What Next?

V has  lost all her mobility  and  now is  losing  her weight bearing ability .We can just about manage  bed to  chair  , chair to  wheelchair  etc  using our return stand  ( sometimes  with belt ) . Yesterday  we were out  and she  needed the  lavatory  and we  made it into a decent sized  disabled loo . It was then I realised that since our last  visit only  a few weeks  ago  I simply would  not be  able to transfer her  from  chair to lavatory  and  back again  by myself . Fortunately my daughter was  with me   and she  came to the  rescue  and we just about managed it  between us .Does this  now mean we can only  go out  double  handed ? Do I accost people in the  street  and ask  for their help(probably not going to  work  that one ! )Any  suggestions  would  be  welcome . V's answer  was that we should  take the  return stand with us  where ever we  went ,bless her . I had this  vision of walking down the  main shopping  street in Exeter  pushing  V in her  wheel chair  and towing the  return stand  behind  me . For those who have  yet to come  across one  it consists of  a weighted  circular  foot plate  with an upright handle  which is  about 4 feet tall - rather  like  a  sack trolley .

I really  can't  see a solution - perhaps  we are into the  next  phase   and our  trips out together are going to be  a thing of the  past .Although  V has  quite  severe  cognitive problems  putting her in what I call botty blotters  isn't  going to work  as she flatly  refuses  to wear them except  at night. So ............? Help

18 Replies

  • We're slowly getting to that stage here too, trying to think ahead even though that is thoroughly depressing. So yes, the 'blotty blotters' (and have been trying to talk my dad into it, not successfully yet, because he gets up too much at night to use the loo and he could do with a good night's sleep)... It's a fragile balance trying to decide: no more outings but still being able to use the loo, or "putting up with it" and still going out there... Not easy. In my dad's case, we've not been on outings for a while because of the bad weather, but it's my birthday next week and he's been talking about going for a meal (he loves tiramisu), so we'll do all the preparations and DO IT! Because you never know when it won't be possible anymore. I wish you good luck with finding a solution - often it's about giving up little by little of what you had, but I do believe in silver linings whatever the situation. 

    Lieve xx

  • George nice to hear from you, you always make me smile.  My George has a catheter, can woman have them fitted as well? I am sure Tim said his wife a one.  Sorry can't be any more help.  Yvonne xxxx

  • Most who are wheelchair bound do not have the ability to transfer therefore everything is based for the needs of the wheelchair.  A wheelchair accessible van so that she is able to be in front seat with and in her wheelchair.....there's a ramp on which she and her wheelchair exit and enter.  As far as the bathroom, holding it is not a possibility; two person assist may not always be a possibility, so catheter with a private yet mobile bag.  You sound like a couple who love to go out, maybe scheduling events when you do have an extra set of hands......It limits the spontaneity but still allows for some freedom from the house...

    We are not there yet. But when we are I will be asking the same questions.

    good luck,


  • Hello George,

    We resorted to the pull up pants a few months ago after a couple of accidents.They are reliable and much nicer than the pads.They do not make it difficult for  Des to go to the loo and if we can't get there no problem. Just another way this ****** PSP  demoralises the victim.

    We have an East Devon calender in the kitchen so we have been sharing the  Exe valley with you in March.My parents retired to Beer so every month is a familiar picture.Lovely.

    If you do use the Pullups  you will find if needs be they rip at the sides which sometimes is less messy than pulling them down. Took me a while to find this out so am passing it on.I get the Depends pullups(other makes are available)as they say.

    Good luck sure V will be pleasantly surprised with the pullups!

    Happy Easter, Pauline and Des

  • Already have the  car with wheelchair ramp  etc . it's the  WC bit that is the problem .

  • I understand.  In the US there are VERY FEW bathrooms which allow for both sexes to go in ie Family WCs.  B needs help standing.  Most men have an obvious problem with me standing behind them at the latrine! Not much better if we go in the women's room.  Pad,

    catheter, or plain old waiting...which probably won't be an option.

    Good luck


  • I have every sympathy George.  We are at very much the same stage regarding the mobility - D has almost none.  It takes two (and sometimes three) to transfer from wheelchair to chair, wheelchair to bed etc. and if I am on my own I have to use the standing hoist.  This is just about OK but he is losing the ability to take the weight through his feet and to hold on to the 'handlebars'.  We gave up trying to get him in the normal car seat a few months ago when we got the WAV and he now rides in the back in the wheelchair.  He hates it but I have to tell him it's that or we can't go out!

    Luckily we don't have the toilet issues you have as D wears a convene day and night.  This is very successful and has made a huge difference both practically and confidence-wise.  It is a pity there cannot be a similar system for ladies.  Perhaps you could persuade V into the 'bottom blotters' (lovely description!) just for outings if that means you can continue to go on jaunts (probably the wrong word as I expect there is nothing very jaunty about your outings if they are anything like ours!).

