Husband was diagnosed about 13 years ago, and is showing all the classic signs of Parkinsons Dementia/Lewy Body dementia, including a lot of aggression, particularly towards me. His Parkinsons nurse recommended a medication review and psychiatric assessment, but he refuses to accept this. Apparently he is deemed to have capacity, and can refuse if so desires. This is having a huge impact on me.
Help!
Hi Nake1, thank you for reaching out to the group. We’re really sorry to hear about your situation - it sounds extremely difficult and we want you to know that we’re here to help you get the support you need.
We would recommend reaching out to our free, confidential helpline which is available to anyone affected by Parkinson’s. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses: 0808 800 0303.
We’re sure that our lovely community will also have some advice for you and we have practical advice on looking after yourself as a carer on our website here: Supporting someone with Parkinson's | Parkinson's UK
Please know that you’re not alone, and we are here for you whenever you need us.
Sending all our love,
The Parkinson’s UK Moderation Team
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Good afternoon Nake1 … I am so sorry you are having to deal with this. Life can be so unfair. Your husband really should take the Parkinson’s nurses advice & get a correct diagnosis.
You do have a few cards you could use, maybe threatening to leave him until he agrees to see a professional.
You say he is very aggressive, is this verbally or physically. You do need to feel safe in your own home.
None of us here know him are not qualified to diagnose dementia or otherwise.
Best of luck.
Steve2
Perhaps a discreet video of his behavior could be obtained and discussed with the GP. ? So his advice can be obtained again discretely so as not to anger your husband.
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It’s so cruel and unfair, I’m sorry.
Are there times when he is easier to talk to than others? If there is a good time, maybe remind him that you have fought this as a team so far, talking, learning, and planning the way forward together. If you do manage to negotiate any kind of compromise, get straight on to the medical professionals and let them know you’re working in a very small window of opportunity and ask them to jump on it quickly. They will be used to hearing that and hopefully act accordingly.
Not sure if that will be any help, The only other advice I can offer is that your safety comes first, always.
Keep reaching out for advice and support as and when you need to, We’re all here for you.
Hi im sorry your going through this it’s very difficult I know my husband has both pd & lbd. I found behaviour very difficult I decided to keep a daily diary. When things got to crisis point for me I rang the Parkinson’s nurse & got to see his Parkinson’s consultant. I wrote a list of main behaviour difficulties & she diagnosed lbd. She said the dairy was a great help. He was given new medication. Unfortunately 18months later he’s deteriorated & in residential care. Good luck
Hi nake,
I like jane who has also replied to you, am going through a similar time with my hwp, the stress on you is intense. I got to breaking point and family intervened to ensure my hwp was admitted for assesment. He was not adverse to this at the time. Without you helping him at home it all falls apart, so its vital you get all the support you can from the parkinsons nurses and gp services. It took me 2 months to get an admission, and he has now been in hospital 3 months, so its obvious it was required. The hope is once in a safe secure environment all the test’s, scans, medication trials etc can be done, to help formulate a plan of care that makes your husbands life better and you also are supported and feel beeter able to manage things. I hope you are a bit further forward with things. I know its a slow process and very frustrating, but keep contacting people and you should eventually get the help you both deserve
Best wishes c
My husband was diagnosed with PD in 2022 and since the beginning of this year has been terribly confused. He sees other people who he thinks are impersonating me and gets very agitated and angry. He verbally abuses the “imposter” as he calls her which is obviously me. He has been worse in the evening after 6:30pm but now it is creeping into daytime confusion. We had a meeting with the advanced PD registrar last week and my husband and I went through all the problems with him. He said to half the dose of 8pm Madopar which hasn’t made any difference yet except the hallucinations are also daytime now. He takes citalopram for depression but that doesn’t seem to have much effect. I don’t have family who can help and I get very down with all of this. We have lifeline installed and I belong to Carer’s association but they aren’t here when he is getting agitated. I sympathise with you.
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Hi Fran, we’re incredibly sorry to hear this. It sounds like you’re going through a lot at the moment - please know that you’re not alone.
If we can help you in any way please do reach out to us. Our free, confidential helpline is available to anyone affected by Parkinson’s. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses if you need support: 0808 800 0303.
We’re here for you if you need us.
Sending all our love,
The Parkinson’s UK Moderation Team