Some advice - carer who is not looking after herself


I am seeking some advice. My father, who is 80 and has been suffering from PD for 13 years, has declined in the last 2 years, with multiple visits to the GP and a number of calls to the ambulance and admittance to A&E due to severe abdominal pain, many many blood tests and scans reveal that everything is normal. He is declining cognitively, suffers significant anxiety, is unable to spend much time with others and has become agrophobic.

My step mum (15 years younger) is his full time carer and does everything for him, goes over and above and runs around so that he doesn’t have to to anything at all. I believe that this is an unhealthy dynamic that has resulted in him declining quicker and becoming more helpless. He is rapidly losing his independence and so is she. They are stuck in this co-dependency and he is not interested at all in helping himself. There is apathy, which I know is a symptom.

I am concerned about my step Mum’s wellbeing. She has stopped seeing friends, no longer goes out on her own, apart from once a week to pick up groceries and is no longer able to travel to see her family (she is from the far east). She is isolated, lonely and exhausted.

I am trying to help when I can (I work full time but live 15 minutes away) but she doesn’t like to accept help and would never ask for help. She hides her true feelings from my Dad. She must be strong and says it is “her duty” to look after him. She is not giving herself any time at all and will not leave him for any length of time because he dislikes being on his own and gets grumpy if she leaves him for too long.

Both my brother and I have had open discussions with them both in the hope of helping to relieve some of the burden for her - we suggested the idea of at home respite care a couple of days a week and I gave them details of a reputable service nearby. The problem is that my Dad does not want someone else to come in and look after him and he does not want to spend the money. He became extremely anxious and visibly stressed when we brought this up in conversation. He is so used to his wife looking after him and does not want it to be any different. She does not want to cause him any stress either so this has now gone cold.
The problem is, she is going to have a breakdown. It is only a matter of time. She is not sleeping well, she is visibly stressed and suppressing her feeling and emotions to appear strong for him.

I am feeling stressed and uncomfortable about this situation and am at a loss as to what to do next. I can’t make them do what they don’t want to do, but how can I let this continue? I feel helpless.

As my Brother does not live nearby I feel that this is weighing on me to deal with. But I am not sure what I should do next.

Any advice would be much appreciated.

Hello @LAT,

I wanted to take a moment to welcome you to our community. I hope some of our members will be along shortly to greet you, as well as offer their support and suggestions on what you are going through.

I can certainly understand your concern for your step mum - you made the right choice to post here in search of guidance. Although your dad needs care and assistance, so does she! And it can be quite difficult to help another when you yourself feel that you are struggling.

Since it sounds like your step mum may find it difficult to ask for help, I would recommend (at least to start) that you contact our helpline on 0808 800 0303 and speak with one of our advisers. They are very insightful and will be able to help you find a way to get your step mum the support that she needs. They can strategize with you for both her and your dad, as well as put you in touch with local services and resources that would benefit them.

We’re here for everyone who has been affected by Parkinson’s, so please do not shy away from connecting with us, our community members, and our advisers.

And please do keep posting!

Best wishes,
Forum Moderation Team

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Dear LAT
I just thought I would make contact, as I am new to the forum due to my partner recently being diagnosed. He is determined that I must keep my hobbies and my friends which is lovely but I do understand that this will change as time goes on.
However, that’s not the main reason for my post! Whilst contracting as a project manager I came in contact with Action for family carers (this is Essex based) but one service they offered was a befriending service where your Step mum could just talk to someone once a week. I know it’s not the same as getting out and about but it is a small step.
Stay strong Jules

Thank you Joy. I appreciate your support. I will try the helpline. What is the best day time to call? When it’s least busy? I think I tried last week and wasn’t able to get through.

Aww thank you Jules! That’s so kind and thanks both Joy and Jules for your warm welcome.

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You need to get in touch with Carers uk and ask for a carers assessment. They have a wealth of information and support services. Many of the branches have specific meetings for the carers of pwp.

Additionally if you look on the website for Parkinson’s uk you will find details of branch meetings and cafes which both can attend.

You can also ask for a visit from your local Parkinson’s advisor who will have a lot of information and guidance.

Additionally help the aged is a very good resource.

It is important for all carers to realise that by looking after themselves they are also looking after the person they care for. This sometimes takes a while to realise …

Good luck