PSP Association
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So tired

Well it is 2.46 George doesn’t want to sleep again, another sleepless night, feel like screaming he is kicking the bed and rubbing his feet along the bottom of it, feel like my head is going to explode, I have asked him to not do it and it so annoying, because I am so tired, feel like giving up, just putting my coat on and walking out of the house, I know I am just feeling sorry for myself, but I feel that my life is over, it’s because I am so tired, I just want to go to bed and sleep, but psp makes it impossible to do that, it’s his birthday today, I feel like I am being horrible but no sleep for 2 nights and a bad headache, not sure if I can cope with this illness much longer. I went out for a couple of hours today, only to get a phone call, he was agitated and wanted me, rushing to get home, loads of traffic, he was saying he needed the toilet, rushed it to double up with career, he didn’t go, sorry just feeling sorry for myself and upset with life at the moment, holiday booked for the end of the month, now I am thinking am I going to be able to go, just feel rubbish at the moment, sorry. Yvonne xxxxxx

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Being a member of HU means Never Having to Say You're Sorry!! (remember that movie from the 70s?)

I am SO sympathetic to your plight, Yvonne! Of all the trials of 24/7x365 care for a disabled spouse, the sleeplessness is the worst for me! Nothing can bring me down from 'more or less normal' to 'zombie' faster than missing even 1 night's sleep!! I don't like driving the next day in case my reactions are slow and I'm just plain stupid!

Is there anywhere else you can sleep in the house, using the doorbell or medic alert or some other system if he falls or really needs you? Even a single-size mattress on the floor outside the bedroom?

I can sleep upstairs but I don't like to: I prefer to be in the room with him for all sorts of typical reasons - but when it gets bad, I have to say "good luck - don't worry about the sheets if there's an accident, and press the doorbell or the medic-alert button if you're in trouble". He has enough cognition left to understand that. I always move back to the bedroom the next night and things go ok, more or less, until the next bad night and off we go again...!

Aauugghhh!

Hugs in the meantime ;-)

XXX

Anne G.

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Anne I do have another room, like you I like to be in the same room with him, but I think I am going to move back into the spare bedroom, it’s so hard having no sleep, we have a monitor so will just take that into the other room with me. I have just come back into the bedroom and he has gone to sleep, so will try and sleep, he has the centre today, so it an early start, careers coming in at 7.30 so he is going to be shattered tonight. Thank you for the hug. Yvonne xxxx

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You got it!! Tomorrow is another day! (full of movie quotes tonight ;-)

XXX

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Hi. I had to move into other bedroom last year due to lack of sleep. It was hard but so glad I did. Mum has her seizures during the night so I don't really sleep as always got ear open but it has helped her and me get a decent few hours in the end. She is used to it now and in a way because she knows I'm not right there but close she doesn't play up as much. I have a video baby monitor. She also demands that I'm there all time in day and is foul when have to pop to shops. Glad you had a better day.

I need to sort out a live in respite break. Who are you using for your much needed holiday?

Hugs x

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Yes I know about the bedroom, I use to sleep in the other room, then when he was unwell went back into the room with George and have stopped there, children are always saying go back in the other room, think I will, we also have a baby monitor. Strange everyone is saying about there loved ones not wanting to be left by themselves, george wants me to always sit next time him Yvonne xxxx

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Mum didn't want me to move bedrooms but I came up with idea that I thought I might have a bug and didn't want to give it to her so better I slept next door. She was fine with that explanation and didn't make her feel bad me saying I was exhausted.

I have had times I've had to go sleep by her with seizures but make a point of going again when safe to. I think it has saved some of my sanity too having a bit of own space but it is my Mum not my partner so I would imagine different for when it is your partner you are caring for as you are used to being together for so long.

Xxx

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I think I will do it gradually need to have a bit of space, sad times xxxx

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It is so hard but doing it gradually sounds like a good plan for you both xx

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With my Mum, we used a baby monitor to hear her. When the needing the toilet all the time during the night became so awful up to 15 times and the not going ( another PSP curve ball ) we got a night carer for a few nights a week who sat up. It helped so much. Eventually though my Mum had a catheter and then she slept through the night again. My heart goes out to you but you do have to try to look after yourself as this could be a long phase. Love Steph xx

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Yes we have a baby monitor, thing is he doesn’t need the toilet it hard he is so agitated. Yvonne xxx

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❤️❤️❤️❤️

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Hi Yvonne

Sorry to hear that things are rough and no sleep on a night as I knew that feeling well

Can you get a profiling bed with bed rails on so at least you know george couldn’t get out and you may be able to get some sleep

