Jus' waivin' hello (Watching Free State of Jones' at the moment.)
Things have been full on here for a week or so.
Liz and I have been doing very well together - so a lot of love flowing.
Another PSP step down... I'm now having to get up a couple of times in the night to help with toileting. We have separate rooms and I don't always here here calling for assistance (only 20 feet apart) - because of my hearing. Having a wireless door bell repeater next to my bed does not help either - I am deaf in one ear. Any suggestions on how she could wake me would be most welcome. (Remember it is illegal to do cruel things to carers).
We had the dreaded CHC review today... We agreed on all but one score - the one we needed to make it sure fire to go through. Watch this space. Gosh, that was stressful. Liz was a trooper though. It was very gruelling to have all that drawn out over two hours. We shared a bar of chocolate in commiseration afterwards.
Finally we have been changing the lounge in readiness for the future when she can no longer transfer and she needs to have her bed downstairs. It involves buying a TV... ugh I have not had one of those since 1984 and we kept it in the cupboard then!
(Liz and I go have been partners for 17 years, but have only been married and lived together for three.) She is jubilant on getting as T.V. (again) which auto records all of her favorites.
She's getting wireless headphones for X-mas (early) - doesn't know that yet
Now, what's going to kick up next? - there must be a PSP manual around here somewhere!
Best to you all
Hugs
Kevin
I will try to catch up with the forum over next couple of days.
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Not sure bout this ? Maybe a baby monitor or if your as deaf as I am, are you able too have 2 beds next to each other downstairs? I warn you now, that night time getting up carry on is very tiring and you'll hardly sleep for listening out!! So following on to chc, can they provide night care? Because I think you may need this or dare I say, incontience pads? Also the transferring and trying to stand at night for Psp patients is even harder at night (especially as we are knackered too)!!
Tv, aha, good!! This will be good company for dear Liz!! Personally I couldn't live without it! You must have some very good activities going on not to have a tv since 1984 lol!!
Sounds as if you have had an exciting week Kevin. Those night calls are a killer but if Liz doesn't want pads yet, and I can understand why she wouldn't, you could perhaps get a life line. I had one for Colin. You know the buttons you can press in an emergency which connects to a call station, well C had one but it only notified me. The occupational therapist organised it but it came from an outside emergency agency. I had pressure pads put on the floor by his bed and on his chair so if he got out of bed the receiver would buzz but also vibrate. I put the receiver by my head at night as hearing in one ear isn't good and always felt the vibrations. It took me a while to get used to it and the first night it went off I thought I was being attacked by a giant insect. During the day it was clipped to my belt so vibrated if he got out of his chair. He also had a button on a band round his wrist he could press during the day, as well as his remote door bell.
Thanks for the update, Kevin. I was just wondering today where you and Liz had got to. Great that you can make plans together. I rather envy that. Love to you both, ec
Sounds like you all did a great job. Glad the review is behind you. It is good to prepare ahead. You seem on top of it all. I can just imagine how excited Liz is with the tv. I had to get one for the overnight girl in her bedroom and cable and WiFi. That is agency policy. Also 8 hours of uninterupted sleep and 4 hour break . Needless to say I might as well do it myself. Do you have all these rules over there too? I may have to get a temporary Filipino worker. I hate to do it with all the unemployment here but people here want pay but not do much. Don't mind me I am a little jaded this week. Keep up the good fight you too. Hugs for both.
Keeping everything crossed for Chc and well done Liz it's a horrendous checklist for her to attend.
