Offloading again.

[JCRy]

OK, so I know I am some kind of superwoman, but I am feeling a little concerned about Ian's present stage of deterioration. I don't think I'm looking for advice, though any words of wisdom are always welcome.

I have been looking at the possibility of buying a Sara Stedy, as Ian can no longer walk with the walker. But even in the few days I have been hunting them and pricing them, his legs have become even weaker. It has taken us 50 minutes to get from his riser armchair to the commode and into bed this evening. His legs are struggling to take his weight and he starts to shake and gets dizzy. We have had this in the past but not to such a degree.

Should I press on with the Sara Stedy or can you suggest something better? I'm honestly not sure where we go from here. He is now anxious about leaving the house and I need to find ways of not going stir crazy! I'm pretty resourceful, so not a big issue.

My poor darling hates being a problem and needs lots of building up after a difficult day. Fortunately, he is the easiest person to encourage, as his heart is so valiant!

And so we muddle along. This new stage is definitely more challenging. It's so good to know so many of you have been through it and survived in good grace.

Much love to you all and thanks for being there,

Juliet x

[NannaB]

My husband didn’t have a Sarah Steady but did have something similar. One day, suddenly, he could no longer weight bare when I was transferring him and I had terrible trouble getting him from the equipment to the bed and had to physically yank him onto the bed. He was then bedridden until a hoist was delivered as there were delivery problems.

I expect you know there are several different hoists. We had one on wheels which suited me but others can be fitted to the ceiling. If his legs are already weak, I would ask the occupational therapist for advice and get a hoist before it gets to the point when you can’t move him.

Best wishes.

XxxX

[JCRy in reply to NannaB]

Thanks, NannaB.

Ian's carer is off to see the nurse on Ian's behalf this morning. My Spanish isn't up to explaining it properly! The system here is so different, as explained to Marion below. Hopefully we can get something sorted. I will let you all know when we have some kind of resolution....no doubt with a few funny stories along the way!

Much love

Juliet x

[AliBee1 in reply to JCRy]

Hiya Juliet. Good to hear from you but sorry to hear that things are deteriorating. I am glad that Ian's carer is going to see the nurse on your behalf. Do they have an OTs out there that you can access. Like Nanna B said there are lots of hoists. Nigel had one on wheels which worked very well and because of the way the hoist was designed he could be lowered onto the commode without having to get out of it. My friend's husband however has a hoist attached to the ceiling. I hope that you will be able to find something. In the meantime big hug love. AliBee xx

[JCRy in reply to AliBee1]

Thank you. Hugs back!x

[Dadshelper]

Another other option is a wheelchair. You'll need to figure out a way to transfer him from recliner to wheelchair to toilet etc. When dad stopped walking he moved to a wheelchair and it became a lot of lifting on my part to accomplish the transfers.

Ron

[Nanny857]

Hi Juliet, sorry I can't provide any solution as W was able to stand and shuffle along with support from me to get to wheelchair etc right up to he got a chest infection. But I just wanted to let you know I am thinking of you and hope your Physiotherapist/Occupational Therapist can help in some way.

God bless,

Lots of love, Marion xx

[JCRy in reply to Nanny857]

Occupational Therapists are not available here in the backwaters of southern Spain! The only way I can get any kind of advice from a physiotherapist is by enrolling Ian in a day centre half an hour away which he refuses to go to because his anxiety level would go through the roof! I can talk to my GP who is lovely and may be able to sort out something. Here, once a patient's condition is regarded as acute, social services seem to take over any therapies at the day centres. We are caught right in the middle.

I will find a way through....I always do!

Thanks for your support.

Much love

Juliet x

[LuisRodicioRodicio in reply to JCRy]

Hi Juliet!

In which locality and province are you?

Hug.

Luis

[JCRy in reply to LuisRodicioRodicio]

Sadly, miles away from you! We are in Almeria province, 20 minutes away from Huercal Overa, inland. Outside a small mountain village of Taberno.

[Tippyleaf]

Hi Juliet

Don’t believe you are off loading - simply sharing a dilemma- we all learn from each other here!!

My only suggestion would be an urgent occupational therapist review

Love and hugs

Tippy

[JCRy in reply to Tippyleaf]

See above!xx

[Willow_rob]

A hoist, powered wheelchair and a wheelchair accessible vehicle and a shower commode will give him the most options for the future. Eventually you will need a hospital bed and ceiling hoist. Hope for the best but prepare for the worst and remember your health is important and a bad back will render you unable to help him

[JCRy in reply to Willow_rob]

Half way there! The shower commode is fantastic and have been using one for nearly a year. Daren't get a powered wheelchair...Ian is too shaky.

A hoist may be sorted through Social Services here....so pending.

A vehicle would be fantastic, but we can't afford one and in Spain they are not available.

We have an adjustable bed, though. Not officially a hospital bed, but it has been a great help.

Thanks for your constructive recommendations. I love this site!

Much love

Juliet x

[Heady]

You have got loads of advise, so I will just give you a great big cyber hug instead, 'cause it sounds as if you need one!

Sending very big ((((hug)))) and much love

Lots of love

Anne

[kenh1]

Like NannaB we had a hoist on wheels we also had a specialised wheelchair which was moulded to the shape of her body.

But as the disease progressed she became completely bed ridden and the devices became obsolete.

[Railfan]

A hoist might be your best option. With a Sara Steady the patient has to be able to stand and weight bear on their own.

[Katiebow]

Sounds like a hoist might be the answer, I made sure I had one fitted well before Ben actually needed one (it was pressure fitted to ceiling/floor with a sliding rail to carry him from bed to chair/commode) but it was reassuring to know it was there. I didn't have the problem that Bev had waiting for one to be fitted, leaving poor Colin bed bound for a few weeks. It was her experience that made me press for it. Luckily Ben was able to use the rolator until a couple of months before he died but if he had a bad day we did use the hoist. It's tough getting through the day sometimes isn't it but somehow you pull out all the stops and get fine what needs to be done. Sending you a big hug and pat on the back, think you need one.

Love Kate xxx

[Red1990]

I have no advice, but love your spirit and attitude. Hugs!

[doglington]

Nothing to add but sending my love and a big hug Juliet.

Chris was able to move with my help and then all went wrong and he was bedbound after hospital. Such is PSP

Good luck in sorting things out as you always do !

love from Jean xxx

[JCRy in reply to doglington]

Thanks, Jean. We are all some kind of wonderful, aren't we!

Much love and hugs, Juliet.xx

[doyle1028]

I would recommend the lift we have, the battery operated Sara Flex!

[Karynleitner]

We had a device similar to a Sera . It worked great for about a year. Due to his rigidity, he was still able to stand with it. Our problem came when his back beame too rigid to sit on the bed to stand. We also had a couple limes when he decided to bend his legs and was hanging from his armpits. Scary.

If you have the funds to purchase one to use as long as possible, they work great. Just know with disease progression , it may not be long. We also used it to help him stand a bit to exercise his muscles. I think he liked the feel of standing .