Archie used to call it his prison but he was safe .I had a chimney on top of my head to let at the steam out. Also can they not give you anything for his agitation

You get yourself on holiday and have a well deserved break that we be well needed

Hope he has a decent birthday and never ever forget you are doing a sterling job

Sending love and kisses

Sue xx

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Sue we have a bed with sides everything in place just one of those weeks xxxx. Didn’t want to give him more medication because he was going to the centre fingers crossed for me tonight xxxxx Yvonne xxxxx

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I think I might need a chimney to let the steam out , with hindsite may be hand cuffs and leg iron's. might do the trick. No !!! a cup of tea will do it for now, and a quick kiss, its not him it's dammed PSP .....Brenda xxx

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Brenda I know bloody PSP is horrible. Big hugs and thank you. Yvonne xxxx

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Dear Yvonne

I feel for you😞 the lack of sleep is so awful. I sleep in a separate room as my hubby takes at least 1.5 hours to get to sleep and then wakes 3-4 times every night despite night sedation. He has night time CPAP and fiddles with mask, bed controls etc on and off all night.

I used to be ( well I thought I was) fairly calm person but confess there is a screaming banshee emerging when sleep deprivation hits!!!!!

I do try to catch a nap when he has an afternoon sleep.

But just to mention - We have a new toy a bed sensor and that helps me sleep if he tries to get up it buzzes me. Though when he plays with bed control it also goes off grrrrr but would still highly recommend.

Hold onto to the thought of your holiday - hope it is a respite break for you and you can sleep and sleep.

IFingets crossed tonight is a better night .

Sending love and a very big hug

Tippy

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Yep - I recognize the screaming banshee...I'm like Jekyll & Hyde when sleep deprived.👿

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Oh so happy I’m not alone sending you a massive hug. Yvonne xxxxx

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Me too Raincitygirl, and then I feel so guilty and horrible the next day when patience is wafer thin. xx

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Me too xxxx

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Boy do I understand. I'm the same way, I become the banshee too. Charles playes with the bed controls and it drives me crazy. I guess it's part and parcel of this nasty PSP!

Sending hugs.

Cuttercat

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But it’s so hard, I settled him and now he is still banging and squeaking the bottom of the bed, I can feel my patients going, no sleep so tired. Big hug back to you. Yvonne xxxxx

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Yes I am thinking about the holiday but worried about leaving him, silly because he will be well looked after xxxx

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You need your break Yvonne. I know you will worry - we always do!!! but the break is for you both. You will come home refreshed and able to cope better. No one can keep going day and night .

I had a live in carer for a week at Easter and we both benefitted so much.

Take care of yourself

Love Tippy

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Yes I agree about having a break, but feel so guilty. Yvonne xxxxx

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Go - Go - Absolutely!!! You Must keep your sanity Yvonne - it's such a long haul...

👍👍✈️⛱🏝

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🛫🛫🛫🛫🛫 xxxxx

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And when you get back you will get the cold shoulder haha

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More than likely xxxx

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I just can't leave either Yvonne. We will have plenty of time alone when they pass. I try to only be gone a couple of hours a day.

Cuttercat

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Same here x

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Oh Yvonne, how you have brought back awful memories of endless sleepless nights. Mine only ended when CHC gave C night carers for which I will be eternally grateful. Does George still have contact with the Hospice? Why I’m asking is that on one occasion a different carer started working on the Fridays C attended. She looked familiar and then she came and said, “Hello, do you remember me? I came and did a few night sits when you were totally exhausted”. This was before we got CHC but I’d totally forgotten. I did however, remember getting a few good night’s sleep.

I don’t know if it’s possible for you but no harm in asking. I do hope you get your holiday. Is it respite or will George be with you?

Try and doze today when George does. I did that a lot. When he had a carer, before the night one, I would go upstairs and sleep or into the summer house. C knew I was in the house so didn’t get so agitated. Once the night nurses came I went out with friends, nearby in case I was called but wasn’t so tired so my mental state was better and able to cope more.

Sending you a big hug and lots of love.

