PSP Association
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How to get a break for mum?

Mum is currently really struggling caring for my stepfather with PSP... he used to go to day care one day a week which made a huge difference but after having a nasty fall there he's lost his confidence and won't go back. She would be able to have someone come in but he isn't keen on being around anyone else apart from mum and is really as clingy as you can imagine. I realise why he's like it but I'm really concerned about mum's wellbeing but the problem is she doesn't want to force anything on him that he doesn't want.

Has anyone else been in a similar position? Have you any tips on how best to suggest something which might be a compromise? She can barely leave the room at the moment without him asking where she's going or checking that she will come back.

7 Replies

Your Mum needs respite care or she will become very ill herself.If your dad does not like going out anywhere(my husband does not) then get care in to sit with him a couple of hours.We have just started to do that as I am it,24/7as well.I have a few hours to be able to do what I need ,he is safe.We have Crossroads and they are lovely people.I has taken a long long time to get them,but you can pay for them yourself,while you are being assessed etc,which also takes a long time.Had we known,I would have started the ball rolling much earlier..neither your Mum or Dad will like this,but she has to ,if she is to remain mentally and physically well and she needs to be for him.


That is exactly how I've put it across to her. I've said that I know it's hard for him to understand but if she doesn't have break (no matter how short) she will become mentally and/or physically too unwell to caring on looking after him. But she's so stubborn about it and gets wound up if I push it. I'm finding it really difficult to convince her it's necessary.

Thank you for your answer anyway.


Hi...I don't know whereabouts you are so don't know whether this will apply to you. I'm in Tameside Greater Manchester & we had brilliant support. Firstly the SPRINT team which consisted of Physios, SALTs, OTs etc. Then the District nurses referred us to the Palliative Care team & the Marie Curie team. The Palliative team came to sit with Frank one afternoon a week for 3hrs so I could do my own thing & the Marie Curie Night service came twice a week from 10pm - 7am so I could get some sleep. Without this help I would have been on my knees. It was all NHS so cost us nothing. Perhaps your Mum should have a word with the GP. Hope this helps. I know how your Mum is feeling as Frank got quite clingy & always needed to know where I was & what I was doing. Take care Love Hazel B xx


Thanks Hazel. Mum has had frequent contact with their GP who is fully aware of everything which is good. She also gets emotional support etc. from her local Carers Support charity (that I ironically work for, though not as a support worker). All of whom have suggested respite services and even had some ready to put in place but she's refused it all. I have had another word with her this morning and she's promised me she'll seriously think about it but I think I'm going to have to keep pressing the issue. She says she feels it's her 'wifely duty but doesn't want to be a matyr'. I think she needs gentle reminders that he will get worse and then it will be a necessity rather than a choice.

It's helpful to know others have experienced the same. Thank you x


Hi there

It is really lovely that you are looking after your mum's needs as a carer, as carer's often overlook their own health and need someone to make sure they are coping and getting enough rest. Perhaps a compromise might be to introduce an additional carer very gradually so you dad has chance to build up a relationship with them and learn to trust them and get used to someone different helping him. Accepting help, especially personal care from a stranger, is a very difficult thing to do for someone who has been very independant in the past and these things should be handled as sensitively as possible.

Perhaps start off by getting the new carer to come round a few times for a cup of tea/coffee with your dad and have a chat to him when your mum is also there. Then if the weather is ok get them to accompany your mum in taking your dad out for some fresh air for a couple of hours. Introduce the occasions more and more frequently and then when your dad is ready, get them to help with his personal care. Eventually the new carer will become familiar with your dad's likes and dislikes and preferences and your dad will get used to them and your mum may feel more relaxed about leaving them alone for a couple of hours whilst she has a break. If this is successful the time your mum spends having a break can be gradually extended until she can get a full day away. If longer periods of time are needed it might be that respite at a local hospice could be arranged to give your mum a weekends respite away whilst your dad is looked after in a caring environment. If other members of the family or close friends can also offer some help such as visiting frequently both when your dad is at home or when in respite care this will spread the load a little bit more for your mum.


Hi Kat,

Thank you for your reply - that was some really good guidance in terms of making the transition a little easier for him (and for mum). I will definitely talk to her about considering that as a softer way for him to get used to another person helping. The ironic thing is that some days he doesn't remember mum's name or asks for other people who don't exist (Barbara is a favourite at the moment) so it's almost strange that he would insist on having her as a 24/7 constant. I realise that's all part and parcel of it though.

I do visit as often as I can, every couple of weeks at the least, but it's quite tricky having a full time job and not living very nearby. I think it certainly makes a different when I do - just me being there makes mum happier and 'lightens the load', if only to have some company there who she can talk to. I really wish I could be there more often but it's just not feasible.

Thanks again.


Hi, I hope you've got this one sorted now, but just in case you haven't then, yes, I know exactly where you're coming from.

My parents were exactly the same. They stuck together like glue and when the day centre stopped my dad going due to falls, my mum had no break at all. For them, they lived in Cornwall with very limited amenities/facilities and hardly any support. It ended up in them both moving to a flat where care was on site, but they still had their own space. My mum still did pretty much everything but she had the help there when she needed it. They'd come and help put him in a wheel chair and she'd take him out with her! So, no, she didn't get a break initially, but eventually it was my dad who realised she needed a break.

I guess what I'm trying to say is, sometimes solutions come in lots of different ways and if you've got a brick wall, you may have to find a way to get round it rather than over it or through it,

sarah x


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