Disturbed sleep

3:30 am. Been woken for the third time tonight again. Wife with Parkinson’s needs to go to the loo multiple times a night. Won’t use a commode but insists on putting light on to get to the toilet with a zimmer, flushes then back to bed. Takes about 15 minutes each time. I am seriously lacking sleep. How do I persuade her to use the commode which wouldn’t require me to wake every time?

Hi Noddir,
My Husband has PD and I’ve been in the same situation as you, although I am lucky, in that I can fall asleep again very easily, (I guess I have my Rheumatoid Arthritis to thank for that!). Broken sleep is never good though and you must be feeling exhausted.

I can understand your Wife’s reluctance to use a commode, which could be for any number of reasons. Has she shared her thoughts with you? If you know why she doesn’t want to use one, you may be able to offer some reassurance that it isn’t anything to be concerned about. Or suggest some sort of compromise.

Noddir,

Not answering your question directly but, @Chris_22081 has a red light bulb in the hall for his husband to see the way to the toilet in the night. He has found it disturbs his sleep less and its easier to go back to sleep after being woken. I use a red portable light when supporting S in the night for the same reason.

Can you wife explain why she doesn’t want to use the commode? If she could put it into words, it might help to find away around her objection.

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The suggestion of the red light came from my doctor who uses ‘red headlamps’ for hi and his family during the night to help with less disturbance for them or anyone else in the house. They seem odd at first but its easy to get used to them.

‘Sleep hygiene’ was one of the first things he mentions - making sure the bedroom is dark and quiet and at the right temperature all make it easier to get to sleep and get back to sleep in the event of waking. Graham used to be up between four and six times during the night and would trip over things - no matter how I tried to make sure he had a ‘clear runway’ as the doc called it and the sudden click of a light always disturbed me, so I know what it can be like. I was also on tenterhooks waiting in case he fell or got stuck!

This GP runs ‘sleep courses’ and when he first spoke to me and found I am a Carer his response was ‘most of the people I help are new parents or Carers’. You have a similar problem to the one I had, but mine got worse because I found I was then finally getting up at 3 or 4am and not getting any sleep after that time. I was a walking zombie at times.

Have you spoken to GP to see if there is anything that can be done to help your wife? Recently Graham has had a recurrence of bad continence issues and this was starting to result in lack of sleep for me again. Now he is on a tablet which he takes at 5pm. Its supposed to help empty his bladder before bed and then he wears thick pads so if he has a ‘flood’ it is contained. It has helped but not solved the issue and I have pads on the bed but still end up changing bed most mornings. However, changing the bed is better than no sleep!

This probably isn’t much help, but you are not alone in your problems. We also have to buy extra pads because NHS won’t supply the ones which we have found are best for G - such as refusing to supply pants, which are the best thing for him!

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Thanks for the suggestions. Been to see the GP. not a lot of use. Just suggested otc sleep aids. Invested in a couple of red night lights which have made a difference. Now my wife doesn’t switch the bedside light on as often which is much better.

A suggestion made to me was that the bedroom needs to be a nice calm relaxing place and I was asked if it was a neat and tidy place - oh what a joke!!! Apparently, it’s been proved that if the bedroom is calm and orderly the brain has less to distract from sleep. Also I was recommended to have “a Sanctuary” where I could go if I couldn’t sleep. Play some gentle music or maybe listen to a story which distracts the brain and allows it to get back to sleep mode. If being really strict - no TV or computers/e-readers etc for at least two hours before bedtime; no luminous alarm clocks or digital clocks which give off ANY light; good thick curtains to prevent any outside light getting in.

Some of those, I think, help me …when I prepare properly…

Good to read the red light is working. I find that an amazing help too.

Another interesting point to bear in mind is not to have a meal too late in the evening. So many of us have a main meal mid evening or even later.

It’s been proven that when we eat the body starts digesting food and generates HEAT as it does so. When we sleep the body needs to COOL. The heat generated by digestion prevents the body cooling to it’s sleep mode and therefore sleep can be poor or reduced.

Just another thing to bear in mind - it may not work for everyone, and can be difficult when dealing with a family and even worse as a Carer - but could be worth considering trying a different timetable IF you can.