For many of our twenty ’24-hour care’ months with DJ, sleep has been a Most Precious Commodity. Quite quickly TH and I developed the habit of sleeping with at least one ear open, in hopes of not being awoken by the bedroom light being turned on unexpectedly at 2am…… To hear DJ approaching before that moment is certainly preferable….. quite how he gets up the stairs without making a sound is astonishing – certainly, neither TH or I can manage it – and in the days when Miss Mog ruled downstairs as well as upstairs you ALWAYS heard her ascending ! DJ is no lightweight, and the Assessment Centre clearly disbelieve me if I say he is capable of understanding his actions….. so WHY then does he CREEP around the house at night ?
A crashing sound is also an unfavourable way to be roused from sleep, especially for TH who has to get up for work the next day. DJ has mostly managed to bounce most resiliently (he evidently has a most attentive Guardian Angel) - but his skin is extremely fragile, and it can tear very easily when he falls. A little blood can go a long, long way if you’re fast asleep and didn’t hear anything……..
So TH (who used to work with housing for special needs tenants) and I (formerly a health care professional working with seriously acute health problems), quite quickly identified 2 needs:
(1) We needed a system to inform / awaken his Main Carer if DJ was out of bed;
(2) This same system must NOT wake TH……..
We were, of course, a bit more specific about other requirements of this kit. Oh yes, and we searched the internet and found 3 systems, but the manufacturers wouldn’t supply us directly, needing a social work referral…
At that stage we didn’t have a Social Worker……. and without a ‘Named SW’ we could get precisely Nowhere. I think we’d push harder now. ‘Duty SWs’ were really out of their depth, and passed the buck… It took 6 months to get an allocated SW. Then it took another 6 months to persuade said SW that (a) such a system was necessary, and (b) that such a system existed……. THEN we were allocated to an OT…… so had to jump thru all these same hoops all over again – and then the OT passed it to a ‘gadget man’ who had to find a significantly cheaper product… never mind that it was cheaper for a reason (like being unreliable, and uneconomical on the batteries that – oh, surprise ! - WE have to fund)……..
So – it took about a year to get a (very limited) system (“which we wouldn’t normally supply, but have done as a special favour to you” - and yes – I think that WAS actually said to me by ‘The Professional’).
And then…… the system failed over and over and over again. (Wonder if that’s why the Altzheimer’s Info Technology site - see http://www.atdementia.org.uk/default.asp - don’t recommend this one….). Poor ‘gadgetman’ had to come back to us again and again and again, and given that he is only paid to supply, and not to maintain equipment, it was very very kind of him………
TH and I cracked the wasted battery farce by purchasing a battery tester, rechargeable batteries and recharger. At Great Price, of course – though significantly cheaper than the accumulating cost all those standard batteries which had to be replaced (and which were subsequently found to be ‘full power’ by the new tester……… )
So now, assuming the ‘change battery’ sound hasn’t started after DJ has gone to bed (ever considered that hearing problems may be a blessing ?), and Sleep has allowed us access, TH and ChickPea now gets some ShutEye, knowing that if DJ gets up, ChickPea will get woken by a wee ‘personal pager’ buzzer, so can deal with the ‘Why ?’ factor.……. Good, eh……….
A crashing sound is also an unfavourable way to be roused from sleep, especially for TH who has to get up for work the next day. DJ has mostly managed to bounce most resiliently (he evidently has a most attentive Guardian Angel) - but his skin is extremely fragile, and it can tear very easily when he falls. A little blood can go a long, long way if you’re fast asleep and didn’t hear anything……..
So TH (who used to work with housing for special needs tenants) and I (formerly a health care professional working with seriously acute health problems), quite quickly identified 2 needs:
(1) We needed a system to inform / awaken his Main Carer if DJ was out of bed;
(2) This same system must NOT wake TH……..
We were, of course, a bit more specific about other requirements of this kit. Oh yes, and we searched the internet and found 3 systems, but the manufacturers wouldn’t supply us directly, needing a social work referral…
At that stage we didn’t have a Social Worker……. and without a ‘Named SW’ we could get precisely Nowhere. I think we’d push harder now. ‘Duty SWs’ were really out of their depth, and passed the buck… It took 6 months to get an allocated SW. Then it took another 6 months to persuade said SW that (a) such a system was necessary, and (b) that such a system existed……. THEN we were allocated to an OT…… so had to jump thru all these same hoops all over again – and then the OT passed it to a ‘gadget man’ who had to find a significantly cheaper product… never mind that it was cheaper for a reason (like being unreliable, and uneconomical on the batteries that – oh, surprise ! - WE have to fund)……..
So – it took about a year to get a (very limited) system (“which we wouldn’t normally supply, but have done as a special favour to you” - and yes – I think that WAS actually said to me by ‘The Professional’).
And then…… the system failed over and over and over again. (Wonder if that’s why the Altzheimer’s Info Technology site - see http://www.atdementia.org.uk/default.asp - don’t recommend this one….). Poor ‘gadgetman’ had to come back to us again and again and again, and given that he is only paid to supply, and not to maintain equipment, it was very very kind of him………
TH and I cracked the wasted battery farce by purchasing a battery tester, rechargeable batteries and recharger. At Great Price, of course – though significantly cheaper than the accumulating cost all those standard batteries which had to be replaced (and which were subsequently found to be ‘full power’ by the new tester……… )
So now, assuming the ‘change battery’ sound hasn’t started after DJ has gone to bed (ever considered that hearing problems may be a blessing ?), and Sleep has allowed us access, TH and ChickPea now gets some ShutEye, knowing that if DJ gets up, ChickPea will get woken by a wee ‘personal pager’ buzzer, so can deal with the ‘Why ?’ factor.……. Good, eh……….
