Hi - caring for my husband with PD

Hi all - my name is Helen and my husband was diagnosed with PD about 5 years ago (he’s now 73). We’ve been coping pretty well so far, but he has recently deteriorated somewhat and is now having hallucinations. I didn’t realise they are a recognised symptom of PD. At first they frightened him a lot but he does seem to be getting more used to them. At the same time he has become much more confused and his memory has got a lot worse. Any coping strategies would be very welcome!

Hi Seahorse,

Welcome to the forum. We hope you find comfort and guidance amongst your fellow members.

Have you seen our page on hallucinations and delusions? If not, it can be found here > https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

Our helpline is also available on 0808 800 0303 if ever you feel like you’d like some more advice.

All the best,
Moderation Team

My husband was diagnosed a long number of years ago , he started having hallucinations about 4 years ago, of varying degrees at one time so bad was hospitalised to be stabilised, he is also suffering from dementia, he is age 73 years.
How do you cope? I think find out as much as you can to understand what is happening to your husband, this is Parkinsons . It still surprises me just how many people both with and without Parkinsons do not know how many symptoms this terrible disease can have… .
I talk with our Parkinson`s nurse without my husband to discuss symptoms and where we are at , it is also useful if you have a carers support group near you , you will find you are far from alone.
Hope you find this useful

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Thank you Agnes - you’re right, I need to do a lot more reading than I have done so far. I will also investigate a carers group.

Been down this same route! Husband diagnosed with Parkinson’s 5 years ago and then dementia 2 years ago with dreadful hallucinations. We struggled with very little support and information until I discovered Hospiscare. Their nurse put us in contact with an Admiral nurse who has been the most amazing support. She is very knowledgeable about the illness and effects of medication. She is also always contactable by email and we can have face to face sessions when my husband is at day care. I have found this very helpful in understanding what is happening and more importantly how to cope. Obviously there is no cure but the situation can be more manageable with good support.
Just wish you all the best!

Hello Seahorse.
I have just joined the forum too, my husband has hallucinayions during the day and sometimes at night. During the day I ask him calmly about his hallucination and ask him to close his eyes, relax and know that he is safe with me, We are in our own home, you are in your own chair and everything is fine, Open your eyes now and I’ll make a nice cup of tea. It works for us. If his Hallucinations are bad, as they sometimes are, I just have to pacify him as best as I can and talk him out of it…and make another cup of tea. :neutral_face:

Thank you, mj1. I will certainly investigate Hospicecare - I haven’t heard of them, or Admiral nurses. We have a neurological nurse but she’s very busy and we can’t always speak to her when we would like to. Thank you for your good wishes :blush:

Hi Molly3, thanks for your help and advice. My husband is getting used to the hallucinations and doesn’t find them so frightening now, but your solution sounds great (though unfortunately he doesn’t drink tea! I know, unimaginable, isn’t it :roll_eyes:). It would probably have to be a glass of wine :joy:

Thankyou Seahorse,
Hospiscare is the name o four local hospice charity, you may have a hospice in your area under a different name, worth looking. Admiral nurses are funded by Dementia UK but operate from various places, they are not NHS. You could try contacting Dementia UK to see if there are any in your area. They are enormously supportive both to the patient and carer.