I’m probably not alone. Husband diagnosed after 25 years of symptoms, and delayed by 2 years due to lockdowns. He is now on 5 daily doses of 150mg Madopar, incredibly forgetful, apathetic and sleepy, hallucinates, has false memories,starting balance problems, hates noise, crowds cant go out alone at all. PD and medication conflicts with Diabetes T1 and NHS does not do holistic approach. He seems to have dementia and verbal and comprehension problems. He has toddler tantrums increasingly when he imagines I apparently dont understand, or get angry or impatient. I try not to but he imagines things from the tiniest misunderstood move, expression or word. He’s red faced growling, stamping, hands out like claws. This behaviour now happens most days. I’m scared he’ll go for me and I will be hurt or killed. I cannot discuss this with GP or neurologist or PD nurse in front of him, and I have no idea if I could or should contact them behind his back. I know it is the PD but what can I do to care for him -and survive- when I dont know what he’ll do next?
I would strongly recommend that you contact your GP or your husband’s medical team as a matter of some urgency on your own behalf because quite clearly you need some help. I don’t wish to be dramatic here but it seems to me that your situation is at risk of breaking down and then you are into dealing with a crisis situation - and that is very stressful. However nobody can help if they are not up-to-date with what is happening.
You are also entitled to a carer’s assessment in your own right and you will need to contact your local council about this.
You might also want to try the helpline 0808 800 0303 who may be able to advise you further.
The Parkinson’s may be the root cause, but that doesn’t mean as your husband’s carer, you have to put up with the challenging behaviours he is presenting with on your own. Start banging on a few doors. Make a note of who you speak to and what they say, where possible confirm all phone calls with a follow-up email. My feeling is that your situation is potentially very complex and things may change quite quickly. It is worth having as full a record as you can manage as who said what and when easily gets confused.
You may feel this is going behind your husband’s back but it is about your health and well being as much as his so you have every right to take whatever steps you need to get help for both of you.
Let us know how you are getting on when you can.
Please take care, you are in a very difficult situation at the moment and I sincerely hope you get the support you need sooner rather than later.
I see that you’ve already received some great advice from Tot regarding your concerns. I just wanted to intervene to let you know that I have sent you a private message with some information that you may appreciate.
Thank you both
Thank you very reassuring