I am a full-time carer for my husband who has had Parkinson’s for 10 years and was diagnosed with dementia one year ago. He suffers from frequent UTIs and has also had chronic epididymitis, which led to one testicle being removed. Unfortunately, the infection is now back in the other testicle but the consultant is reluctant to remove it and is trying to preserve it with antibiotics. However, these are becoming less and less effective so the Parkinson’s symptoms are far worse than they would be if he did not have infections almost permanently. I can just about manage him during the day but, at night, he is virtually immobile, although he insists on getting up for the toilet up to six times every night. This is exhausting for both of us and I can’t sleep because I am constantly waiting for the next visit to the loo. It is dangerous because I am 82 years old and cannot support his weight. Some nights are better than others but I would like to know who I could call for help in the night, if needed. Has anyone else found themselves with this problem?
Hi, @Veejay. A warm welcome to the forum. I’m really glad you reached out - What you’re dealing with, with your husband, sounds incredibly exhausting.
Frequent UTIs can definitely worsen Parkinson’s and dementia symptoms, but the most urgent issue here is both of your safety at night. If you’re in the UK, you could contact Adult Social Care via your local council for a carer’s assessment and support review. Or speak to your GP and explain that you’re 82 and physically unable to safely support him at night. They can refer urgently if needed.
You don’t have to cope with this alone. Our free and confidential helpline is also here on 0808 800 0303 if you’d like to talk it through. Our trained experts and specialist nurses can help you think about night support options and carers’ rights.
Sending our love 
Parkinson’s UK Moderation Team
Veejay
You should to contact your local adult social services and ask them for an assessment.
Edit seems Candice suggest the same thing, looks like we both posted at the same time
Johan
Thank you. I have had a carer’s assessment and it was suggested that I get a night-time carer but that wouldn’t help as we only have one bedroom so I would still be woken up by a carer coming into the bedroom to help my husband.
My GP isn’t very helpful and just said to me “You need help!” I already knew that!
Did you have a housing needs assessment from Social Services? We had one a few years ago for my husband (we were in a 1st floor flat and he couldn’t manage the stairs) the housing needs assessment helped us move to a ground floor flat.
As I expect many others on this forum will tell you, you need to be persistent all most to the point of being very annoying when dealing with social services and some GPs.
This sounds incredibly tough, you’re doing an amazing job—have you contacted NHS about night carers or emergency respite, as they can sometimes arrange overnight support.
Thank you,
Overnight waking care in your own home works out more expensive than a full-time residential care home. We couldn’t consdier that at the present time.
I do hope you get some help but in my experience there’s no.help
I’ve lost count of the amount of times people say “ take care of yourself”
How’s this possible. I contacted our GP for Occupational health to call and they said no chance at least for 9 months