I am quickly running out of patience tonight. It’s only 1:15am and I have already seen to Mum 4 times since 12:30 either to get her comfy or help her to the commode or change her pants. I’m starting to get really frustrated and and annoyed with her and I hate it as I know she too would rather be sleeping.
The dr prescribed Zopiclone 3.5mg which was totally useless so they allowed me to increase Mum to 7mg which is the max. Again totally useless after the first 2 hours. Has anyone had success with anything else?
She also takes mirtazapine and lorazepam at night
I’m starting to dread falling asleep as I know I will be woken again shortly. My pack pain is now across my arm and down my leg but until OT can figure a way for me to move Mum I have no option but to do it.
I intend on getting someone in on a night time but can’t do this until Mum can be safely moved. There is no way I would expect anyone to do what I do, so until then I will have to keep plodding on.
Mum has Drs on Wednesday and I have left a message tonight for OT to contact me first thing Monday morning.
In the meantime any advice will be taken on board.
Kind regards all,
Sarah.
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Sarah1972
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Argh 😤 my response, if it were possible to scream out loud I often think I would feel better!!! I am currently keeping a diary in prep for CHC funding hence phone in hand and saw your post.
Sarah you are not alone, PSP is a cruel hard journey for patient and carer. Hope the OT can give useful suggestions. Night time sedation is a challenge, not one we have ever fully mastered !! Ask Dr for suggestions explain current meds inadequate.
Your night sounds just like mine!!! Just changed my husband for 3rd time tonight washing basket now overflowing. How much pee can one man produce????
My only advice is an electric blanket for you!! I have just climbed back into a toasty bed really soothing on a sore back and about to plug in my audiobook for a 10 min chill to get me back to sleep.
Sincerely hope as I type you are sleeping and your night gets better
Thank you Tippy and sorry you are unable to get your own sleep. I’m going to try and get a catheter for Mum but not sure how this would be but worth I go and will save the (pull up) pants being changed.
Going to attempt another sleep for the 7th time however that bloody bell has gone again 🙉🙉
I was looking up older strings on Sleep and the one that seems to have the most advice is the one titled Sleep posted by Georgepa about 2 years ago. A variety of approaches, medications etc. are discussed. The things that stood out to me are:
1. Medication: Which one to use? (lots of different ones discussed - most said Zopiclone was 'meh') One member said they used diphenhydramine (allergy medicine) 75 mg on top of other meds! (worked for them!)
2. Continence: eventually carers can't cope with 5 or more get-ups per night and if professional night staff aren't a possibility, they look to urinals, catheters or "depends" type pants
3. Falling: Some carers said they slept in a separate room with a monitor system and didn't get up unless they heard a crash.
I'm sorry I haven't got personal experience to offer, as hubby is mobile enough to get to the toilet himself the 5-6 times per night he gets up! I sure do sympathize on the wrecked sleep though - and all I can offer is support and encouragement to try anything to keep from letting your sleep be disturbed indefinitely - You will wreck your health! I'm currently on a "rotation" - I sleep a night or two with hubby, and then I've had enough and sleep in another room upstairs. If he falls and needs help he uses a doorbell button to alert me and I come down. It's a compromise but if I don't sleep I get sick and then no-one copes and nothing gets done - including care for him.
Thanks for your response Anne. The door bell works for me also 😂 I really think I would go with 3 if I could but unfortunately Mum has a struggle getting in and out, once back in bed she is unable to move so I have to lift her hips to turn her to get her comfortable.
OT is supposed to be sorting something that fits to her bed. She had bed delivered over a week ago but nothing to help turn her. Once I get this in place I can get someone in to do a few nights per week. I’m hoping to go back to work at the end of the month so need to get this sorted ASAP.
I will certainly ask about the catheter as this would make a big difference.
Hi Sarah, I am in same sort of position as you, Colin presses his button all night long, not always for toilet run but “ I can hear the telly” can I have a coffee” what’s the time, I have dropped my tissues, very frustrating when all I want is to sleep.
I also have problems transferring and turning Colin etc, I have just been supplied with sheets that are satiny and skippy they are good and help me out Colin up the bed etc, OT is getting a Turner also I already have the one that needs 2 people to use, but that is not good when I’m on my own as Colin cannot be trusted to hold himself up, so they are bringing me another more heavy and solid looking one that I can use on my own, can’t wait for it to be delivered as I too have aching back and arms, from pulling shoving and lifting Colin.
