Here we go again

Me again, after another event ending in hospital care, police being involved as hubby became aggressive, threatening and saying awful things yo me, I insisted I couldn’t cope any more, he asked to come home, how could I refuse it is his home and I don’t have P.O.A which he gave to his daughter who turned her back three years ago, along with her sister who is executor of his Will. Now we are back on slippery slope as his behaviour wanes again from rational to completely irrational. Please excuse my moans but no where else to share my frustrations and sadness. My family - who are not his, have run out of patience saying I should leave,easier said than done, especially with Covid around and I’m still recovering from extremely bad pneumonia, have T2 diabetes and CKD !

Hello, sometimes I think carers suffer almost as much as PD sufferer. Don’t get me wrong it is a terrible disease, but mercifully for him it doesn’t seem to trouble him, but the constant fallout is pretty tough. My husband dxd around 15 years and our ups and downs could fill a text book! I have made many, I’m sorry to say, moans on here but at minimum it is a place to share frustrations. Hubby has, constant bedtime hallucinations saying he can hear people walking around and talking and has accused me of having people in my room. Sometimes he accepts they are imaginary. But for me, it is his cognitive functions that make life hard - some days he is totally rational, but more often these days his rationale has gone. Today I got up to find he has broken the microwave by overhearing a croissant and not using a plate, he has taken my washing out of machine absolutely wringing wet and left on floor, putting his washing in, despite the thousand times I’ve pleaded with him not to touch my washing. Now he has dirty washing strewn over the hall, he is constantly messing around in the kitchen, moving things around. I’ve shut myself in my bedroom as it is the only place I can keep control over, away from his manias, he is a collector of wires USB cords and plugs, he has probably a hundred or more collected over years in all kinds of drawers in his bedroom and our living room, yesterday he had them all over the place on the floor, this is a regular occurrence I have no idea why. Three mobiles only uses one but plugs them all in to charge constantly. Two lack Alexas, always charging but never using. His laptop is in complete disarray as he constantly meddles with it and, my son in law sorted it once, but he has tangled it up again, I got so tired of him spending hours trying to access his bank and cursing the machine, turning off and blaming WiFi which is running perfectly, that I bought him a new tablet and set it up for him just a month ago, he rarely uses it though still spending hours on laptop when I look at it, there is nothing of any sense on the screen. Today even his speech is nonsensical, this sounds unkind but it is true. Actually, I think he’s forgotten me as he usually checks me out if missing more than a few minutes, but not today, dreading opening door to see what he’s been doing. As I say excuse my rant, my only form of coping, as yet again I think of my way back to normality. I wonder how much of this is attributed to PK or meds, of if he is just plain . :thinking:

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Hi @autumnlady,

I’m truly sorry to hear that you are still experiencing difficulties with your husband’s condition. As you know Parkinson’s affects everyone differently which is especially hard for people with the condition, but the reality of this can also be hard for carers like yourself and/or loved ones.

The agressive behaviour that you’ve described (particularly as it involved the police) is very concerning and I just want to remind you that we are here to offer you support and I’d be happy to put you in touch with my colleague again who I believe you have spoken to before about your current situation. Please let me know if you’d prefer this and I would be happy to put you in contact with her.

In light of what you’ve described about your husband’s hallucinations and generally erratic behaviour, it sounds like he may be experiencing impuslive and compulsive behaviours which is likely to be side affects to his medication. We have extensive information on this here and here. I would advise that you speak to his GP and/or his Parkinson’s nurse as they may need to review his medication if this is the case.

Do let me know if you wish to be contacted by an adviser and please take care of yourself in the interim. :blue_heart:

Best wishes,

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Hello autumn lady
I wish I could wave a magic wand and make everything alright for you both. I have Parkinson’s but am well aware of the price carers pay and indeed have written on this in some of my posts. Right from getting my diagnosis a major concern of mine is not to become a burden on my family and I have put what measures I can in place to this end. Facing an uncertain future as I am, I am only too well aware that despite my best efforts it may not be enough. That is something I have to acknowledge and live with, and your post reminds me of that fact - not that it’s easy to forget. I hope giving vent to your situation and feelings has helped a little, it’s not moaning and even if it was that’s OK here on the forum, it’s a coping strategy, a release mechanism caĺl it what you will, but essential for your own mental health. Reah has offered some good advice and I would encourage you to follow up on the points she raised. I can’t do or say much that will make a real difference except to say I and other forum members really do care and will always be here to give you a virtual hug, hold your hand, let you weep shout or whatever you need, whenever you need. As a by the by because it sometimes brings at least temporary relief, punching a pillow hard several times or some similar physical 'activity ’ can be a powerful but safe release.
I hope you find peace somehow soon.

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Hi Autumnlady, has your husband been diagnosed with PD dementia? I ask because your situation sounds very similar to mine. I also, had wet washing and water all over the floor, last week, when he emptied the machine while still rinsing! He also managed to tip a shelf full of stuff on the floor while trying to get an apple. My husband veers from being rational to completely not, within a heartbeat. He was diagnosed with dementia 5 years ago and for the first few years medication helped. Not now however. Maybe labels don’t matter, it’s hell to live with, whatever. I am on my first respite break (although it is for my own medical reason). He is in a care home and keeps asking to come home apparently. I feel so sad for him, but I don’t know how much longer I can cope. You are not alone…