Carer

[Teddies]

First post for me mum has PSP in respite care this week needs assistance cannot walk without aid cannot bend knees difficulty speaking often coughs / chokes needs assistance to go to toilet showering etc her hubby cares for her but says that she doesn’t wake him in the night if she needs to get up does anyone have any experience of bed monitor pads/alarms? Movement alarms? Thank you xx

[Baileyboo]

Hi Teddies

I have just read your post. Welcome to this forum, I am sad you are in the position to join us. You are very welcome. I am sure you will receive the answer to most of your questions.

I am sorry I can't help with your question about alarm pads as my husband was in a care home. Due to the compulsiveness of PSP they put alarm pads on his chair. The worry I had was that they constantly needed batteries. They rarely helped. I am sure there will be better alarm pads now and hopefully you will receive the help you need to gain some kind of system.

I lost my husband 18 months ago and I struggle to deal with this. I have found the support, care and love from friends in this forum invaluable. I am sure you will receive the support you are requesting.

I am sending a huge hug to you and your family.

Pat xx

[Teddies in reply to Baileyboo]

Thank you Pat I am so sorry for your loss it is truly a devastating disease sending a hug to you xx

[Satt2015]

Hi Teddies

Welcome but equally sorry to have to welcome you!

Ask the hospice or neuro team if they can provide a pillow sensor, I know NannaB used a baby monitor. Hopefully others will share more but I know this is a tricky one. Good luck and keep posting x

[Teddies in reply to Satt2015]

Thank you I have been reading this forum for two years now and found in has a wealth of knowledge real people experiencing the same problems xx

[Satt2015 in reply to Teddies]

Keep posting and asking, everyone will help you! X

[AJK2001]

Get in touch with your local Occupational Therapist, they can provide pressure pad alarms and such like. And also make sure you have grab rails in place for showering and a shower chair. Sounds like she should have an assessment before going back home to allow her hubby to look after her safely.

[Teddies in reply to AJK2001]

Thank you for your reply mum will be discharged tomorrow so will see if they have any suggestions x

[Dadshelper]

Welcome to the site. I've never used a monitor pad but they do work, unless the person who needs to wake is a very sound sleeper. It is worth a try getting one as it is a good safety device.

Ron

[Teddies in reply to Dadshelper]

Thank you x

[kiwitaramerlin]

You can buy a monitor pad to put on/under the chair ou bed it does work. But the only thing is when you put it on/under the chair ou bed when people move that make noise all the time.

[Teddies in reply to kiwitaramerlin]

Thank you for your reply x

[Suebatt]

Hi teddies

I always had Archie at home and we had telecare linked to the phone .had it on his chair and bed it was a godsend as he was a Bugar thinking he could get up without any help we had a rise and recliner but in the end I removed the remote that solved the problem on the chair then we had a profiling bed with sides on helped too

Hope this helps

Take care sue xx

[Teddies in reply to Suebatt]

Thank you Sue will see how we get on x

[Tillie281]

I am not certain what the problem is.

1-leaving bed without hubby realising it? I have no experience with the pads. (sorry)

2-Can does not make it to the WC.

My wife has PSP and is incontinent. Every night before going to sleep I put on a wraparound pad. (almost 100 cm long) and as an extra, I put a pair of pull up pants over the wrap around. This way the urine or poo cannot get on to the underlay.

The next day I put on a clean change of pants.

I

[Teddies in reply to Tillie281]

He just worries that she doesn’t wake him when she wants to get out of bed and tries to get up herself and may fall

[LuisRodicioRodicio]

Hi Teddies!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I can send you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan.The information I can send you through this private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

Hug and luck.

Luis

[Teddies in reply to LuisRodicioRodicio]

Thank you x

[Ottojames]

They make video baby monitors.. found them at best buy has been the biggest help.. or just a noisy bed

[Teddies in reply to Ottojames]

Thank you xx