Hi friends I would be so grateful if anyone has any advice on getting their loved ones who have PSP to sleep through the night. As much as I love my mum it's getting harder and harder already now she doesn't even sleep at all through the night so I don't get any sleep at all. It's so hard surviving with no sleep. Functioning is so difficult. There is no one else to share the load. It's just me. It feels like my health is suffering alot. She didn't sleep much through the nights anyway but now it's been a week and she stares at the ceiling and is wanting to go to the toilet even when she doesn't need to. It's so frustrating I don't know what to do. Please help if anyone has any advice for this. I feel like I can't do it anymore. She just wailes and doesn't listen. Please help I would be so grateful.
Desperate for sleep advice: Hi friends I... - PSP Association
Desperate for sleep advice
I lived your experience. My rescue came in the form of Florence Nightingale Hospice respite care. They took my husband in for what was meant to be a few days to assess his symptoms and mostly give me a chance to rest. By the time he came out we had shifted our perspective to palliative care. It was hard to accept, but also a great relief. We had home carers 4x daily secured and Marie Curie workers offering to do night stays and I was able to be my husband’s wife again for his final six months. You can NOT sustain long term sleeplessness. If you have any charities near you, call them. This disease can bring down two people at once- the patient and the carer. Please ask for help. I wish you strength and peace.
Thank you for being so kind in responding. My mum wouldn't want to leave her home. She gets too nervous and anxious. She relies on me. I've tried sleep pillow sprays to maybe relax her. Some one told me about cbd products maybe they help. It's just so exhausting especially when you have alot of housework. My brother and his wife live with us but unfortunately she doesn't help with any housework or with mum which i don't expect her to do after all it's my mum my responsibility. But she could help with other stuff. She only cooks my brother a meal once a week they eat out mostly and she cleans half the bathroom once a week. I have to do the other half and the rest of the home. My brother is blinded by her and seems oblivious. As long he is okay he couldn't care less. He has a car so luckily he will take mum and me to appointments. I was wondering if there was any other ways of getting mum to sleep apart from a stranger caring for her or letting her stay at a hospice as she cannot communicate anymore and relies on me. Thank you once again for taking the time out to respond. I very much appreciate it. 🌹
Even my mother is like that always seeing at the fan on the ceiling.... She used to urinate and hence we administered catheter with the help of nurse for last 1 year.... Need to change once in every two to three weeks. And my dad sleeps peacefully at night.
Oh boy, I really empathise, as I am in the sleepless bag too! Age 80, diagnosis 4 yrs ago, still able and active but getting wobbly and losing focus. Have been chronic insomniac through life, but getting worse: often 2-4 hrs sleep at night, but average about 5, which is hardly manageable long term. Am taking over-counter sleep aids (for me chemical seems far more effective than herbal), and Doc has prescribed others such as Melatonin, Sominex, Zopiclone. I alternate them all around to get some rest. Then I add into the mix CBD oils, currently CBD Bros White or Purple edition - a few drops. And the homeopath gives stuff to help. Dunno how long this will last, but we are in a 1st floor flat and need move to avoid stairs. Sorting and clearing this place is a mission, almost too much to do!
My partner is a natural carer and help, so all in all I am well looked after. Hoping some of this may help, and wishing you well. Welcome to ask more if you like. With love, hugs and sleep to you. TimbowPSP
I'm sorry to hear you are struggling with sleepnessless.
Have you tried any OTC sleep aids for her or asked her Dr for a prescription sleep aid?
Have you considered a hospice evaluation for comfort care for her at home?
I once read that you can't serve from an empty cup. If you don't make decisions that improve your situation, ie doing all the caring for your mom and all of the housework, meals, etc when you have an able bodied brother living with you, you eventually will have a mental breakdown and collapse. Then what good will that be for your mom? Just saying. Get your brother on board and any other family members if you have any.
Thank you for taking the time out to respond. I try to get her as comfortable as I can . The hospice have provided us a hospital bed downstairs. The nurse has ordered us an air flow mattress. Mum still wants to sleep upstairs in her normal bed. We have a stairlift which I transfer her to from a wheelchair. We bought her a soft foam mattress for her own bed. Everyone in the family is so busy and have no time. My other siblings don't bother to visit mum let alone bother to help. I will try to cut down on housework I do it before it mounts up. Thank you once again for responding. 🌹
Hi Cinderella80!!