    It's one of the worst things about dealing with this disease - just when you think you have got a way to deal with the problems, the problems change and you feel out of control again.  It is so hard when you realise you can't continue the things you've always done.

    Hope you both have a lovely and peaceful Easter Sunday.

    Vicki x

  • Mum and I never got the hang of that turn table thing you describe. We used to do a little dance. It was a bit like a penguin shuffle. We would transfer weight from one foot to the other whilst facing each other. I would support her around her waist and she would hold my arms. This way we would gradually turn her into position. She could only turn clock-wise.

    We lived near Newcastle and I discovered that the Baltic Art Gallery had wonderful disabled loo facilities, including a full hoist and wet room shower. Leisure centres also tend to have excellent spacious, well equipped (and under-used) loos. We did use pads in the final months, just in case, but I always reckoned on getting mum to a loo every 90 minutes and I always knew exactly where that loo would be, before we left the house. 

    I seriously hope you both continue to get out and about. We would all be poorer if we had to forgo your heart warming reports.

  • Hello Georgepa

    Don'tcha just luv it when that happens. Any trips out anywhere for us these days are governed by Elizabeth's last bowel movement. If she hasn't had one in the previous 24hrs, we're not going.  The exception to this rule is when the trip is to the hospice every Monday & Friday - it's only a 10 minute drive away, but it's pedal to the metal if she's constipated. On arrival I tip the staff off that she's due a movement just to give them a fighting chance of avoiding an 'accident'. (Oh deep deeeeeep joy)

    I've been feeding Elizabeth for about 18 months now and over this time her ability to swallow has decreased.  Even though I puree the meat & veg, feeding her is now taking 2+ hours with a few trips to the microwave - and even then I'm scraping half of it into the bin.  She has flatly refused to have a peg fitted when Speech & Language and other professionals have suggested it and I've always supported her in that decision. However I reached the end of my rope on Friday. I told her I was sorry to put her in this position, but if she did not have a peg fitted I'd be looking into long term residential care for her.  The local care home we use for respite occassionally is excellent.  Elizabeth mulled it over and then agreed to the peg.  So as soon as this holiday's over I'll sort it and thank heavens for that, it was driving me mad and angry.

    Anyway, hugs 'n' all

    Chris F.

  • Stop struggling before you really hurt yourself .  When John got to that stage I tried the stand turn and the wheeled hoist but found it far to leave for me . It also take up a lot of room .  I did use it for a whirl left stationary , I would get John into wheelchair and wheel to the hoist then hoist him to change from wheelchair to commode. Then do the reverse when finished .

    The bes t thing I did was have the mobile spceioing hoist fitted . It's brilliant . One over the armchair the other over his bed ,  

  • Should be mobile ceiling hoist ..

    If you have th room u could them at least hoist onto wheelie commode and when it over the toilet .  I can't do this I haven't to space to get through the doors and turn into toilet ,

    John also does not go out anymore. 

  • At least it would take the pressure off you while at home . If you can persuade to use the pull ups would enable to keep getting out together for longer ..  I did have to lose some furniture to fit the hoist in .  

    A small price to pay to keep John with me at home 

  • Sorry to hear this. We are not at the mobility stage but have same toilet problems.

    Chris now uses the pull-up pants. He gets on all right now, although it was difficult for him to accept. He found it was less embarrassing using the pants, after some tricky, and messy episodes !!

    Hope you manage to work things out.

    Love, Jean x

  • When my husband had reached the stage that you are at, he was already incontinent and so wearing pads or pull-ups was a necessity.Perhaps if you were to coax V into having a trial of wearing pull-ups on your next outing, she may feel more willing to wear them and eventually get used to them, especially as it would mean that you could both Still go out together....there isn't really any other solution unfortunately, is there?

    Good luck with that one Georgepa...it's just another one of those problems that both carer and sufferer of these horrid diseases, eventually have to overcome until it is our new 'normal'


  • Hi GerorgePa,  I agree with the others!  S now has a Catether fitted, do no more urine problems and he is seriously bunged up.  We rarely go out now, just the supermarket or the doctors!  I think you just have to lay it on the line.  Either "Botty Blotters" or staying in!!!

    Excuse some typo errors, site really playing up today!,!

    Lots of love


  • I have "Travel Johns" in the car for my hubby, just in case.  They are a life saver.   Don't even have to stand. just aim and go. They do make a variety for women (e.g Disposable Urine Bag Super Absorbent Packs - Eazy Go by Everpine Inc.)  I found it  on Amazon.  

  • We are in the same situation as the rest of you. He wears depends with a liner in it. The VA has been kind enough to have them delivered to the door. The VA has also provided the catheter that he can wear, however, it leaks. I have not figured out how to get it to stay sealed after the first urination.  Any ideas on that one? 

    Our biggest problem is finding a family bathroom on the public outings, so that I can go in and help him. Our last outing/trip he ended up with 6 staples in is head. He no longer uses the walker. He is in the wheel chair full time. 

  • Try googling a urinal pressure pad . It didn't suite John but it might you 

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