XxxX

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Bev no contact with the hospice, I am going away with our granddaughter she was 18 in January it’s her birthday present from us. Can’t sleep during the day, had a good day with my daughter and granddaughter so feeling refreshed. George was at the centre. Thank you for the hug much needed. Yvonne xxxx

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Bloody hell Yvonne! I’m so so sad for you, nothing about Psp is easy for the patient or carer! I hate what this is doing to you, it’s so incredibly unfair!! Your such a beautiful lady and I hate to think of you so tired and upset! Can you get George into respite for a couple of weeks? I really don’t know how you carry on as you do? I just hope today is a better day and that you can in some way enjoy George’s birthday! The hugest of cuddles being sent your way darling x

Ps you could ask the doctor for McMillan nurses to come in at night for 2 or 3 nights a week x

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Amanda love you so much, he is at the centre had a lovely day with our daughter and granddaughter prom dress shopping xxxxx will have a chat to the doctor xxxxx

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Bless you Yvonne I’m pleased today has been easier for you, may tonight be too! Defo ask the gp or DN, either can organise I believe x ❤️

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Will do had a lovely day prom shopping and a bit of gardening xxxxx

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Hi Yvonne

Sad to read your post, and you are not alone, I looked after my uncle who passed away 4years ago and only yesterday connected back to the site, like that there was days and nights where I would get mad and just want to disappear, and I understand it so difficult while you are going through it. Like that I wouldn't be 5 mins gone out the door when I would have to come back because he needed the toilet and would end up not going. And that use make me so upset to why he would that do.

But thrut be known god love them, he didn't mean to do it, he was just so comfortable with me everyday with him all he wanted was me. He was scared of the unknown not knowing what part of his body would shut down next, What we are going through is hard being a carer it such hard work and commitment, but if I could do all over again I would but not to have him suffer the way he did.

You need to take a break a rest and talk to George they understand everything tell him you just just 2/3 hours to yourself where u can take a nap, do a shop and tell him you will be back to him again . I hope this helps take care of yourself aswell x

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Thank you for your advice, he was so tired when he came home from the centre, children came around with cards and presents, just about kept his eyes open, we are having the family over on Sunday for a barbecue. Yvonne xxxxx

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Yvonne,

My heart goes out to you. You are not alone. Lack of sleep and the constant irritanting behaviors that I am sure that our loved ones do not realize they do, cause increased stress and impacts to our health as caregivers. I know how critical it is to maintain our health as caregivers, but that is easier said than done

I cherish those short breaks away when my wife has coffee with friends or lunch with our children, but these are getting shorter and shorter. She gets increasingly agitated and anxious when I am away.

I wish you strength, rest, and wisdom as you care for George.

Blessings,

Bobby

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Bobby I wonder why they get so agitated? We all just need some time for ourselves don’t we, I think we forget about ourselves xxxxx

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We very do forget about ourselves.....

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So true x

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Lovely lady, I'm not surprised you are exhausted and feel about to loose it! Sleep deprivation has a massive effect on your body and mind. I was lucky in that Ben was pretty good at night and I managed a good few hours most nights. I slept on the sofa in the adjoining room for the last two years as couldn't be bothered putting the folding bed down every night. I had the baby monitor next to my ear and had to get up to check him once or twice a night. It was only when he had a urine infection that he became agitated. He also let me have a bit of respite time with trusted carers so all in all I was fortunate sleepwise. Nevertheless I was still shattered by the end of the day, it's that being on constant alert and having to get things prepared several times a day, feeding, constant flow of carers and medical people, even when given a few hours respite you never stop worrying if they are OK. No wonder you are so worn out Yvonne. Ben was due to go in for a weeks respite next week and I remebember being concerned about leaving him as he was becoming so weak, little did I know that I would loose him before he went in. My dear lady, you go and enjoy your break and let someone else take the reigns, you need a rest. I hope the BBQ goes well, I admire that you still manage to have family events, I gave up on that awhile ago as too much effort. Hope to see you in September at the Brass Monkey.

Big hugs

Kate xxx

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Thank you Kate, hope you are ok? Well as ok as you can be. Hoping all goes for the funeral and the sun shines for your amazing husband, such a sad time, for loads of you at the moment, you are always in my heart Kate sending you the biggest hug every beautiful lady. Going to go away on my week, got career children are around not far away. Yes still like doing family things, children are only at the most 35 minuets away, so it’s easier I suppose!!!!!!! Love Yvonne xxxxx

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Gosh don't be sorry. Haven't we all ranted & cried on here. I rememberpoppibg out to shop one saturday only to get a phone call from him saying I had to go back straight away as he felt ill. I cried in the car park. I just wanted to e free. I also wanted to run from my dad's on many occasions. Run from the huge responsibility. Especially the four weeks that he was bed bound & wanted me to sit by his side all day.

And now he's gone, do I feel bad for those thoughts? No, I won't let myself because it's all part of it, we can't cope without releasing it at times. It's a natural reaction. We do our best. That's all we can do. X

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Yes it is strange that they want us so near all the time, maybe they are frightened of the illness, could it be? I know it is important that I get away. Thank you for your kind words. Yvonne xx.

