Help or Controlling?

How does one cope with a very ‘helpful’ family member who I am finding suffocating. I feel mean complaining but it seems as if my independence is slowly being chipped away as they are there at every turn I make. Every time I go to do something they jump in and take over.

Any suggestions how to deal with this will be very gratefully received.

Hello Normington
I think your problem is very common and difficult to manage because it is usually well intentioned and it is of course lovely people care enough to be concerned and ‘help’ but at the same time it can be extremely frustrating, even annoying. It also uses a lot of energy - you may not think of it in those terms but it does - which you can put to far better use.
As is often the case when living with any form of chronic condition, the person who has it not only has to take on board all that means mentally, physically and emotionally but also has to be ‘director of operations’ and let people know how you want to ‘play’ it. This can be another energy stealer because diplomacy and consistency is the name of the game. So what to about it? Well this is general because you don’t give any detail but I hope something in what I write will help. If you don’t feel able to broach the matter directly, how about a letter? Totally off the top of my head so have no doubt you can do better but maybe something like this?

This is a hard letter for me to write because the last thing I want to do is hurt you. I understand you worry about me and want to help only because you care but I have to ask you to please try and understand that I need to be able to do what I can from myself. I may look awkward or be slow but that doesn’t mean I can’t manage. I am writing because I don’t know how to tell you without feeling mean and ungrateful because I know I’m lucky to have you on my side.
I promise if I need help I will ask you and be grateful for it but otherwise you must let me get on with it, or at least ask if I need help before stepping in so that I have a choice - now that would be the best way you can help me.
I’m sorry if this letter upsets you but my hope now you know is we can talk about this.

However you do it I think you need to be clear in your own head about how you want to manage your Parkinson’s and I think I would try to avoid being accusatory eg ‘you’re always taking over……’ etc and maybe there are a couple of things you don’t mind them doing for you so they can still help but on your terms. I also think you may need patience - old habits die hard.

I don’t know how much this may help but it may spark ideas that will suit you.
Good luck!!

Hi Tot,

Thank you, you have given me something to think about and I may well put my thoughts / feelings down on paper.

Best wishes,

For what it’s worth I would probably do that only because you can take a bit of time to get it right, say what you really want to say without having to field verbal reaction that could end up going any which way. I would see it as a safer way to get the discussion on the table. However I would say that I think you may need to be prepared to hold your ground. I opted to do this from the start but it took a while to get everyone to sit on their hands and trust me to ask if help were needed. Do let us know how you get on.

I came across your post this morning, I too have the problem (if it can be called that) that you have described, it has caused a lot of issues between me and my OH, as I know I need to do things for myself, whilst I still can! I don’t have any magic answers, but a letter does sound a good way of getting your point across, in a controlled way and appreciated for their care towards person with PD, I firmly believe that other people should or need to take the lead from the person with PD, it’s awful enough that the disease is in control of our bodies and minds, without an uphill struggle with well meaning people, de-skilling us, sorry if that sounds harsh! :face_holding_back_tears: I am just trying to keep my independence and in the long run prevent carers strain or burn out. I have used the word ‘carer’ although I hate it I prefer helper, PA Parkinson’s Assistant! I feel that word doesn’t help to foster a more equal relationship, thus causing this issue of over caring, in the first place.
I am so grateful that I have this forum to share my woes with and possibly help others along the way. Xx

1 Like

Hello Littlenanny
Just for the record I too, don’t like the word ‘carer’ either. To me it suggests a dependency - that I am looked after - in a way that is simply not the case. Unfortunately it is the word that all statutory services and just about anyone and everyone uses as it has become commonly used. I and others have written about this elsewhere on the forum as it is an issue that crops up from time to time - along with the assumption I must have a carer after all I have Parkinson’s and the shock and even disbelief when I tell them I don’t. By the way I don’t consider what you wrote as harsh, it is simply honest - the reality of living with a chronic condition like ours.

1 Like

I’m the wife of a Parkinsons victim with Dementia, Dementia Aggression, Diabetes Type 1 and Cataracts and very poor balance and excess salivation. Cannot read or write independently or distinguish certain colours or pictures / objects. Husband has deteriorated massively in 6 months. Demands and needs help with all his meds and meals and and trips outside the house, alternating with claiming he’s fine, normal and making out in public that he is happy and relatively independent. At home he: a) threatens me aggressively with shouting, swearing, bared teeth, staring eyes and hands out to throttle me if he needs help with anything. (Particularly as he never remembers where he’s put anything and won’t keep items in his man bag between trips out. And help has to be immediate. He’ll do this in public too if nobody’s looking. b) No pleases and thank yous, no affection, never makes me a coffee when he’s having one, just demands instant compliance or he has a meltdown. Has all his weekly meds laid out colour coded in pots on separate daily sheets, in kitchen, with reminder alarms on his phone, diabetes kit ditto in the bedroom. He cannot remember what to do or take or when, even so. He’s very slow and needs everything repeated several times in the process. A Parkinsons victim is not always aware how much help they get or need. Just say thank you, I’d like to do this for myself for the time being…It may actually be too difficult without discreet repeated intervention

Hi Alison’s after reading your post my heart goes out to you it’s a very difficult situation & not one of your doing. I’m in the same situation as you my husband has been pd diagnosed for 5yrs but deteriorated this last year. He’s a very king gentle man but he’s lost & confused now I’m full time carer. I’m finding it so hard trying to assist but not take over but it doesn’t work. He gets frustrated & needs help. I’m doing personal care, toilet help everything. This is not what we thought we’d be doing & on top of that you get aggression & anger. Feeling rubbish & wondering how long we can do this. Friends & family are great, talking & sharing thoughts. This helps, iv reached out this week & spoke to pd nurse. She’s put a referral for Adult care & appointment with pd consultant. Maybe this could work for you. Good luck

Husband now in hospital assessed as requiring nursing home as he is unable to understand how to calculate life saving insulin jabs and has done them indiscriminately. He’s supposed to self manage and I have had to refuse to deal with any medication in future. Medical lack of capacity is a safeguarding issue and social services not next of kin are responsible