Agree with suggestions of Troubleandstrife and LFG3.
Our informations and experiences are these:
Symptom control: Most people only take medication for symptom control.
• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.
(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Kevin_1:
healthunlocked.com/psp/post...
Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :
karger.com/Article/FullText...
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Urinary incontinence. Martina_MP and Kayelless provide these comments:
This development is very common. Not to worry; it’s manageable. Yes as Kayelless says, get a supply of the larger washable pads (such as 34”x36”) and put one on top of the sheets. I actually put a disposable underpad on top of that. So then you only have to change the pads and not the whole bed. Also use thicker pull-up underwear (or diaper) at night; Tena Overnight is very good absorbancy, plus put a “booster pad” inside. The booster pad adds absorbancy but allows liquid to flow through to let the pull-up padding absorb also. We have tried several and I think TotalDry Maximum Boost ups (in the US) are good. I don’t know what they have in UK but apparently they are called nappy booster pads there. You can get smaller washable under pads, seat size, for your recliner and wherever else you habitually sit.
Nightgowns might be easier to manage than pajamas.
Hug and luck.
Luis
Thank you for taking the time out to respond. You have taken the time out to produce so much info. Very much appreciated. Thank you. 🌹
You’ve had some excellent responses to your latest post, please act on them. We don’t have all the answers, sometimes there are no answers but all the advice given here is from personal experience. Call your doctor today, explain that you are at breaking point and ask him to arrange respite care for your mum. How on earth are you going to care for her if you go down like a pack of cards, and believe me you will - you are not superhuman. On this forum we have all been through mind numbing challenges, often having to make hard decisions for our loved one but the relief that comes from making these decisions can be enormous. If you get the right support now it’s highly likely you will be able to keep your mum at home for the duration of this awful illness. If you don’t then without doubt you’ll get to a crisis point and the decisions may not be yours to make. Remember, PSP is progressive and huge downward spirals can occur in the wink of an eye.
Get the help you need today, Cinderella, it’s not a failure on your part, on the contrary it’s about doing what’s best for you both. Housework is not an excuse for not getting any downtime for yourself, many of us on this forum will have watched the dust pile up when every hour of our day was taken up with other things, often sheer exhaustion. If your brother and his wife have a problem with that then they need to search out where the vacuum and dusters are kept.
Love and much respect.
Hils
Thankyou for taking the time out to respond. It's so hard but I try to do my best. I will definitely try to cut down on the chores. Thank you once again. 🌹
a few thoughts occur to me. Have you got a health and care power of attorney in place? If not then if you get ill then the professionals will make decisions for your mother, that may not be what you or your brother want. You could use this as a way to get your brother involved as he should also be named.
I guess your brother is culturally not used to the concept of men doing house work. Does he have male friends or relatives who help around the house? Perhaps you could talk to them and ask them to have a word with him? Do you know if your mother would expect him to help out around the house? If she traditionally never expected any men to help out your brother may feel he is doing the right thing with just helping with the driving. He probably also thinks that you are very capable and he wouldn’t be able to do anything for your mum like you can. His wife will probably feel like an incomer into your house and may feel that she is not as capable as you - although wouldn’t dream of admitting it.
If they work then perhaps you could suggest that they pay for a cleaner to come in to take on half of the cleaning tasks. Perhaps they could contribute more to the budget so you can buy ready meals? There are companies like Cook that do really good quality meals that taste home made.
Thankyou for taking the time out to respond. If I get ill it will fall on my brothers head then maybe he will truly understand how its been. It's defo not a cultural thing he washes dishes, Hoovers his and wife's bedroom and does alot for his wife. He can manage all that for his wife. I guess a wife is more valuable than a sister! Mum can only have soups now which I have to get the texture and consistency just right. I try to make her home made so they can be more nutritious. Thank you once again. 🌹
Please listen to some of the excellent answers on this and other posts. Unfortunately, hard decisions to have to be made and from my experience and what I have read from others here, everyone has had to despite it being not what we or our loved one ideally want. We understand your mother would rather not be moved/go elsewhere for respite/have carers but there comes a point where our preferences cannot be met and we need to accept outside help. Of course your Mum is anxious and scared of how this vicious disease will advance but she might find reassurance from carers. She (and you) won't know until you try it. Nothing is ever lost by trying things. There's a reason it's called tough love.