Totally empathise with you, almost like if you get your sleep can cope with most things, but if you don’t get enough sleep everything is too much.
Helen I’m so sorry but your post made me laugh a little, knowing it’s not just me, makes all the difference. You almost described Mum then to a T. Dropped my tissue!!! Bloody tissues are everywhere throughout the house, most chewed up because the dog finds them. Does it bother Mum? No, not in the slightest.... until bedtime that is 😂 oh dear what will the next chapter bring.
Yes thank god for this site, so many people on here in same sort of situations, and all can empathise who’s each of us. I don’t know what I would have done without it.
Colin snoring loudly atm thinking I could grab a shower quick...
Hope you have (both!) managed to settle your patients (patience!).
Have you tried soothing music in the background? Has helped me in past - but I don't have PSP.
Am also familiar with the drugs you mentioned. Am a little surprised your mum has all 3 at once, but then I am not a doctor. I use Zopiclone myself and know there are times when it refuses to work! When I am 'wound up' before going to bed, worry/thinking/ busy before bed, it doesn't always work. So if your mum is up and down like a yoyo, it may well not work. It also works less well, the more frequently it is taken, and I have to give myself a break every so often for the dose to work more effectively. I wonder if the meds prescribed may work too similarly - just a guess on my part. Maybe she needs something more like is given for hyperactivity. Something to slow her mind down.
Had grandkids who behaved in similar manner. My answer to get sleep for both of us was to snuggle up nearby (bed or chair) until they relaxed. Once relaxed they dropped off.
Other suggestion is more flippant. Earplugs, sherry, light out and ignore! And I know neither of us would do that when PSP is the problem - much as we would like!
Hope you have your phone muted and are both asleep after my ramble!
Oh Sarah, that takes me back. I’m sorry I don’t have any wonderful solution but do write down every time you are disturbed in the night and the reason. I did this for two years and it certainly helped getting CHC and a night nurse for three years after. I made tick charts with date, time, reason for getting up ( different headings) and just ticked in the night and then wrote it in a book the next day. I used to doze during the day if my husband dozed off to try and catch up a bit but you may not be able to do this. He tried various medications but nothing helped for long but they did make him sleepy during the day which was when I took full advantage. At the time it all seemed never ending and I thought I wouldn’t last but it does end and I did survive.
Sarah oh this bloody PSP, we had a very bad night again on Friday night and it went on all day Saturday felt like screaming, I was so tired , I can feel how you are feeling, george is on zopiclone, lorazepam, and clonasapan (not sure how you spell it) , feeling bad for you, lack of sleep is so hard. Sending you a big hug. He thought he could walk yesterday, it was such a hard day, still have a headache from it. Yvonne xxxx
This website helps me keep my sanity most of the time. I got to do my workout yesterday which also helps me. I’ve got it down to 15 minute which is enough for the endorphins to kick in. I add half a 5 mg diazepam when I wake in the middle of the night to make sure I sleep more.
Thanks all for your responses, as suspected there is no miracle way round it. The sooner I can get someone in on an evening the better.
Broke my record of 10 to 12 times last night. It’s one record I do not want to beat again but like the majority of you out there you probably already have or will beat it at some point.
Mother now up and dressed and having her porridge, oblivious to the night before.... did I get you up much in the night??? ‘No mum’ hope you slept well to”
For turning in the bed we have something called Wendy Lett sheets. It is a top and bottom sheet that slide when untucked so it helps you reposition and use to turn like a slide sheet. Have you had training to show how to move someone in bed. There are loads of videos on you tube. It isn't ideal but without these sheets I wouldn't be able to turn mum for personal care at all, it still isn't easy but better.
As for medications I've got no solutions as nothing works for long on Mum but I do have on low relaxation music all night for her and use essential oils on her pillows to try to relax her.
I must applaud your strength. I am commonly stressed, anxious and frustrated in caring for my husband. It’s so sad. When others ask me what would be a breaking point for me, I tell them I’ll make it as long as I can sleep. By evening I am exhausted and sometimes wonder how long I will be able to continue, after resting a few hours I can usually start the day with some renewed strength and optimism .
Your mom sounds like a great lady . My mom lived to almost 98 and I miss her everyday . Mums are so special. I’m sorry both you and her are going through this. I hope help is near.