Dad is also hard of hearing the NEuro enablement team provided mum with a pad that she presses when she needs dad, he has a pager which makes a high shrieking noise if he doesn't hear it it also vibrates, it's also quite handy because he can take the pager into the garden (dads a keen gardener)
Hi Kevin and Good luck,Hope you laid it on with a trowel,CHC panels like to take points down a notch. PSPA do a fact sheet that could help CHC Panels to understand better. The panel judging Des did not understand the concept of progressive so while they thought he might improve in fact he died proving pretty conclusively xxxx PSP is only going one way.There is an ap to go on tablets (which are quite cheap now) when communication becomes harder there is a symbol for hungry thirsty toilet etc might be worth a try.Maybe you will wake better than you think,it is like babies half of you is alert while asleep.Everything crossed for you Px
Hi Kevin. It's all go go go in your house at the moment. My hubby has bed downstairs and I am up but my hearing is good. A friend of a friend who had PSP and is now deceased, God rest her, also had an internal alarm just for the house. Her daughters were always there but had things to do so it was invaluable if they were upstairs or in the garden. Not sure if they organised it themselves though. OTs should know though. Good luck. Marie
You have been busy (I still haven't even begun my appeal prep!)
I use a baby monitor sometimes with Mum in daytime if I need to be in another room. It has noise and lights on it. Mums voice has always had a soft quiet element and she cannot raise it to shout. At night I sleep next to her as saves my energy coming in from other bedroom and like you I wouldn't hear as I'm deaf in one ear. Mum does have pads though so at present the requests from toilet have stopped since she had pads after her hospital stay in Spring. Mum wakes alot during the night and she hates the night time. Anxiety goes through the roof.
Not sure I've helped at all in your question sorry!
Someone suggested a baby monitor with a camera. I haven't got round to it yet. The trouble I have is that Chris won't press the buzzer I got him. He can't really shout at times. It means being ever-alert.
At present its not too bad. He has a convene at night. He takes it off about 6.00 and I am on duty. So I get a nights sleep.
Hi All! It's 2 am here and my sister, God bless her, got a case of "jumpitis". She gets up at any time and makes herslf known whether I Am awake or asleep. She doesn't seem to care about my well-being. I'm sorry, on a small rant. Dear Cuttercat, think very carefully about getting a lift chair. I thought it would be great in helping me to help her to kkstand up to go somewhere. I thought it would be a back saver. Truth is, my sister is very quiet and the chair does not make any sound and she Never let's anyone know she needs to go somewhere. Therefore, she has snuck up behind or disappeared alltogether. Needless to say I just ordered a chair pad alarm to let me know she's on the move. Next, will be a bed pad. Just think about it. That chair gives her a sense of freedom that could be deadly.
Charles doesn't get up anymore but his muscles get twitching and he is so restless that at 4:30 this morning he was awake and doing things. Aaach.
I haven't ordered the chair yet and you make a good point, but now he doesn't run around like he used to. Part of the PSP journey. I have another acronym for PSP and I can't type it here! Ha Ha
How about a sound and vibration alerting youknow like on phones.....Or even easier make whatever you have now , LOUDER...hahaha
seriously...no one else will be there, she will know she is communicating with you and you most likely will be able to hear it esp. if it's close to both ears even when sleeping on good ear.
sorry about the CHC...but you know to hold on and fight , fight , fight!!!!
No tv since 1984? I would love to have had no tv...!!! wireless headphones sound cool...She will love them!
PSP manual? well Easterncedar is a good go to person ...lots of info there...and I always refer YOU to everyone else...so I guess for NHS and CHC on PSP you are the manual, baby! LOL
Hi you two, I've been having to help F in and out of bed during the night for a few months now, we're still in the same bed so can't help with that, but it sure puts me in a bad mood when I've just nodded off again, and he wakes me!
I'm not a great fan of TV, but it's F's best friend, iPad being mine!! Trouble is he now has trouble seeing/co ordinating pressing the buttons on the remote, so I get called press buttons!!
Good luck with reorganising your house, I was hoping to move somewhere more suitable for sleeping downstairs before F could no longer manage the stairs, but I think PSP might decide different, he's had 2 bad falls in the last 4 days.
Yep, Debbie, we are there too. House is beginning to look like a hospital ward. I'm beyond caring now. We are working with medical to get a hospital bed, but he doesn't meet criteria yet. And of course a wheelchair. So much for my walls which have holes in them.
Hi Kevin, good to have you back. I have my fingers crossed that CHC goes through for you. Sorry I can't add more to what has already been suggested regarding alarm system for waking.
Hope all goes well reorganising downstairs and Liz enjoys her wireless headphones.
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