Unable to cope

Hi my husband has Parkinson’s he was diagnosed 18 months ago but we think he has had it for some time and obviously covid made getting medical treatment and advice was impossible.
He is very depressed but will not take his prescribed medication for this and is also very hit and miss when he takes his Parkinson’s meds. He is becoming increasingly angry and aggressive towards me and I don’t know what to do as every time I suggest he contacts someone for help it sets his anger off again. We are away on holiday at the minute and I feel very isolated and alone. I just found this forum by chance and I would welcome any help or advice please

Hello AnnE1
I read your post this morning but unfortunately do not have a lot of time to reply today. However I wanted you to know that your story is not uncommon. In fact there was a post just the other day that could almost have been written by you and I give a link to that because I think much in the replies to that post, including my own, could apply to you and maybe give you a starting point.

Hopefully others will stop by to give you some help and support and I will come back to you asap. I wouldn’t normally reply quite like this but I am aware some hours have passed since you posted and I didn’t want you to think no-one was going to reply given the emotional turmoil you are in at the moment. You have come to the right place for support even if it is a liitle slow sometimes. Take a look at the link and replies.
Speak again soon.

Hi AnnE1,
I am so sorry to hear you are going through this, his behaviour is simply unacceptable, I could understand it if it happened occasionally but it seems as if it is virtually constant.
We all have PD and we go through various mood swings and depressions however, he seems to be blaming everyone and anyone for this feeling and that it is all everyone else’s fault.
It is simple, people get PD, through no fault of their own, or for that matter no fault of anyone else no matter how much he curses anyone or anything including the “gods”
It may sound harsh but that are the facts.
You really do need to talk to someone, specifically someone who has PD, who can intervene in this situation, even if you ask them to come to your house to talk to him.
You cannot go on like this, it will destroy you mentally and physically.

Thank you for your support and listening to me it’s just so hard at the minute I am just blamed for everything
When I get back to the UK I will try to contact the help line at the try to get support for myself as this is killing me.

Hello AnnE1
Sorry not to get back to you before now. I just logged on and was going to check if you had posted a reply. Contacting the helpline is I think a very good thing for you to start with, but as you will have read, you may need to persevere to get through but do please keep trying. I will repeat what I said in the link I gave because it is important. You are entitled to be treated with respect and you do not have to tolerate your husband’unacceptable behaviour towards you. The helpline will help you find ways to help you find the right support. Please let us know how you are getting on.

Hi Tot
Thank you for getting back to me I know you must be so busy but last night I was concerned for my safety. My husband had a big tantrum and was very aggressive towards me and controlling he looked the bedroom door and wouldn’t let me have access to my belongings
I have fortunately been able to get my passport money cards and a few clothes and he has stormed off back to the UK
I have told my adult children about this and they have encouraged me to stay here in a safe environment as I feel he will try to kill me if and when I return home
My son lives in America and I am more than welcome to stay with him for a few weeks
My husband has thrown out my clothes and possessions in the past so I am expecting the same again
Sorry to burden you sir with this but I suppose it just helps a little bit that I can have an adult conversation without the teddy thrown out of his pram

You are not being a burden Anne1 but I am a bit helpless to help. However if your husband has come back to the UK hopefully right now you are safe. You need some proper professional help. thst’s for sure. Hopefully someone on the forum is better placed than I to help. Please keep posting so we know you’re alright.

Anne1 I’ve just looked on the Parkinson’s UK site and they give these numbers. Maybe something here will be useful to you

If you’re finding it difficult to cope and need emotional support, there are helplines and services that can provide help and support, at any time.

  • Samaritans provide confidential, emotional support, 24 hours a day, 365 days a year. Call Samaritans on 116 123, or email [email protected].
  • SHOUT is a free, confidential, text support service available 24 hours a day. Text SHOUT to 85258.

In a medical emergency, always call 999.

For urgent non-medical advice you can contact:

  • NHS 111 in England, Scotland, and Northern Ireland
  • NHS 111 or NHS Direct 0845 46 47 in Wales

Thank you Tot I feel safe here in Greece it’s a place I have visited many times so I will just try to relax and enjoy the sun while I plan my future. At 66 it’s not easy to start again but I keep telling myself that I deserve to have a happy life too

I am so glad to hear you say that AnnE1. Enjoy the sun and start looking forward. You do indeed deserve a happy and peaceful life.

Hi AnnE1,

Of course you do, there is no question about that, I’m just so sorry you had to go through all you did, it should never have happened.

As you’re in Greece, I’m not sure if you ever saw the movie Shirley Valentine, if not please do. It will give you a few laughs, and even maybe “ideas”.

Hi AnnE1
I am really sorry to hear of your troubles and sincerely hope you can keep safe.
I did go through a similar experience with my husband (74) after an operation that he had which really messed him up mentally. So much so the Police had to be called and numerous months of problems ensued. We are still not back to normal and will never be - as I now just class myself as his ‘carer’ and not his wife.
He really does need to take his medication at regular intervals for a few months before (hopefully) the situation will calm down.
In the meantime, keep yourself safe…

pd hits a lot of specific places in the nervous system. one example is the amygdala. the amygdala is involved in fear and it seems that damage to it can lead to mischaracterizing stimuli as threatening. so maybe your husband experiences many more things as threatening. if he was already a bit suspicious and confrontational 20 years ago, with pd it might get much worse.

damage to the amygdala also seems to be involved in “parkinson’s face” which can cause other people to think the pd victim is more angry/upset/sad/etc. than they really are, which can lead to arguments which can then lead to real anger. (this particular problem has happened to me many times. it’s quite upsetting when people wrongly think you are upset.) it does not sound like this is what is happening here.

the comments above on the amygdala are just examples. pd has lots of ways it can mess with emotions and motivations.

for me, the treatment for these kind of problems is: lots and lots of meditation, multiple anti-depressant anti-anxiety medicines, exercise, attention to getting good sleep, etc.

if your husband is unable to see for himself that his behavior is at least partially due to brain damage from pd and that it is important for his own future and the future of those he cares about to take urgent action to treat this vigorously with lots of different methods, you might have to get quite clever.

i’m sorry i don’t have a proper solution for you, but maybe some relevant information can help.

The meds make ALL the difference. Parkinsons takes away something very important to your husband and the meds give it back. My husband sets an alarm on his phone for 7 times a day to make sure I’ve taken my pills on time. It really is the start of taking control x

Hello AnnE1
I just wondered how you were getting on. I hope you have managed to get some things sorted and that you are ok.

Hi anne1i understand what you are going through i was diagnosed 5 year’s ago they put me on these patches for my Parkinson’s and I was the same with my wife so I stopped taking them after six weeks so i have not seen any body for two years until this may put me on another medication now I’m okay at the moment on the new tablet so hang in there it’s maybe he needs to change the medication