I'm new to the forum but have been reading threads for a while for some help and just to know that my family aren't alone.
My Dad has Parkinson's. He was diagnosed about 7 years ago at 52 years old. He's been declining more and more recently and Mum is really struggling to cope. I'm trying to help and support them but I live a few hours away and just don't know what I can do. I'm wondering if anyone is in a similar situation or has Parkinson's or is the partner of someone with it, and can offer some advice of what I can do to support them both.
Dad was made redundant a couple of years ago and was unable to get another job (likely due to his Parkinson's) so they are struggling financially and mum is working really long hours to bring in the money to pay the mortgage. She also feels like everything else is falling to her...Dad takes a long time to do everyday tasks now and he has no motivation at all. He was diagnosed with depression a little while ago too. Recently Dad has started to get confused, forget where he's put things and says strange things that don't make sense. It's really getting to Mum and she can't cope. Each time I call, Dad says everything is fine but Mum is in tears. Even things like dad's PiP assessment didn't go well as dad said he can still do everything including driving but in reality he can't. Some days he can't even work out how to open a tin of beans. This means they aren't getting the financial help they need and shows that Dad is possibly in denial.
It's not Dad's fault and I can't begin to imagine how hard this is all for him. It upsets me to see them almost at war with each other and not working together to keep their relationship and make their daily lives work. How can I help them both? I worry Mum's going to have a breakdown, neither of them are getting the support they need and their marriage is going to break down.
Any help or advice would be hugely appreciated. Thank you.
Hi Lightbulb, sorry you are having such a worrying time. You all certainly need some help and support. Has your Mother seen her doctor, sometimes carers neglect themselves and the stress of caring can cause all sort of problems. The doctor should also point them in the direction of help and support.
Also, if practical, contact the local Parkinson's group, they are a great source of support. The Parkinson's helpline may also be able to help.
My husband has PD and talking to other carers helps me, hopefully we all help each other.
hi Lightbulb, this is rotten for all of you and I don't think there's an easy or quick answer. Flo's right: a local Parkinson's group could be a help. Does a specialist nurse look after your father, and could you ask them for support? You could find out what support services there are for family carers in your area - ours here are quite good (my 88yr old mother in law lives with us, so I see caring from both points of view). I think the key will be to find someone who can look at the family problems all together - money, and health, and relationships, and caring . . . and above all, recognising that help is needed across all those areas. The local Citizen's Advice would be my best bet, and of course as Flo says the helpline here.
But above all, keep caring yourself, as you clearly are doing: your support and action will be of more help than your parents will realise. PS: "caring" is not the same as "worrying": it's much more difficult for a start! But if you can find some practical moves to make, I'm sure that will help you stop worrying as well.
Your mother should get a Carers Assessment probably from the Adult Care Team. Age UK would know exactly which local authority agencies do them in your area.. As of April next this is a statutory obligation on the local authority by the government so as to look after unpaid carers and their health and wellbeing. and can be done whether the cared for person admits there is a problem or not. This should certainly get you advice, signposting to appropriate services and help in planning what to do for the best. In spite of the cuts, your mother might also be able to access financial help. The details vary from county to county so I'll leave it there .
Thank you so much for your replies Flo, Semele and Eileenpatricia. I really appreciate it. Mum and Dad have started attending their local Parkinson's UK group so I'll encourage them to make the most of the time they have there. I will look into Citizens Advice and the Adult Care Team so thank you for this advice - I hadn't thought of these at all. They did have an Age UK person out to them but they weren't very helpful. Maybe they were having a bad day or my parents were just unlucky with who they had out (or maybe my parents weren't asking the right questions or saying the right things).
Mum is struggling with looking things up and even coping with things like phone bills as a lot is online nowadays and she doesn't use the internet. I'm going to visit soon to try and teach her and see if there are some computer lessons in the area she could go to to get some confidence. So the Helpline might be a really good place for her to try so she gets to speak to a person.
I'm sorry to hear your situations but thank you so much for your kindness and advice. I'm going to try and visit once a month/every six weeks as work allows to help out around the house, see my parents and try and take them out for the day either together or individually so that they have something to look forward to. If I take Dad out, it will give Mum some respite. I just feel a bit helpless when I can't be there, but I'll try these different avenues to see if I can sort out some care for them.
