I’m looking for advice if possible, my ex husband was diagnosed with early onset parkinson’s 1 year ago, we have been separated for 8 year and have 3 children.
They go to his house twice a week overnight as a full weekend was too much given the current circumstances, it has got to the stage now where I am questioning if its safe for them to go, the house is dirty and mouldy, causing my daughters Asthma to worsen on her return, they don’t do anything when they are there just sit inside.
I want to help him but he doesn’t want my help and won’t acknowledge there is a problem. I thought it would be healthy for him to maintain some kind of relationship with the children and for them aswell which he does but they are not really keen on going.
Ive tried to get the children involved in helping him around the house but he’s not keen on letting them, they are 11,14 and 15.
I suppose I just want to try and maintain a healthy relationship for them but can’t really send them to filthy house, can anyone advise me on how to care for someone who doesn’t accept there is a problem , we don’t talk about medication or how he is getting on physically but I can see he is slow and struggles. He is still working and driving so must be capable.
He has no family or friends he can call upon for help, they all live too far away, although I am not his carer, I feel I have some kind of responsability towards because he is the children’s father and I do what I can for them.
I know there is no solution, I just wondered if anyone could help or have any suggestions.
Welcome back to the forum.
I’m glad you’ve come yo us for help with this situation and I admire you for trying to help your ex-husband. I know a lot people with Parkinson’s have trouble accepting help around the house, especially when they’re used to being independent and I’m confident that many of our members can relate to this.
There a few ways that your ex-husband can get help around the home including equipment living aids to make it easier for him to get around. There 's more information on equipment living aids here: https://www.parkinsons.org.uk/information-and-support/equipment-living-aids-and-technology
An occupational therapist can advise your ex-husband on this and safety in and around his home.This can help prevent falls or other injuries and help you manage day-to-day activities - I’d strongly advise for him to contact his GP about arranging an appointment with an occupational therapist .
He could also look into care services to help with day-to-day tasks - his social services or social work department - or health and social care trust in Northern Ireland - has a responsibility to assess his needs and arrange services that can help you stay in your home.
A care manager or social worker will carry out a needs or care assessment.This will usually take
place in the home and will take into account your personal needs and your social and cultural background. If they see you need support, they will draw up a care plan.
We have more information on this via the Parkinson’s UK website which you can find here: https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes
Lastly, for more support on this or if you’d just like to speak to someone in more detail about this, please feel free to give our helpline a call on 0808 800 0303. Our team of advisers would be happy to have a chat with you about the best course of action for your ex-husband.
I know I’m kind of prickly and I know it was probably just meant as a reassuring comment but I kind of resent the generalisation that a lot of people with Parkinson’s have trouble accepting help - it’s a big statement and I wonder if there’s any evidence for it?
Poppop690 - Your desire to support your ex-husband is great and renews my faith in human nature but I wonder why his condition seems to have deteriorated so rapidly when he has only been diagnosed for a year and must be fairly young still.
I know that Parkinson’s is unpredictable and highly variable but just as an example, I have been diagnosed for over 8 years, my house is spotless and I held a very responsible job in the education sector until a few months ago. I have to wonder if his medication is being correctly managed - I know nothing about his situation so this is really just a leftfield thought but is it possible that low mood or mental health needs are an issue because lack of care of oneself and one’s environment can be key indicators of this.
One of the issues that people I talk to who are living with Parkinson’s are struggling with at the moment is lack of access to healthcare and appropriate support for medication management as well as lack of access to mental health services.
I think Reah mentioned this but if your husband could get himself to his GP or Parkinson’s specialist nurse (if he’s lucky enough to be able to access one) to talk about his current situation, medication regime and management and what he would like then I think that would be a really good starting point.
Hoping you manage to move things forward and get the best outcome for your children, it’s a hard situation.
I’m sorry you feel that way. My statement wasn’t intended to come across as a generalisation and I certainly wouldn’t have made the comment if I didn’t have evidence of this - most of which I have gained anecdotally since I’ve been at Parkinson’s UK both on and off the forum. As you guessed, I shared this information to provide reassurance an support.
However, thank you for you observation, I always welcome feedback and thank you for the good advice that you’ve shared with Poppop690.