This is my first post here, but beginning to feel quite overwhelmed at home. I’m 29 years old and a full-time carer for my husband who has YOPD and is now 52 years old.
He was diagnosed nearly 10 years ago and so is fairly advanced with the illness. I’ve known him for six years now so I’ve never known him pre-Parkinson’s, however, I’m beginning to get really worried about the onset of behavioural changes.
These aren’t compulsive behaviours but seem to be complete changes in personality. Some days he’ll be really lovely and then others I feel like I’m living with a stranger. He’ll be nasty, controlling, irrational, insulting… To the point where I just want to leave the house, but of course I can’t because there is no-one else here to look after him if he gets stuck. I don’t know if this is typical behaviour of someone with Parkinson’s, whether it’s a drug side effect or the illness itself causing the brain to degenerate. It scares me because not only do I now have the general insecurity and worry of how he’s going to be like physically, but now I don’t know how he’s even going to behave towards me. He can’t see it in himself and often blames me and says I’m being irrational.
Has anyone else experienced this?
Welcome to the forum. Very sorry to hear about what you and your husband are going through at the moment.
We’ve got lots of information and advice for carers on our website, which may be of interest: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
You can also read about potential behaviour changes in Parkinson’s patients, some of which may be a side-effect of various medications: https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviour
We’d strongly recommend you report these changes in personality to a healthcare professional, who will be best placed to advise as to why this may be happening.
In the meantime, you might also like to contact out Helpline, who are able to advise on most aspects of life with Parkinson’s. 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.
Hi piggle. I’m not good at this forum stuff because I tried to send yiu what I thought was a message but it seems I created a separate post! Oh well! I wondered if you’d like a chat as I’m in a similar situation but have a few suggestions for things that have helped us but it’s a lot of typing so would you like a chat? I don’t know how to, or if it’s possible, to send a private message to exchange phone numbers. Anyway, if you’d like to I’m here!
I’m happy to see you being supportive on the forum. I see that you were having trouble sending private messages, just click on a person’s icon picture and you’ll see an option to send a message. I’ve attached a picture for your attention.
I hope this helps and please let me know if you need assistance with anything else.
Hi piggle. Thanks for getting back to me, Im in wales this week so will get back in touch when I’m home and we can have a chat. I look forward to it x
I am sorry to hear about the issues you face. That must be really tough. I have Parkinson’s but no longer have a partner,I agree with others the best thing to do is to speak to a Parkinson’s medical Professional to try and find out why this is happening. It may not be personality change and it may be driven by medication. To solve something like this he needs to know what is happening as well. Sometimes people with Parkinson’s can’t see what those looking from outside can. If you can get through this you need to be able to talk to each other. If you can work out some sort of strategy that may help you both.
Piggle I’m still having trouble with private messages, can you pm me please. It’d be lovely to have a chat. Thanks x