1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Scary time on the stairs

Discussion in 'I have a partner with dementia' started by tre, Jul 1, 2015.

  1. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I have been anxious for some time about getting my husband up and down the stairs as he has severe dementia now, and the rare type means his vision is compromised such that he has been registered blind for the last three years.
    Since Christmas his mobility amongst other things has deteriorated markedly such that every ascent and descent is a worry. We only come down once and up once each day but my heart is in my mouth each time. He can start off fine and then freeze part way up or down and there is no way of telling whether it will all go fine or we will have a problem.
    I am on my own with him and have no family who can help in the area. David's closest son is 200 plus miles away and the other one is living abroad.
    On Monday evening taking him up to bed we had reached the top stair and I was just breathing a sigh of relief as I helped him onto the top landing when I realised he had somehow managed to put his left arm in the little triangle of space between the handrail and the horizontal divider on the top bannister. As usual, when there is a problem, he stiffens up, because he is anxious, and because of this I could not get his arm back out. We were right at the top of the stairs and I was terrified. I managed to get him on the top landing, with his arm still stuck, and quickly got the perching stool from the bedroom so then he was at the top of the stairs, with his arm still trapped, but at least sitting securely. I tried putting some cream on his arm to see if that would help but he was so tense it was no use.
    I thought the only way to release it was to get him up from the stool and to step back onto the top stair but he cannot see or follow instructions so this is a big ask of him and also involved moving him to a less secure position.
    I have to admit I had a little weep. Then having pulled myself together, whilst calling out to reassure David all the time, I phoned a local friend who luckily was at home and able to come around to assist. Between the two of us we managed to free David's arm.
    He was OK. I got him to bed and he went straight to sleep. I was shaking and unable to sleep for hours.
    The next morning he woke with a line of horrible looking bruises across his forearm. I feel awful about this. I suppose at least we survived to tell the tale.
    Some of you will know I was looking at putting in a through the floor lift so we can circumvent the problem of the stairs. I have confirmed the order today so we just need to hang on for another six to eight weeks.
    I have wound a scarf, padded out with the cut off sleeve of his fleece, which I removed trying to free his poor arm, in the triangle where it slipped through in the meantime so there is no longer a gap. At the time this happened I was transferring his left hand from the top of the rail that side to the horizontal rail on the top left hand side and guiding his feet up on to the top landing. He usually just hangs on to the right hand rail until I can take that hand and guide him forward. I had not noticed his hand had gone through the gap.
    I think this serves to illustrate to me that I always seem to leave it too late before I address a problem. I did see the stairs becoming a difficulty but I had not assessed that this little triangular gap could be a problem at all.

    Tre
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,540
    Female
    South coast
    What a fright. I bet you feel glad that you had started to arrange for a lift. At least you had started to get the ball rolling - me, it often takes a problem to occur before I start to think that I need to do something.
    At least he is OK. A few bruises will heal. xx
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,714
    Female
    London
    Hindsight is a fine thing. You didn't know the gap could become a problem. But you dealt with the crisis. That's all that matters. Don't beat yourself up about it.
     
  4. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Oh Tre how frightening for you both. I think no matter how much you try to avoid difficult situations there is always something to catch you out. I don't think that it's your fault that you didn't foresee this. Like Beate said please don't beat yourself up, life is really difficult enough!! Love, Es
    xxxxxxxxxxxxxxxxxxxxxxx
     
  5. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Tre, I feel awful for you. However, do take as much comfort as you can for making that phone call. I'm so glad someone popped over to help you out.

    Truly hope the lift will sort all those problems out.
     
  6. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,403
    Tre I've lived with the heart in the mouth feeling myself for years although not with stairs.please for both your sakes consider getting help, its not any less caring or giving in but 6 to8 weeks is a long time.

    I can understand the weep,but you sorted it. Well done you, you wonder where the strength to cope comes from don't you?
    Take care of you and David
     
  7. Feline

    Feline Registered User

    Oct 25, 2012
    164
    East Devon
    I think you deserve a pat on the back for dealing with the situation so calmly.
    I know exactly what you mean with addressing certain problems, you see it coming but think "we'll keep going as we are for a bit longer " and then crunch time comes and you think "why didn't I sort it sooner", some of us are just the same, take care and perhaps ask your friend if they wouldn't mind being "on call" then that will give you reassurance that help is around should you need it.
     
  8. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Well done for coping Tre - I remember the horrible dilemma of eventually having to leave Mum on the stairs so that I could get to the phone to get help when a "freezing" incident ended with her seeming completely unable to co-operate with being moved to a really safe position. I had broken her fall and lowered her onto the stairs but wasn't strong enough to lift her up the last couple.

    Hope the lift arrives soon as it really does sound as if you are having to put yourself in danger as you both negotiate the staircase.
     
  9. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Thank you for all your encouragement. I did not feel calm at all. Our friend was very kind and says he will always help if he can.
    I think it is very hard to work out whether a difficulty is something transient and will go back to normal or whether it is a real and permanent downturn. I have had to accept that these recent mobility issues are here to stay.
    I have been having problems getting him to swallow his tablets more often than I used to but I am reluctant to get the liquid prescription yet. I am a bit worried if he spits it out or clamps his mouth shut we will be in real difficulties.and in a worse position than we are now.
    Although his weight has now improved mealtimes are getting longer and longer generally taking one and a half to two hours to feed him when it was taking one to one and a half hours. He just chews each mouthful for ages before he eventually swallows it . He even chews smooth yoghurt and calpol and individual grains of rice. I have talked to the dietician about this but there seems to be no answer. I think even pureeing everything would not help.
    Tre
     
  10. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,403
    Tre you are not alone in deciding when things are changing for the worse. The only reason I preempt things now is because my husband was stuck for so long in denial mode that I was having to cope in an impossible situation. I hate to see others doing the same and putting themselves and carees at risk.

    I presume you have had a SALT assessment. If yes, does it need reviewing?
     
  11. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Yes we did have a SALT assessment. I fought to get a review and when we got it found it not very helpful.
    We are currently seeing a specialist Neurological Dietician every two months and it is with her help that we have managed to get his weight back up by one stone so that he is now just on the bottom percentile of where he should be.
    I think when she sends the next appointment I will give her a ring and ask her advise re a SALT reassessment as I think if we can get seen at the Neurological Hospital there is more chance of it being worthwhile.
    I am thinking I might try him on the baby fruit purees that my one year old grandson likes. He might take to these, especially if they are cool in this hot weather and if he does not like them I know someone else who does and who also pinches David's smooth yoghurts given half a chance.
    Tre
     
  12. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,403
    I think it depends on the therapist. We have a really good one. She was the one who came up with the hyoscine patches to control drooling when the doctors knew nothing about them.

    I find this is the worst thing to cope with. It's so random, what's OK one day isn't the next.good luck with the fruit purees if you can get to them fast enough
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.