My parents have been a lifeline since I became disabled. But now they are pulling away

I used to see them twice a week, but it is creeping towards once a fortnight and I don’t seem able to tie down arrangements with them. What should I do?

Ten years ago, my parents, now in their mid-70s, moved to live closer to me and my family. Now I sense they are slowly pulling away and I don’t know how to tackle it diplomatically. We used to see them twice a week but it’s creeping towards once a fortnight.

It has become increasingly difficult to make any arrangements in advance. This seems to be just with us; with anyone else, my parents are very keen on planning. They have a full year of groups, holidays and meet-ups with friends all arranged. Before they moved, my parents talked about babysitting, but after a few times we didn’t seem to be able to tie down arrangements again.

Four years ago, I became disabled. My parents have been emotionally supportive but, on a practical level, there seems to be a limit. My disability means I cannot drive or go out alone. I have daily carers and my husband for support, but friends have dwindled over time. Seeing my parents has become a real lifeline for me, for social interaction and an opportunity to access the community. I’d be grateful for some fresh ideas as to how to try to deal with this.

Reading your letter, it is difficult not to feel cross with your parents. What are they thinking? Gadding about, being social butterflies, going on holidays when you are coping with bringing up children and unable to leave the house unaided. Don’t they know how much support you need while dealing with such a massive physical and emotional challenge?

Actually, that could be the root of the problem; they don’t know, because maybe you haven’t fully explained how things are for you now. This isn’t a failing on your part – you are likely still adjusting to your new reality. Nicholas Rose, a UKCP-registered therapist, believes that when a seismic change happens in someone’s life, the way they think alters significantly. “The things we used to want in life will change and we often have to catch up with what that means to us – no wonder it’s difficult to explain to others what we would like because we are still figuring it out ourselves. Try presenting your parents with a fact – ‘I need a babysitter next Tuesday’ – rather than an emotion or accusation, and see how they respond.”

I also wonder how you made arrangements to see your parents previously, and if perhaps their spontaneity was something you once valued? “In families, love tends to be shown in specific ways, be that through food, or playing games or surprise visits,” says Rose. “The same goes for how help is offered and received. But when circumstances change, what used to be helpful isn’t any more. That can be really awkward to explain because we worry about hurting people’s feelings.”

Sheri Jacobson, founder of Harley Therapy, has worked with many disabled clients. “Explicitly stating what we want when we are feeling unwell and uncared for is not easy,” she says. “But it’s really important to have open communication, in a very gentle way. It will involve some vulnerability. Other people often make false assumptions about what it is we might need.” She suggests starting the conversation by asking how your parents are feeling about your loss of independence. “It will have affected them, too.”

She also thought it could be useful to write a script beforehand. “Try something like: ‘These are the changes I’ve undergone, this is how I feel and this is what I think would help me. Are you able to put a date in the diary and plan ahead because I would like to have something to look forward to?’” Tread lightly because the topic could provoke distressing emotions around their capacity to help and also their desire to carry on enjoying their own lives.

Last of all, if your parents can’t visit regularly, could they commit to a weekly Zoom? You could also join a support group for people suffering from a similar condition – Facebook and the Scope forum are good places to start – and look for online classes devoted to a pursuit you enjoy. Your disability has forced you to live life differently but that doesn’t mean you don’t still have a right to experience joy and connection.

• If you would like advice from Anita on how to navigate thorny issues between you and a friend, partner, or family member, submit a brief description of your concerns here. Submissions are subject to our terms and conditions.


Anita Chaudhuri

The GuardianTramp

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