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Never say sorry, I have been there and done just that, it is so so cruel, you feel so guilty when they finally settle the next day. The last 3 years before I finally had to put Leon into care was a nightmare, looking back I don't know how I did it for so so long. He would wake 30 - 40 times a night. Bang the wall, or whatever he could reach to get my attention, I kept telling myself it is not him it is the dreaded illness, thinking of you and sending hugs

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Yes when he bangs the bed it goes in and on so hard to cope with. Yvonne xxxx

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Hi, Yvonne. Just got this post as I'm up in Yorkshire.

I hope you are feeling better now. Like Kate I was lucky that Chris slept well and rarely got agitated. I slept in a separate room. When I had disturbed nights I felt sleep deprivation was the pits ! I lost all ability to think and felt overwhelmed. I also found it more difficult to leave Chris as he got worse. It felt like abandoning him. I wasn't sure anyone else could really know his needs. It may not be true but he only really wanted me. But I needed space.

Its such an awful situation. Big hug, Yvonne from Jean xxxx

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Oh Jean feeling so sad, hate they way George is living, coughing and choking, now his legs are so weak, think we are going to have to use the hoist, I really wanted him to not have to, but I think time has come. Hope you are having a lovely time in Yorkshire xxxx

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I am !!! I am coming home Friday so won't be able to go to Brass Monkey.

I do now feel glad that Chris' final stage was short. It sounds more torment. xxxx

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I'm dreading that too. Ouch.

Cuttercat

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Bless you Yvonne. I remember these awful nights so well. I would stay/sleep with mum at least twice a week to give dad a rest and she would kick or pinch me if I didn’t answer her, even tho I’d answered her a zillion times earlier.

The hard thing is that it’s not them being difficult....this is the psp talking. I do feel your only relief is going to be night carers........dad eventually had McMillan nurses twice a week so he could go into a different bedroom and sleep. Then once mum was granted CHC she had nite carers every nite although dad and I did all her care in the daytime.

Don’t feel guilty about going on your holiday love. It will recharge your batteries and give you the strength to carry on.

With much love Michele xxx

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Michele isn’t it a horrible illness xxxx

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The worst Yvonne ☹️ Xxx

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The nastiest I could ever think of!

Grrrr.

CC

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Yvonne, thank you for your “rant”! A reminder that I am not alone in my anger and frustration!

xoDorie

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Dorie we are all in this together xxxx

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Dear Yvonne - All my empathy! Sleep is absolutely critical. I had an 8 week period with no or only 2-3 hours sleep per night due to worry and anxiety about my husband and his progressing PSP/CBD. The extreme anxiety which caused the sleep deprivation caused me first to contract a lung infection, then months later, after my sister died and my husband almost died from Sepsis from a UTI, to suffer a total physical and psychological breakdown, which meant I needed hospital care and couldn't provide any care or support for my husband for 61 days. It was the worst, most torturous experience of my life not to be able to be there for him, and remains a deeply painful, shameful memory. Thanks to great professional care and loving family and special friends who cared for both of us during our 2 month separation, we survived and are going forward seizing the days as best we can while my brave, brilliant, funny, beloved and loving spouse’s sad decline inexorably continues bit by bit. I know neither of us would still be here without the care he is receiving from his Longterm care team. It was the hardest decision I’ve ever been forced to make to have him in skilled nursing care. I’m very thankful to be able to bewith my husband every day, except when on brief necessary-for-sanity breaks, and that he still enjoys going out with me in our wheelchair accessible Fiat (a total gift!) to be with family and friends, especially our three young grandchildren and their parents, drives in the lovely countryside and to concerts, movies and lectures at the continuing care retirement community where we live, that engage his intellect - deeply grateful that his cognition is intact. It’s the movement of his arms, limbs, neck, eyes, speech and swallowing that’s going. So Yvonne, please take special care of yourself so you can continue providing the super loving, devoted care you give George. The time away will refresh you and help you both. I admire you and all who share their experiences with these dreadful, life altering conditions and the very helpful advice and encouragement. It’s so good to know we are not alone.

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So happy I have you all on here, it feels like a relief that you all understand what it is like, we are all going through different stages and it helps when everyone shares there experiences. Sad day today Anna came to see George his career for over 2 years, and he held her hand and said I love you Anna, I just broke down crying, I love her as well, never be another career like Anna, so gifted to have had her in our lives for over 2 years. Yvonne xxxxx

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Oh Yvonne, thanks for venting out. I was venting out vicariously reading your post. I do get a lot of sleepless nights with my B specially when he was settling back home from his (mis) adventure from hospital and nursing home.

It can be relentless! Constant fidgeting, getting out of bed and walking dragging catheter night bag, flooding the bed etc. Like you, I have nights I feel like giving up, and even entertained the thought of sending him back to the nursing home!