Sometimes, when I read your posts I wonder if there's an element of coercive control from your brother and mother. I do hope not. Have the mental strength to do something for you each day and enjoy it. Think of it as a prescription. If the boot were on the other foot , I wouldn't expect my children to care for me 24/7.
Finally, and I hope someone here will correct me if I'm wrong, no-one on their deathbed ever expressed regrets about doing enough housework!
Thank you for taking the time out to respond. I will try to cut down on the housework. My brother and his wife think the fairy comes and cleans up! Thank you for your kind words. 🌹
This might be a helpful resource:PSPsleepstudy.com
Elevating the head of my mother's bed, mentholatem roll on on her arms and neck, peppermint oil on upper lip, , Vicks vaporizer plug-in, Tizanidine (muscle relaxer near bed-time), adjust her meds if any tend to make her sleepy to bed-time. Her doc probably has some sleep med suggestions they can write for her to occasionally give you a night's break.
I, like you, did not feel right leaving my mother with others. But a few times I had to leave her with a trusted aide and go to a nearby hotel where I could just pass out and really sleep. I explained to my mom that I was tired, getting cross & grumpy, and she deserved to be treated better than grumpy me was doing. She seemed to understand.
I have never really cared much about housework, but now I just do what I feel like has to be done (dirty dishes) and let the rest go until something bothers me. There are two other able bodied adults in your home. Decide it doesn't bother you, if it bothers them then they can dust, etc.
Hugs and I am sorry. This is difficult.
Thank you for taking the time out to respond. Unfortunately there is no one else who is trustworthy. My brother gave me a rest the other night for the first time ever. She didn't get up once with him. I am trying to cut down on housework. The able bodied people in the house are useless. They don't mind living in a mess. Instead his wife looks at me with disgust and ignores me. She has a real attitude problem and has no compassion. Thank you for being so kind. 🌹
My father had the same t hing.....3 weeks without any real sleep and I was had it. A resthome was the only right thing to do for him and for me. Nobody wants it, but the situation/disease presents itself in a way that leaves it the only option. Start working getting her into a home where you can visit regularly and become her daughter again not her carer. Not sleeping at night is part of the disease. I know you mean well and you are coming from a loving place but without stepping back from this and getting a new perspective you will burn out.
Thank you for taking the time out to respond. Unfortunately there is no one available to help. She seems to be getting worse not sleeping at all in the nights. Thank you again for being kind. 🌹
Hi, you've already had some great replies about respite and support, I just wanted to add that my Mum takes melatonin and zopiclone, so I would definitely speak to the GP if you haven't already. I really hope you find a solution and get some sleep soon
Thank you for taking the time out to respond. The nurse from the hospice suggested sleep hygiene. She told me to google it. I have tried all that nothing seems to work. She said tablets come with side effects. I was wondering if your mum has suffered any side effects in taking the tablets and what they are if any. Thank you once again. 🌹
To be honest it sounds like you need more than sleep hygiene to help you out, although of course that can be helpful. My Mum has taken melatonin every night for a long time now so it's difficult to say whether it causes any side effects... she only takes zopiclone when she feels her sleep was really bad the night before, this definitely works but seems to wipe her out the next day as well which then makes mobility and everything more difficult - in speaking to the doctor at her meds review recently they suggested trying a lower dose, and gave us a pill cutter, so we will try that. I think it would definitely be worth trying some medications, the nurse must not realise quite how bad your situation is so maybe try speaking to them again or your GP
Thank you for being so kind in responding. You have been really helpful. I will try with the gp although he doesn't seem bothered. I will try a lower dose first. I was thinking about herbal tablets. If mum gets wiped out it will be very difficult getting her to do other things such as eating which is pretty difficult anyway. Thanks again. I very much appreciate your help. 🌹
It's no problem! That's annoying about your GP, we're lucky to have a really good surgery where I live, although none of them know/knew anything about PSP. I think the lower dose is 1/2 tablet. Hope you get some help and sleep x
Thank you so much! 🌷
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