Differing behaviour at home than elsewhere

My husband has Parkinson’s and some dementia. Physically he is quite able and has some short term memory issues. When out or with other people he behaves almost ‘normally’ but with me, his wife, at home he is really difficult, uncooperative and does seemingly ‘stupid’ things. When we see his consultant and he tests his walking he strides off down the corridor and the consultant says, not much wrong. At home he shuffles and bends forwards and stumbles. It almost seems deliberate. This is just one example. I am beyond frustrated. He goes to day care twice a week and they say he acts perfectly ‘normally’there. What is going on ? Surely if the dementia and physical symptoms were real he couldn’t turn it on and off as he comes into the house.

Hello Dylax

I could have written your post, sounds exactly like the situation here. My OH doesn’t have a dementia diagnosis but his cognitive issues have a huge impact on our daily lives, which he denies, and his motor symptoms are described as ‘mild’ although his balance problems are a nightmare away from clinic and he has already fractured one hip (which he insists is unrelated to the PD).

No solutions but I understand your frustrations only too well. I do suspect at times that my husband will turn out to have DLB rather than Parkinson’s but it’s only semantics. One thing I have realised though is that his walking is much better when that is all he’s concentrating on and he says he’s aware when people are watching him so no surprise he walks more normally. It’s worse if he’s trying to do other things simultaneously which make his poor coordination worse.

I doubt your husband is putting it on - I suspect the pressure to “be normal” is off when he gets home so he can relax. Hard on you though.

Ditto. Not quite as extreme but definitely marked difference at home. The stupid comments can be very grating. The constant asking what I’m doing and where am I? Leaving doors open - from fridge to cupboard - is that another one,? I try to be patient but I’m only human. Not especially well myself either.

I completely understand the frustration this illness causes. I have the same feelings. My husband was diagnosed nearly three years ago. He has cognitive issues too At the moment he has a cold and chest infection. This is causing him to be very muddled and talking jibberish Well I think it’s the cold which is causing it. Does anyone else have the same mind deterioration when they have a cold? Last year he had flu even though he had had the vaccination He was hospitalised for one week and it took weeks to get back to some sort of normality. He is waking me up during the night Sleeping daytime too. Not much of a life for either of us. I feel at my wits end and not coping too well It’s awful to see my once capable husband turn into the person he is now I feel so alone

At any appointment, neurologist or memory clinic, my OH ‘performed’ much better then they did at home.

Hi Caterc,

Welcome back to the community. We’re so sorry that your husband is unwell and you feel alone, things sound very tough for both of you.
If you need a chat or support to help you cope do feel free to call our Helpline for advice on 0808 800 0303 from Monday-Friday: 9am-6pm and Saturday: 10am-2pm. You can also email [email protected]. We hope your situation improves soon.

Best wishes,
Moderation Team

I’ve just joined this forum. This is the first post I saw and it is so helpful to know I’m not alone in this. My husband too is much better out/ with others than when home alone. I put it down to the monumental effort it takes to live with the disease and that he can’t put the full effort on all the time. When it’s just us he can let go a bit. So I definitely don’t see it as deliberate. I find it sad that he can’t do it for me. But recently I decided to tackle it by arranging a night away in a local hotel together (we cycled there as he can still cycle, though not drive and I felt if I drove us that would spoil the ‘date’). He totally rose to the occasion and we had a really nice relationship affirming time. So I try and accept it at home as a kind of necessary relaxation of effort to be ‘normal’ in public but after the ‘date’ success, one decided to organise more things like that. I feel for you though. It’s so hard.

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Hello Kath and welcome to the forum. I understand completely & try to do the same, make the most of the good times. Though I have to do all the planning now, we build in regular ‘dates’ and it helps.

I would like to add a positive note, but sadly my husband is showing definite signs of dementia - he has displays of temper and violence and today he was in kitchen - screamed and ran at me to get out and I did! Then he asked me if I am on drugs as my mood keeps changing - sadly it is his mood that changes he dies lots of this ‘transference’ of behaviour. Also he has started on about people talking in the night (as quiet as a grave around our way) again. I don’t think he is safe to live with and I am so worried about the future.

Hi, I am so very sorry to hear what is happening with you. PLEASE. PLEASE. Call your Parkinsons nurse if you have one or the Parkinsons help line and explain exactly what is going on. You need to be safe and your husband needs to be safe too.
My husband has not long been diagnosed so I cant say I know what you are going through, I can say I am worried for you .please get help.sending love

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Hi @autumnlady,

I’m so sorry that you’re going through this and it’s completely understandable that you’re feeling worried about the future. I strongly agree with Wanderer, please contact your husband’s Parkinson’s nurse as soon as possible for their advice and support on this. To speak to our on call Parkinson’s nurse, please give our helpline a call on 0808 800 0303 and one of advisers will arrange for our nurse to call you back within 24 hours.

I hope you find this information helpful.

Best wishes,

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He no longer has a nurse. All blew up in 2017 when he had extreme OCD. Useless in an emergency and somehow she just faded away. He has no support, GP visits limited to meds 6 monthly check only. Neurologist about a year ago said she would speak her superior about extra meds but nothing came of that. I give up on trying to get help spend frustrating weeks on this a few months ago. Supposed to get carer come but that never happened. Meanwhile getting physically and mentally.more challenged.

Reah just found your message. Trouble is trying to make a call out of his hearing impossible. He is already paranoid accused me of sending emails about him (to heaven only knows) and saying I keep a journal about him.

Hi autumnlady,

I’m really sorry to hear that you’re having such a tough time at the moment, it sounds like a really difficult situation to have to cope with. I’ll pass your reply along to Reah to take a look at in the morning, but I also wanted to say that if it might be easier to email, you can get in touch with our helpline at [email protected]. We also have other contact information here: https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers.

Take care,
Moderation team.

Hi @autumnlady,

My heart really goes out to you, it sounds like you’re going through a rough time. I agree with Min’s advise, send our helpline an email and one of our advisers will get back to you as soon as possible.

Do take care.

Best wishes,

There is a lot of you in your sharing. Parkinson’s will attempt to destroy the fabric of any relationship that it can. Have you tried to discuss these issues with him - you may find a hurting man. Sadly it is always about the pd sufferers that get the attention. Brace yourself dear it gets a lot worse. Ask me i have fought thus despicable illness since I was 35

Hi autumnlady.

I’m so sorry to hear what you’re going through. You sound just like my mum. It is so very hard at the moment with getting mum some rest away from dad with his delusions aimed at her. Dad is currently being treated in a psychiatric hospital. Mainly because we couldn’t get any other help for him. I believe there is a Parkinson’s advanced symptoms unit in teeside . I dont know where you are (we are not in the locality) but if you are perhaps you could contact them. They have mental health professions with Parkinson’s professionals treating these difficult symptoms. Might be worth a go?

Hi. Sorry to jump on the post. My dad has been ill for nearly 30 years and is currently experiencing delusions aimed at my mum and has been sectioned because of his anger. Any experience/ advice as to who could help us currently? It’s been a battle with his Parkinson’s team. I’m looking for advice of what to do now…I guess what I’m asking is how can it get worse than this?

Hi L04,

Very sorry to hear about what you and your family are going through at the moment. We have lots of information about hallucinations and delusions in Parkinson’s, and what can cause them, on our website: https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

You may also like to contact our Helpline as they’ll be able to offer professional advice on this subject. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team

Thanks. I have done multiple times but I don’t think there is anyone now having contacted anyone I cab. Appreciate the message though. Lisa