Hi all i will call myself Lil . My husband was diagnosed with Parkinson’s about 3years ago and i am finding it very difficult dealing with it . He gets very frustrated and angry as every thing he used to be able to do he can no longer do . This includes reading driving drinking going for long walks going to the gym. He has become incontinent and short term memory is going . He now has difficulty using the tv remote and using his credit card . I have to constantly check on things like taking his medication checking his pad has been pulled up properly that he has his keys when he goes out wiping up leaks in the bathroom which i have found him using face towels to do it . All of these things i don’t mind but i do find him constantly shouting and swearing at me to just leave him alone and let him sort it out . When i have tried to do that it has resulted in him missing his medication or taking 2 lots together. He has a reminder on his phone and a pill box with all the times on . He keeps telling everyone she never stops nagging at me . I just find this so hurtful as my whole life has been turned upside down trying to make life as nice as I can for him. He has had several falls and sometimes does not put the light on on the stairs at night these are the sort of things i either remind him to o or do it for him. Instead of loving each other in this difficult time we are constantly arguing and I know that this causes more anxiety and makes his symptoms worse . I am still able to leave him for short periods and go to a art group once a week and yoga twice a week . This keeps me sane and gives us both a break. We go to the Parkinson’s seated exercise class once a week which he enjoys and gives him a lift and we exercise together and go for short walks when ever he wants to. I have had to take on and learn so many new skills like computer and driving and al the finance that i feel exhausted . I just want us to be able to work together to support each other and I know we could still enjoy life and not argue all the time. Can anyone help,
Hi and welcome to our friendly forum, Lil. We’re OK with whatever name you want as long as you know you are safe and accepted here. Our members are very supportive and will be happy to add their own feelings and experiences here.
Taking care of someone with Parkinson’s is challenging, for sure. It’s a big job and often feels like too much or thankless, but we know you love your husband and want to do the best for him. It’s so appreciated. One thing I’ll mention is that we have a special area of the forum for Carers and you find it by clicking on the three lines on the top left and scrolling down. You’ll find many people there with the same concerns that can support you. Our members with Parkinson’s certainly understand that it’s a tough job, though, and will likely weigh in soon.
The most important thing for you to do is to take care yourself. We have a great information page here: Caring for someone with Parkinson's | Parkinson's UK. Take a look through for helpful suggestions.
If you need to chat to someone for advice or support, please get in touch with our friendly local advisers on 0808 800 0303 Monday to Friday 9am to 6pm and Saturday, 10am to 2pm.
:Looking forward to learning more about you soon.
Take care
Janice
Forum Moderation Team
Hi @muscat
I visit here infrequently so apologies for the late reply. I’m in a very similar situation and share your pain. PD/dementia has completely changed the relationship with my wife and we have been more like patient/carer than wife and husband for some months. My wife has made false accusations of domestic abuse/ affairs etc etc over the years and I found these extremely hurtful even thought I knew it was the illnesses that were doing this. Folk will tell you not to take this personally but to see the person you have loved for the majority of your life say these things is very difficult to take.
I found the strain of looking after my wife crept up over me over a period of months to a point where it almost broke me. I was constantly tired because we had two years of broken nights followed by days where I didn’t have a more than 30 minutes to myself… We didn’t leave the house that often and my wife needed someone to sit with her whenever I needed to go out by myself.
My wife has been in hospital for 3 months and will shortly be discharged to a care home. It is heartbreaking but it is the best outcome for us both and also our children who were concerned about how we would both end up such was the strain that PD imposed on both of us.
It is important for you to take a step back and try to think about what you need out of life. Like me it might be that you realise that however much you might want to help, and no matter big the guilt is, you are not the person that your husband needs right now. He might need 24/7 care from professionals and this might enable you to re establish your loving relationship with him.
I wish you the best of luck.