Spinning plates and they’re breaking

[KElizabeth]

My partner has early onset dementia which has progressed at an alarming rate. Although only diagnosed for just over a year we are at the 24/7 care need. He’s only 62 and I’m much younger.

Last night was the last in an endless line of seriously broken nights culminating in a ‘wander’ and a frantic drive around town looking for him. He thinks I’m selfish for a) not letting him out and about in the small hours b) needing any sleep myself.

Despite having an excellent social worker, as varied a programme of activities as anyone could hope for, as much exercise and activity as possible, I’m at my wits end with his sleep patterns (or lack of). Between my job (teaching) and being his carer I’m pretty much at the end of my energy elastic. Can anymore survive on less than 2 hours a night?

All the usual supports are in place including a short respite break in a few weeks, but I’m on my knees physically and emotionally. The lack of sleep and stress is relentless.

This morning all I can see is another day ahead chained to a situation I didn’t choose, frustrations galore and another night ahead of nocturnal battles.

Sorry, but just needed to vent and we all know we can’t talk to our partners about any of this! 🥲

 

[sapphire turner]

Oh wow KElizabeth that sounds awful and changing so fast too. I can’t imagine how you are managing to work as well as all of this madness. It sounds like you are going to have to jump up and down to bring that respite care to closer, as soon as possible. It is hard to shout loud enough for help when you are utterly exhausted. Have you got anyone to help you make these calls? You may need to say you will have to leave and he will be vulnerable and a danger to himself on his own.
If you don’t save yourself you will both go down in flames. Do look after yourself, sending love ❤️ xxx

 

[SeaSwallow]

Hello @KElizabeth i am so sorry to read about your husband's dementia, he is so young for you both to be going through this. Your first paragraph is so telling when you say - we are at the 24/7 care need. No one can survive on only 2 hours sleep per night and because of your husband's dementia he will not understand that you need enough sleep to be able to function as a carer and also in your job.
From everything that you have said I think that the time is coming that you need to think about full time residential care for your husband and should be discussing this with your social worker. It is very concerning also that your husband has started to wander at night - this is definitely a red line that also suggests residential care.
I am attaching details of the Herbert Protocol which is in operation through most police services. You complete the form which gives details of the person with dementia, this can help the police to trace a person if they go missing.
In the meantime please keep posting on the forum, either for advice or just to let of steam, you will always find someone to listen to you.

https://www.met.police.uk/SysSiteAssets/media/downloads/central/advice/herbert-protocol/herbert-protocol-form.pdf

 

[KElizabeth]

Thank you for the replies. I have been wary of using forums. The cynic in me resented spending what little time I have talking about D online when it clearly dominates every aspect of life already, but your advice is thankfully received. I completed and filed the HP last year. I am also lucky (if you can call any of this lucky) in that we have mainly supportive folk around us and am conscious that not everyone here has that. We had to hit crisis very quickly to get that though. None of it changes the utter despair you feel after a year of broken nights and only the prospect of worse.

The guilt we feel, the turmoil between protecting them, your children and yourself. It’s a lesson I wish I hadn’t had to learn.

 

[KElizabeth]

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Oh wow KElizabeth that sounds awful and changing so fast too. I can’t imagine how you are managing to work as well as all of this madness. It sounds like you are going to have to jump up and down to bring that respite care to closer, as soon as possible. It is hard to shout loud enough for help when you are utterly exhausted. Have you got anyone to help you make these calls? You may need to say you will have to leave and he will be vulnerable and a danger to himself on his own.
If you don’t save yourself you will both go down in flames. Do look after yourself, sending love ❤️ xxx

Thank you. You’re right, he can’t be left and the nightmare of balancing work and this is exhausting. Facing classes of teenagers when you feel so tired is tough. If nothing else, I’ve realised recently that I’ve been in denial. It’s not a case of ‘if’, it’s ‘when’.