Patience

[Unicorn2022]

It’s now 01.40 am. We went to bed at 22.30, I have yet to sleep. I found myself shouting at him and I feel awful. We sleep in separate rooms as I still work have to be up early plus hubby says I snore- cheeky bugger. I feel like he calls me for no reason, we have had 4 toilet calls, 5 not comfortable and a can’t breath. Took blood pressure, check temperature, checked oxygen levels all fine and no crackle on the chest. I told him quite forcefully not to bang that wall again and to shut his eyes and sleep, he said he tries and I told him to try harder. I feel so mean as I love him dearly and can’t imagine what is going on in his once brilliant mind, he must think that I hate him. Oh well let’s try and get 40 winks xx

[Dadshelper]

You are just being human. These are situations we can't control no matter how hard we try. We see a problem and react to fix it, sometimes with success, other times we fail. I doubt he hates you, doubtful he hates anyone. Your feelings for him haven't changed, you just hate the disease, as we all do. Hopefully after a nights sleep you'll see the sun has come up, all the words washed away under the bridge and we continue on, as we always do.

Ron

[Unicorn2022 in reply to Dadshelper]

I know Ron. I’m still a bit grumpy this morning but I will get better throughout the day. I just hate bedtime as I know what’s coming. Onwards and upwards 😁x

[Tippyleaf]

The lack of sleep I found s huge challenge. There are lots of sleep hygiene suggestions which may help. Does your husband take any night sedation? If not would be good to discuss his lack of sleep with his neurologist. You both need sleep

Take care of yourself

Love Tippy

Xxx

[Yvonneandgeorge in reply to Tippyleaf]

This really brought back memories, made me feel so sad, also sad for you, I use to say to George I need to sleep to function the next day and to be able to look after you. George use to bang and kick the bed xxx

[Unicorn2022 in reply to Yvonneandgeorge]

It must be so frustrating for my husband and other people who have this awful condition. I actually said to him last night that I think he does it on purpose, as soon as it came out of my mouth I was so ashamed. I told him him if he knocked the wall again I was buying him boxing gloves 🥊. Oh well let’s try again today, with a smile x

[doglington in reply to Unicorn2022]

We've all been there. On one occasion I said if he got up and fell again I would leave him to get up - knowing he couldn't. Of course he did within 2 minutes !

Fortunately I found my sense of humour at that point.

Lack of sleep is so debilitating.

Love Jean xx

[Unicorn2022 in reply to Tippyleaf]

Our GP has put sleeping tablets on a repeat prescription now but they make very little difference. We are having a profiling bed delivered soon so I am hoping that may help. We have an appointment with the Parkinson’s consultant next week so I will ask. Thank

You x

[Hidden]

Being grumpy and irritable is a big part of my life. I snap at Larry. I would feel worse about it if I didn’t have this website to know it is normal to be grumpy and irritable when sleep deprived and having a constant level of free floating anxiety. It’s exhausting. At least it is Friday. Hope the weekend present an opportunity for you to recharge.

[Nanny857]

Yes, I have done the same as you, we just can't function well with lack of sleep. We react in a certain way and then the guilt comes on. Hope tonight is better for you and a brighter day tomorrow. Lots of love Nanny857xx

[Unicorn2022]

Unfortunately it wasn’t a better night but I was a little bit more patient. A few expletives once I got back into bed, under my breath x

[Jpinckney2usmc]

I tell myself for, richer for poorer through sickness and health until death do us part. My wife is my best friend. Just spent two hours cleaning up poop. Would get her cleaned and started to dress and her it came again. Finally go her into bed told her I loved her above all others. She is the finest person I know. Did three tours in nam Marine Infantry. This is the hardest thing I have ever done. Hang in there your task is appreciated by your loved one.

[doglington in reply to Jpinckney2usmc]

I so remember that feeling.

Jean xx

[AJK2001]

Everyone of us has had those times when we've snapped and immediately regretted it, it's part of being human. Someone on here posted once about saying that it was the disease you are angry with and not the person, I've found this very useful and when I apologise to Mum I say it's not her I'm angry and frustrated with but the condition. It's an attitude of mind that seems to help us both deal with some of those more challenging moments.

Mum has also been prescribed Trospium to help with bladder sensitivity and this seems to stop the need for multiple night time trips to the loo, though now she wears a pad at night and is in a profiling bed with the sides up so she would struggle to get up anyhow, but the pad is often dry in the morning.

These hot nights don't help with sleeping either, have you a fan you can put on low in his room to help with air circulation?

[doglington]

As well as lack of sleep it's the relentless stress and responsibility. It was only after Chris died that I realised what a heavy burden we carry all the time - and for years.

You're doing well. Love from Jean x xx

[Unicorn2022 in reply to doglington]

Thank you Jean. It is the disease, it’s so cruel and I fell so helpless that I’m not able to help craig xx

[richsanta]

I am so happy you posted your frustrations. Because I m in the same boat. I pray every night for patience, some days my prayers are answered,but not always. I will keep you in my prayers, we sure don't need another issue to deal with feeling guilty, we are only human. Connie

[Unicorn2022]

We are only human Connie. I count to 10 before I go into his room now, just time to be calm. I know that if the roles were reversed Craig would be so patient but there would never be any food in the fridge or tidying up done 😂😂

I am having a day off work today so just sitting and chilling

xx

[MWLE]

Talk to your doctors about options. Melatonin may help initially if he isn't taking those already. You want to give it to him 2 -3 hours or sooner before bed time.

Also look at Magnesium Glycinaate and L-Theanine to help him relax.