New to this

Hi everyone. My first post, and my head is a shed. My stepdad has prostate cancer and is having Hospice at home (confined to electric bed, carers four times a day, district nurse, oxygen etc etc). My mum, 82, cares for him 24/7. Long story short, Mum was rushed to A&E with a nosebleed 3 weeks ago, thankfully sorted out with cauterisation. Since then I have dropped everything (part time job, volunteering) to help in any way, sleeping downstairs with Barry so Mum can go to bed, completing DLA forms, shopping etc. You know the stuff. Our world has shrunk to a bubble filled with lots of lovely caring folk who form a constant stream of visitors to the house, and the main thing is that Barry is comfy, pain free and Mum has time and more energy to sit with him.

Living day to day is the name of the game, however here is what is worrying me right now, and any comments would be most welcome. Hubby and I are going on holiday in four weeks' time, for two weeks. As I type this it is my intention to go, ( as others from hubby's family are also going), although things could change. How can I get extra help for Mum while I am away, especially overnight sleep cover? I have raised the issue with some of the people who attend Barry, but no one seems to want to either plan ahead with me, or have an honest discussion about where we might be by then. 

Reading this back I hope I don't sound as if the holiday is the priority; it's not. I think it's important to Mum that we don't cancel unless no other choice if that makes sense. my way of dealing with stressful stuff is to plan and manage the heck out of it then go with the flow for the uncontrollable bits. I am well out of my comfort zone with this one as you can imagine. Thanks for reading. Any comments, advice or a hug gratefully received.

Carole.

  • Hi Carole,

    Welcome to the Online Community, a place nobody expects to be. I'm so sorry to hear about your step-dad but it sounds as if he's got a great support system around him.

    I don't think anyone would accuse you of putting the holiday first. It's quite clear that you're concerned about Barry and your mum, and you just want to do what's best for them. 

    You might want to take a look at this Macmillan page about organisation. There may be some information on there about how to draft in overnight cover and other sources of help.

    I'm sure other members will be along soon with their own advice, but in the meantime I would recommend you give the Macmillan support line a call. As it's run by nurses and advisers they'll be able to point you in the right direction of those who can help, or give you ideas of alternative solutions. The phoneline is free and is available on 0808 808 0000, Monday to Friday, 9am-8pm. Give them a call and see what they say.

    I hope this helps. It sounds as if you're doing a great job.

    Take care,

    Jazmine

    Online Community Officer
    Macmillan Community team

  • Hi Jazmine and thank you for your kind response. I will read the info you have suggested and make that phone call. Am just setting off to Mum's as a couple of Barry's old friends are coming to see him. I fear they will be dismayed and upset to see him this way, so want to be on hand even just to make tea and hand out sarnies! Tomorrow, all being well, Mum is having three hours respite from a Hospice nurse, so I am taking her to a garden centre for shopping and afternoon tea. With Prosecco. It's a dirty job but somebody's got to do it! :0)

    Thanks again

    Carole.

    Carole

  • Hi Carole,

    It's great to hear that your mum is getting some respite as it sounds as if she really deserves it. Afternoon tea (and Prosecco) sounds like a great plan.

    I'd really encourage you to keep posting on the Community as the Carers only forum group are a lovely lot.

    Best wishes,

    Jazmine

    Online Community Officer
    Macmillan Community team

  • hi carole I used marie curie night sitter for my sister when she was very very poorly they gave us 2 nights a week an we were refered by district nurses. also what about hospice can they help with a week or 2 respite for your mum. worth looking into as he is so very poorly.we also had 24 hour carers when my sister was discharged from hospice under continuing care package arranged by hospice. there is help out there you just have to shout very loudly sometimes to get it. when I cared for my mum I did almost everything myself because I didn't ask an thought I should be doing it. don't let your mum do everything shes to old an stand back as far as possible so your mum gets some much needed help. good luck juniepoonie ps don't have to say anything about you going away just that your mum cant manage anymore. xxxxx

  • Hi juniepoonie and thank you for your ideas. I will ask the District Nurse about night sitters. You make a good point about asking for this anyway rather than tying it to the holiday. Any amount of respite, no matter how short, is invaluable as long as it is regular so we can rely on it and make sure Mum gets the most out of it.

    I am just back from there; Barry's friends were lovely and took the situation in their stride. Mum fussed over everyone with food and drink and was clearly enjoying being able to host a little get together. Barry was sleepy but lucid and had little chats with his visitors. A good day x

    Carole

  • A quick update if I may. The lovely District Nurse(s) have taken note of my holiday dates and feel sure that Marie Curie will offer two nights' cover while I am away, which is brilliant. CHC being chased up, as is review of Barry's DLA, so fingers crossed a bit more financial help will be forthcoming.

    Barry continues to have up and down days, with many and varied issues from constipation to nausea, confusion and agitation. The list of medication grows ever longer, but brings a sense of routine in unpredictable days.

    Today is respite day hooray! Never underestimate the value of just three hours a week - today we are going for lunch and to a shopping come garden centre with lots of different outlets. It's surprising how much you can fit into three hours when you plan it like a military manoeuvre!

    Afternoon tea with Prosecco last week was fab, and my brother in Chicago loved the happy photo of Mum enjoying it as I know he worries being so far away.

    Thanks again for kind suggestions and comments, and I hope today is a good one for you all

    Xx

    Carole

  • A final update if I may. My stepdad passed away last Wednesday 29th June. He was still with us when I got home from holiday, and he knew I was there. Mum had wonderful support from Marie Curie who sent night sitters every other night while I was away. 

    Now we are arranging his funeral. Thank you to everyone who responded on here and my new lovely friend Julia with whom I have been messaging. Your support has been so helpful during this awful time, and I wish you all peace and love with your own circumstances.

    Thanks again xx

    Carole

  • Hi ,

    I'm so sorry to hear about your step-dad, but I'm glad you were able to see him after your holiday. I'm also pleased to hear that your mum got the support she needed.

    When/if you're ready please do join our Bereaved family and friends forum group (if you feel you want to). I'm sure you'll be of great support to many members.

    Take care,

    Jazmine

    Online Community Officer
    Macmillan Community team

  • Awww shucks 

    xxxx