Some nights I would break down and cry and beg him (sobbing) to be a bit more considerate and to let me sleep so I can look after him the following day! Sleeping in another room is not an option as he is prone to nocturnal wandering and I’m scared he’ll fall down the stairs even if I’ve installed a gate in the bedroom door.

What I found useful (in consultation with the Parkinson’s Nurse) and seemed to work in the past few nights is, NOT giving him his 4pm Co-careldopa. It seemed to have lessened his hallucinations, fidgeting and aggressiveness at night. I also talk to him (to please help me sleep) when I put him to bed and give him his good night kiss and hug. So I’ve been getting better sleep of late.

Best,

Mx

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Good idea will try it, george can’t walk anymore so he doesn’t get out of bed and actually he doesn’t touch his catheter anymore, he use open it all over the floor xxxxx

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Dearest Yvonne, I really feel for you not getting much needed sleep, this bl...y disease is the pits. This coming holiday is vital for you, you need it to get yourself back to an even keel, although I know George will always be in your thoughts. But he will be well looked as I'm sure you wouldn't have booked it otherwise. So go and enjoy the holiday, don't feel guilty, you are brilliant in the care and love you give to George, I just hope I can follow your example in caring for W.

So glad you had a nice day 'prom' shopping and getting some time in the garden.

Hope birthday BBQ goes well tomorrow. Belated birthday wishes to George.

Lots of love, Nanny857 xx. ( 💐 Just for you )

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Thank you lovely lady, you are an amazing lady you care for your husband so well, a true inspiration to us all. Hopefully no rain for the barbecue, been busy marinating the meat and cooking a few Greek dishes, granddaughter has made a cheese cake, so fingers crossed for the weather. Xxxxx

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Sounds great. Hope all goes well and you can relax !!!

xxx

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Jean had a lovely day son in law did the cooking on the barbecue, the other one put up the umbrella, our son helped move everything in the bedroom to make room for the hoist, then our daughter made me sit in the corner so I couldn’t get out to help with the dinner and clearing up. So tired Jean xxxxxx

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Precious memories, Yvonne.

Sleep well.

xxxx

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❤️❤️❤️❤️❤️

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My husband sleeps for a couple hours and then doesn’t want to stay in bed so I get him dressed in the middle of the night and with his walker I help him to his lift chair. He wants the light on and the Tv. He just is content to be there the rest of the night. He says he sleeps and I really don’t know but I go back to bed and get a good five hours of sleep. He is usually awake when I come out but just satisfied to sit in the light. This will no doubt change but at least I get some rest although I have to check on him a couple of times. Go figure? None of us can, we just try to accommodate but it is soooooooo hard knowing that we are trapped with this PSP. Sending hugs and letting you and George know that others care. Nancyxxxxxx

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Thank you, it’s good to know that others are in the same position. Xxxx

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Are you eligible for any respite Yvonne... clearly, you need a break.

Tim xx

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Tim we have everything set up for my break, live in care, and the children are really good . Yvonne xxxx

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Dear Yvonne,

Just now able to get on computer to answer this. Days go by and I'm so busy with Charles I don't post (though I read on my phone each day) and I want my free time to sit on the bed with him. BUT...................

Please ask your doctor for Trazadone again!! It's an old drug 60 years use and it works. You will see a huge difference. Very few side effects. Your sleep is important. So do try to get this drug. It will help you, I promise.

Take care and let me know how you are faring, I truly understand. You and I are at the same stages with our husbands.

Cuttercat

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Well it is 02.34 over here and George is full of medication and he is awake making strange noises, banging the bed, and squeaking his feet on the bottom of the bed, I was so tired, I feel asleep on the sofa, went to bed and he started feeling so fed up, I know it is psp, but a part of me thinks he is doing it on purpose to annoy me, he has had water he is in a nice clean bed, and nice clean bedroom to sleep in. I have tried so hard to make sure he is ok, I have fought his corner to get the care he deserves, I ask myself why me, I have never done anything to hurt anyone, always tried to help people, even when I didn’t have time, brought up 3 beautiful children always put others before myself, it is so hard, our son said today mum you look so tired promise me you will sleep in the other room, tried that but never got to go to sleep so unfair I hate psp xxxxxx

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Dearest Yvonne

They don't do it on purpose. For years I thought so too but they can't help themselves. I feel the same way you do. It's awful. But please promise me you will call your doctor tomorrow and ask for the trazadone. It will help you get the rest you need. The drug quiets their brain.

Love you

Cuttercat

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Will definitely call the doctor today such a bad night xxxxx

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