Outside support

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Hi,

I am looking after my partner who has glioblastoma. It is about 15 months since his diagnosis and we have done ok so far... I did quit my job as the stress at home and work was too much for me, but we are managing financially with his PIP payments, and insurances etc. I have been getting out cycling or to the gym or with friends several times a week and this has been keeping me sane! He is increasingly reluctant to do very much and after talking on the MacMillan carers' site here many times I have stopped trying to coax him to do things which he does not want to do, and which became exhausting for me.

However I am increasingly aware that he is becoming more confused, forgetful and withdrawn, and I am wondering what will happen when he cannot be left anymore? If I am unable to get fresh air and exercise I will not be able to cope. I wondered about centres where he could go locally...? or where to look for other sorts of support.

Any suggestions gratefully received.

We are near Rugby/Coventry

David H - Macmillan over 1 year ago

Hello @Lady in a van

Thank you for getting in touch with us about this. I can see that you are concerned about your partner’s needs at home and need some support for yourself to give you a break. It is understandable you want to seek out this type of support as your wellbeing is just as important as his.

The best way of accessing this support would be through his healthcare professional carrying out a needs assessment for you both. They would then look to put in place support to help with his care. You can find out more about that process here.

You could also look to get a carer’s assessment by looking at the information here.

In terms of other support, it might be useful to have a look at our In Your Area search. From there you might be able to find other support locally including Macmillan Information and Support Centres, and any local support groups which might be helpful for you.

Other organisations such as The Royal Voluntary Service and Age UK might have services that can provide a volunteer to keep him company for an hour or so to give you some time for yourself. It may be worth asking them about that too.

We are always here to talk things through and provide guidance for you. In addition to the Online Community and Ask An Expert services we also have a freephone support line 0808 808 00 00 and an online webchat service. Both are open 8am – 8pm seven days a week.

Please do stay in touch with us.

David, Information and Support Adviser

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.

Lady in a van over 1 year ago in reply to David H - Macmillan

Thank you for your reply David.

I have been in touch with the District Nurses who came out yesterday and spoke to us both, although my partner does not really talk much anymore. He has gone downhill quite rapidly over the weekend and so already I cannot leave him for even 10 minutes because it is as though he has full dementia and I don't know what he will do next. The oncologist has increased his steroid dose considerably and they are trying to arrange for his next scan to be brought forward.

I am going to the local hospice today with him because they have a support hub there, and hopefully can give us some help.

Thank you to you and all at MacMillan for everything you do xxx

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