website. Sometimes I think the information aimed at professionals is easier to absorb. It's straight to the point and at least let's you know what they're advised to do. They should predict prescribe equipment so it's in place when needed.

It was our neurologist who told us about the Able Assist/Sara Stedy. We didn't realise there was a difference until the carers started. Get a Sara Stedy, the legs can be adjusted, we cancelled the Sara Stedy order as they delivered 2 able assist and described it as the same thing, not mentioning the legs could be moved 🤦🏽♀️

Our neurologist has been amazing at writing to the GP, so we have letters advising what mum needs. From there we've been able to chase GP to refer us back to OT.

Like many I neither have the time nor patience for the bureaucracy and I switch off as soon as I realise someone isn't going to be able to help us. As at this stage it really is a waste of time and energy we no longer have.

[Ellie]

Purpletunes Your post will resonate with a lot of forum members.

Just a thought: is your mum linked in with her local hospice? They're often good for kicking butts. xx

[Purpletunes]

Hi Ellie, yes she is.

When my mum was diagnosed last May, her neurologist unfortunately had to take long term leave. We weren't assigned another neurologist until her respiratory consultant realised that was the case. Then we went from having no neurologist to two, one at our local hospital and another who's more specialised at Charing Cross Hospital. She has been amazing. After our first appointment she referred us to everyone.

A palliative care nurse saw my mum end of Jan/Feb this year but then she was considered stable. At that stage she was walking with a frame, eating pureed food but speech had gone.

We had another palliative care nurse visit at the end of July who was great. She recognised that my sister and I needed help as carers and really insisted we think about getting carers. We've now have them once a day in the morning. My mum didn't like the one's who came on the weekend, so we've cancelled them for the time being. They were always late and it impacted our feed schedule.

Unfortunately when I called the hospice yesterday our assigned nurse was away, so another person came. The best he could suggest was getting a bed pan for quick use. A quick YouTube guide on that and it's not going to work. My mum can't control her trunk anymore, so I'm not sure what use a bed pan will be 🤷🏾♀️- unless anyone has any tips. Toileting is my number one subject at the moment 😂

I've messaged the OT to ask for a different commode bucket, for some reason it has a half cm rim, which catches urine and you've guessed it spills when you pull or move the bucket 🤷🏾♀️🤷🏾♀️🤷🏾♀️. Now we're hoisting it's difficult to get her into position. Even the carers said they should provide a different commode.

Our palliative care nurse should call us next week. She's one of the few people involved in my mum's care that I like. A person who follows through and tells it to us straight.

The neurologist suggested we should apply for continuing care, I'm not too sure what that involves, or how it helps, again I'll wait for the palliative care nurse as I recall them saying they can do the application.

We always acknowledged and appreciated since my mum was diagnosed that this would be challenging, to say the least, I have every sympathy for each and every one of you who are experiencing it or taking care of loved one.

[Ellie]

The neurologist suggested we should apply for continuing care, I'm not too sure what that involves, or how it helps, again I'll wait for the palliative care nurse as I recall them saying they can do the application.

CHC, which is NHS funded care, can be a game changer, so it's definitely something which should be applied for, and should be on your agenda for the meeting with your mum's palliative care nurse. The application process is rather involved, so having support with the application is a real bonus. xx

[RP0521]

Purpletunes

Its been almost a year since the local authority care "brokerage" team found local care agencies who assessed my condition the supplied carers. Some carers have been wonderful and helpful while others have been the complete opposite arriving late and on a number of occasions to arriving at all.

Months ago I was advised by a very helpful social worker to apply for direct payment. I now wish I had explored applied for and progressed this options months ago to find a personal assistant/carer.

Please look into direct payment as soon as possible.