Hi Sara, I understand what are you talking about "sleep" ! Or sleep deprivation!
We lost our son who was only 31 years young Nov 2014 and not long after our lost they diagnosed my husband Sep 2015 with vascular dementia, then recently after lots of challenges they refer us to neurologist end of Nov and he redignosed my husband with PSP!
I was near complete break down ( toilet run more than 30 times per night) until recently I met our Parkinson's nurse, she organised some night sitters , the first time I was at peace, not be able to sleep ( one bedroom) only because I was not feeling responsible for my husband! It was amazing not to worry each time he was waking up or couldn't sleep! ( worried he us going to fall each time,was heavy and not being able to balance ) The nurses called this kind of not be able to settle down during night , Sun Down syndrome! She asked our GP to prescribe Quetipine 25mg and take him off from any sleeping tablets( not happy to use any "z" sleeping tablets) then I went to a PSP support group and one of the couples managed to tackle the sleeping problem by giving citalopram antidepressant to her husband .
Now after long time battle I am able to sleep for minimum 4 hours most of the nights after 1:30-2 am in the morning, giving my husband camomile or St. John worth herbal tea before 5 pm and not any liquid after that,and one of each tablets around 8 pm he goes to bed around 8:30-9 pm . He will sleep until around 1 or 1:30 am then I try to comfort him and hold his hands singing Laylaby or some of his favourite songs, sometimes takes 15 min and then he will go back to sleep till around 6 am which is great. Sometimes using lavender oil I think is helping too! During night he goes to loo 3-4 times! Recently I know if in the day time he is struggling to be awake he couldn't have a good sleep then I give him 1/2 tablet of lorazepam which will help him to sleep better .
Recently my doughter heard about PURPLE EDITION CBD OIL, I am starting to give him that as well and checked with our nurse to make sure hasn't got any side effect.
I hope it will help.
I am investigating new excercises called TRE, trauma realease excercises and trying to contact with a qualified person and will keep you posted about my journey.
This March, 6 years ago, the PSP presented its first specific symptom on my wife.
Sleeping has always been a battlefield.
I will tell you our experience in case it is useful to someone:
1) Exercise 6 days a week:
Morning.-Passive exercises in bed or chair (Move all major muscles, speech therapy exercises and exercises of mouth and ocular muscles: 2 to 3 hours) and active exercises ((helped by 1 or 2 people: At least go up and down 50 steps (odd days), walk 200-300 meters (even days)).
Then she needs to rest at least 30 '.
Afternoon: 2 hours "siesta" and after a cultural activity and additionally a wheelchair walk for at least 1 hour. In our case it is important an pleasant cultural activity not exciting (avoiding activities or films unpleasant, violent, sad, stressful, etc.)
The tiredness of these activities can help fall asleep.
Six years after the first symptom, she is still exercising, but it seems to be increasingly difficult for her. I encourage her strongly, but it is not easy to overcome her rejection, especially to walk as well as going up and down stairs.
2) Palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 at lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a doctor.
3) Light dinners avoiding proteins as much as possible.
With all these we have achieved nights (22:00 p.m. to 8:00 a.m.) and naps (15:00 p.m. to 17:00 p.m.) mostly quiet.
4) Breakfasts with coffee or thé to combat morning drowsiness.
Hi Luis: are you avoiding protein at dinner because it would keep her awake,?..I would think a carbohydrate-only dinner would cause hunger in the night..?
I know the feeling!!! BUT>>>>>>>>>>>>>>>Charles takes Trazadone now and it has made life so much better. Ask the doctor for some. It's an old drug 60+ years of use so they know how it works. Let me know if you get it.
Typical though as was at Drs today. They gave Mum something to relax her bladder which means she should not need to wee as often. Also took her off blood pressure tablets as they are a diuretic. Not going to hold my breath but one can only hope.
As of last night after calling me 3 times within the hour to say she was uncomfortable I finally worked it out!! What she was meaning is that she wasn’t tired. So put her back in front room to watch tv and she didn’t call me till 3:30 am. Put her to bed, she woke at 6:45 for the toilet, straight back to sleep and that was it until 10:30
It’s probably a one off but right now she is listening to the telly and I am about to try and sleep.
Fingers crossed 🤞🏼
If back to usual I will call Drs and request the Trazadone. Thanks for the advice,
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