Hi my dad got diagnosed with Parkinson’s over 5 years ago. He is getting progressively worse with full body tremors and shakes. His memory is also fading since he has been diagnosed with dementia also.
My mum is his main carer. He is 73 and my mum is 70. Due to his forgetfulness she gets really frustrated to the point she shouts at him. I’ve told her she needs to deal with this in a different way as he is only going to get worse.
She is not coping very well even after all the years he has been diagnosed.
My 12 year old daughter was there this afternoon when she shouted at him which made her very upset.
My mum is a very proud woman who will not ask for help.
Any advice will be gratefully received
Hi JoJo,
We are very sorry to hear of the difficulties your family has been facing of late. Before you hear from our lovely and supportive community, we wanted to be sure you were aware of the resources we can offer. Please have a look at our website, as you’ll find loads of helpful information there, along with archived forum discussions. This would be a good place to start, and something to share with your mum: Caring for someone with Parkinson's | Parkinson's UK. We also have a free and confidential helpline staffed with advisors who can offer a range of services, for your father and your mum and the rest of the family. You can reach them on 0808 800 0303.
We hope this helps, and please accept our warmest welcome,
Jason
Forum Moderator
Hello Jojop77
I would encourage you to follow-up the advice given by jason.mod at least as a start point for good information.
It is never easy to reply to such posts because on one level what is there to say. Your father’s Parkinson’s complicated by dementia is progressing and will continue to progress. Your mother is struggling to cope but is a proud woman who won’t ask for help. It is not hard to understand therefore, why you are worried for their future and indeed that of your family since your daughter was recently upset by what she witnessed. There are simply no easy answers, however I offer a few thoughts for you to consider which may or may not help but perhaps enable you to see things a little differently. Please be aware this is only my view based on limited information so may not be accurate but I hope at lease something will resonare with you.
First you probably accept your mother shouting at your father is probably born out of frustration. However it is likely to be more complex than that.
Guilt may well be a big issue, even if she doesn’t say so - guilt for shouting, guilt for getting frustrated, guilt that she can’t cope ‘better’- these sorts of situations are rife with all sorts of guilt trips. Closely linked to guilt is resentment - that she has no life of her own, that she is caring for a man who in many ways is no longer the man she married, resentment because she sees herself stuck on this treadmill with no way to get off. The linked to both of these is grief, exactly like a bereavement - your father is still alive but the man your mother married is increasingly difficult to see. All these sorts of thoughts and feelings, which she may not admit to, may well be at least in part be contributing to the frustration.
There are two things I will say quite bluntly here. It’s not what most carers want to hear but it’s no less a truth for that and you do need to be aware of it. Not everyone is cut out to be a carer or at least be a carer for ever and a day. And although a large percentage of the caring role is undertaken by family members and there is an unspoken generally held assumption that families will take on this role, there is no law that says they have to.
So where does that ,leave you. That depends largely on the type of relationship you have with your mother. Can you say it like it is, shooting from the hip as it were, or do you need to tread carefully drip feeding ideas, bits of informaton etc. It may be that one or other of these approaches may help your mother to understand better what is happening and her feelings and make her more open to the idea of help.
It is not an easy path to navigate but it can be done. Start small - if you can get her to accept some help is needed - something like maybe getting someone to sit with your father so your mother can go out and have a break.
Finallly, if you can get her to agree to their having a proper assessment for them both (your mother would be eligible for a Carer’s Assessment in her own right) she may be more open to accepting help if it came from a professional rather than a family member. You need to contact their local coincil Adult Care Services to refer for assessment.
None of this may be practical for you or even applicable to your circumstances but it may perhaps get you thinking more broadly about what is happening between your parents and give you a different way forward.
I wish I could offer more than a lot of maybes but I hope it helps a little anyway.
Tot