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Any tips on supporting apartner whose mobility has decreased ?

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User
Posted 28 Jul 2014 at 14:08

Neil is currently very unsteady on his feet, combination of chemo, and RT to shrink spinal tumours. It is just awful for him, even more restrictive than before and scary. We have got a light wheelchair coming tomorrow for hospital appointments, theirs seem to be these huge tank like things and I need something light I can lift in and out of the van for him. Feels awful going this and I just hope his mobility improves. This has happened very quickly and I thought I would pick the brains of other partners, wives as to how they have coped in terms of practical and emotional support for their OH? I will be relieved when we see the palliative care team, hope some of this can be taken off my shoulders but in the meantime have to plan for these times. Any tips greatly appreciated !!

 

Regards, Fiona.

User
Posted 28 Jul 2014 at 23:20
Hi Fiona, I am sorry you are having to ask, but from my experience I would say be as prepared as you can, in case you need to be.

As you say changes can happen very quickly and it isn't always possible to get equipment in place quickly. I kept a wheelchair in the car for a while before Mike regularly needed it. He hated it but as you know it is always evening or weekend when you need to get to hospital or wherever, and there's never a wheelchair there when you need it. I persuaded Mike to get his to make me feel happier. I understand you need a light wheelchair but is it comfortable enough when Neil is in pain? I got an extra purpose made cushion for Mike.

I also got a raised toilet seat, which he wouldn't use, but at least it was there in case. Urine bottles, which he had to use in the night as he couldn't get to the bathroom in time? Walking sticks, a few pairs, one pair left upstairs, one downstairs, one pair in the car. We had grab rails fitted in the bathroom (several) and coming into and out of the house and a second handrail up the staircase. Really we made it so he had something to grab hold of and pull himself around the house. We got a 'grabber', to pick things up from the floor as he couldn't bend down.

I read the mobility aids books from cover to cover for ideas to make life easier for him, and give him some independence. We also changed the car for an automatic although he really only drove it for three weeks, and I debate whether he should really have done that.

I would ask for an occupational therapist assessment, also have you a Macmillan nurse to ask for advice from? For emotional and practical advice the nurses helpline here is really good.

It is a difficult and emotional time, please try to take all the help you can, love Janet

User
Posted 28 Jul 2014 at 17:35
Fiona,

Sorry I can't be of much help to you, but we bought a wheelchair for when my sister comes to visit and we have used it ourselves a few times, [for when my WIFE has been poorly !], including our latest Leicester do, it will be frustrating for him that he can't do what he would like to do, it is something that we all have to get used to, unfortunately, the mind is willing but the body says NO, so just be there to help and comfort him as and when he needs it. Barry (topgun) has a Mobility Scooter !

Best wishes,

Chris. xxxx

User
Posted 29 Jul 2014 at 21:20
Fiona I totally endorse all that Janet has said, a lot to be said for having things handy just in case. I fitted a special handle in the shower for Mick to hold to keep steady. It came from betterware and cost about ten pounds. It fits direct onto the tiles, no driling just very strong suction pads. I literally tried to pull it off the wall and could not. The walking sticks were a must have, part of the problem waas that Mick could lose his balance or one leg would just give way. The folding wheelchair went everywhere with us as he often started out on his feet but just could not manage the long corridors in the hospital. If I had to go out I used to have everything he needed within reach of his chair and all critical numbers pre set on his mobile phone. Neil might not like it but the wheelchair is the safest way for him to get around. One fall could cause irreperable damage from an SCC.

Thinking of you

xx

Mo

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User
Posted 28 Jul 2014 at 17:35
Fiona,

Sorry I can't be of much help to you, but we bought a wheelchair for when my sister comes to visit and we have used it ourselves a few times, [for when my WIFE has been poorly !], including our latest Leicester do, it will be frustrating for him that he can't do what he would like to do, it is something that we all have to get used to, unfortunately, the mind is willing but the body says NO, so just be there to help and comfort him as and when he needs it. Barry (topgun) has a Mobility Scooter !

Best wishes,

Chris. xxxx

User
Posted 28 Jul 2014 at 23:20
Hi Fiona, I am sorry you are having to ask, but from my experience I would say be as prepared as you can, in case you need to be.

As you say changes can happen very quickly and it isn't always possible to get equipment in place quickly. I kept a wheelchair in the car for a while before Mike regularly needed it. He hated it but as you know it is always evening or weekend when you need to get to hospital or wherever, and there's never a wheelchair there when you need it. I persuaded Mike to get his to make me feel happier. I understand you need a light wheelchair but is it comfortable enough when Neil is in pain? I got an extra purpose made cushion for Mike.

I also got a raised toilet seat, which he wouldn't use, but at least it was there in case. Urine bottles, which he had to use in the night as he couldn't get to the bathroom in time? Walking sticks, a few pairs, one pair left upstairs, one downstairs, one pair in the car. We had grab rails fitted in the bathroom (several) and coming into and out of the house and a second handrail up the staircase. Really we made it so he had something to grab hold of and pull himself around the house. We got a 'grabber', to pick things up from the floor as he couldn't bend down.

I read the mobility aids books from cover to cover for ideas to make life easier for him, and give him some independence. We also changed the car for an automatic although he really only drove it for three weeks, and I debate whether he should really have done that.

I would ask for an occupational therapist assessment, also have you a Macmillan nurse to ask for advice from? For emotional and practical advice the nurses helpline here is really good.

It is a difficult and emotional time, please try to take all the help you can, love Janet

User
Posted 29 Jul 2014 at 12:00

Thanks Chris and Janet,

 

As you say, best to be prepared. We are getting a light, foldable wheelchair today, the ones at the oncology centre are like tanks, awful to manouvre and I must admit, using them yesterday and today for Neil left me quite bad tempered and wondering what's to come and how much can I take. He is not the best of patients, can't blame him for that though, it must be awful and there is no guarantee how much of the difficulty walking will be sorted with the RT though the potential cord compression was caught early. Will raise all the mobility issues with Palliative Care Team. Some good news, I queried his chemo schedule as it was re-scheduled only three days after finishing RT. The onco agreed so we will have a respite from chemo for two weeks as Neil has his uteric stents changed next week and a CAT scan the end of next week.

Haha, I have told oncos no chemo on Fridays as it is playing havoc with my dog training lesson, one of my main outlets from all this so they have said they will try to get it back to Thursdays !!

 

Regards, Fiona.

User
Posted 29 Jul 2014 at 21:20
Fiona I totally endorse all that Janet has said, a lot to be said for having things handy just in case. I fitted a special handle in the shower for Mick to hold to keep steady. It came from betterware and cost about ten pounds. It fits direct onto the tiles, no driling just very strong suction pads. I literally tried to pull it off the wall and could not. The walking sticks were a must have, part of the problem waas that Mick could lose his balance or one leg would just give way. The folding wheelchair went everywhere with us as he often started out on his feet but just could not manage the long corridors in the hospital. If I had to go out I used to have everything he needed within reach of his chair and all critical numbers pre set on his mobile phone. Neil might not like it but the wheelchair is the safest way for him to get around. One fall could cause irreperable damage from an SCC.

Thinking of you

xx

Mo

 
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