Giving up work(24 Posts)
Hi long time lurker here. Have been following various threads on here regarding elderly parents and have seen how much knowledge and support is available so thought you may be able to give me some advice?
My DM is in the last stages of COPD, LTOT, nebs 4 times a day etc. She is adamant she wishes to stay at home and I completely support her in this decision. We have carers 3 times a day for wash, meals, personal care etc.
I work full time and also have a partner with temporary neuro disability so have a lot on!
Mum is now chair bound pretty much - can mobilise to commode by her chair and that's pretty much it.
She is completely with it mentally but can't cope with "official " type stuff like nurses, social worker assessments and so on which she wants me to be around for.
I'm not coping - when at work I'm just wanting to be with her meaning my concentration is awful and I don't feel I'm giving my best to the company.
My partner would be able to support financially to a certain extent but if I gave up my job would I be entitled to carers allowance?
Phew sorry such a long first post but really at the end of my tether here
Hello, you would get carers allowance if you do a t least 35 hours of care per week (not including travel to and from your mum's). She should also be getting attendance allowance. In fact she would need to be getting at least one of a range of benefits including attendance allowance for you to be able to claim carers allowance. All the info is on relevant government websites.
Thanks Bob I've had a chat with my boss this morning and I'm in the very fortunate position that the company are going to do all they can to support me - allowing me to disappear if needed etc.
May still end up giving notice but for now I feel a little better.
Reading the other threads on here I now realise how fortunate I am!
That's good, it's always positive to try and keep your own life and occupation going, providing of course it dones't all get too much. I had a supportive boss and employer too (the NHS), although at the end of the day I only get about 3 days' carer's leave per year, al the rest had to be annual/ unpaid leave.
You know that hadn't actually occurred to me about trying to keep my own life! Between mum and partner over the last two years it's all been about them..... Particularly Mum as COPD is such a roller coaster of a disease
Please do not lose sight of your own life!! It sounds like you have a huge amount on- do you have dc as well? To be any use to anyone you must look after your own needs. I try to facilitate and plan - but I try to get others to do things like cleaning/ gardening/ etc as I could get consumed.
Do you have POA? Could you have the mail redirected? Enlist age uk etc to help sort out benefits and look out for hospice at home care/ day care too.
Could you reduce you hours? Look after yourself.
DC both grown up - eldest has 2 amazing little ones but lives 3 hours away. Youngest lives very close and is a huge help but has her own life to lead and ironically I insist she does.
POA has been discussed but mum has full faculties (apart from being stressed by official forms) so I just carry out her decisions in her behalf mostly over telephone once she gives them permission to talk to me.
She is under the care of our local hospice but the times I've contacted them due to an exacerbation they have been less than helpful tbh - "we have a lot of cancer patients to deal with you know".
She is on full benefits that she is entitled to so that's not an issue.
I think the most difficult thing is not having s single point of contact for advice - need to contact social services for care plan, get passed between hospice nurse, COPD nurse, GP when need someone to check her over - they all seem to think it's someone else's job!
Sorry for epic posts just don't really have anywhere else to go
Sorry to hear that unmanned. Sounds like your DM is getting support but you are the lynchpin. I would reiterate how are you looking after yourself?
What advice would you give to a very dear friend in your situation?
Spa day? I'm really good at giving advice but rubbish at taking it! Have asked for a carers assessment so see how that goes.
Thank you for your support it means a lot to know someone is there
If a spa day would be your idea of bliss book it!!!! Or even a massage etc to get you into the habit of self care!!! It is an investment in essential maintenance!!!😄🌺🌺
I agree with Sandwich being responsible for an unwell elderly person is so demanding that you have to tend to your own needs to, if only just to be able to carry on.
I used to work in palliative care and what you say rings true. COPD can be a bit of an "orphan disease" it can be every bit as debilitating as cancer, but does not get the attention and funding cancer does. I think the statement " we have cancer patients to deal with" was unprofessional and also against what modern hospices are supposed to be promoting, which is quality of life and rehabilitation in those with life limiting diseases regardless of diagnosis.
Also, I don't want to tempt fate but as long as your mum has capacity and her affairs are fairly simple, it is possible to manage without POA, i know a few people who've managed everything by passing the phone over and getting them to say they allow their child to deal with the matter at hand.
Again thank you both for your replies- I'm booking a massage to get rid of the pains in my shoulders and neck from the tension 😊
And yes COPD although very common these days does have that "orphan " feeling
Booked for week tomorrow - Swedish/deep tissue massage - this is going to hurt isn't it
Oh my word!! Went for the massage - couldn't believe how bad my back was. Thought was just shoulders and neck but no - when she started the massage it was like trying to get iron to move
Did hurt but it was a nice hurt IYSWIM and oh my days felt bruised next day but moving SO much easier - really can't believe the difference it's made. Booked next session and this is the first step in looking out for me!
Hi there Unmanned
DM also has COPD and is on LTOT and also has heart failure, so I just wanted to say I know how you feel about not having a lot of support. We have Respiratory nurses every few months, the community physio comes to her sporadically. The most regular contact she has is the District Nurse who has to check her bloods for her warfarin every few weeks! The Respiratory Consultant has signed her off! The Cardio consultant only wants to know about bits that are unrelated to COPD, and says there is nothing further he can do. The GP isn't very proactive either. Every exacerbation knocks her down further. So yes, everyone kind of does their bit, but noone really feels like they are in charge!
I am working part time now, around 20 hours a week, which gives me time to get to her a few mornings a week and most evenings. Work have been really good, and when I have needed to take time off, I can make it up at other times. It's not easy, but I am lucky that she lives a 5 minute drive away.
There's a friendly forum via the British Lung Foundation healthunlocked.com/blf. They also have a helpline which is good as well.
Well done you for getting the massage, I am booking in for reflexology this week. You have to look after yourself!
It's such a minefield COPD isn't it? Know what you mean about exacerbations knocking them down further.
We've just got Mum over her 4th in the last couple of months however I'm now tapering off her steroids (as per prescription) and just waiting for her to go down again. She does so well on them!
Enjoy the reflexology - I'm off for another massage on Thursday
Does she have a steroid inhaler Unmanned? DM improved a lot once they put her on Symbicort.
Hope the massage is good, I left it too late to book and have to wait a whole week before my reflexology. Grr.
She has symbicort, ventolin and spiriva respimat inhalers, now also on nebs 3 times a day as well as thyroxine, lamotrigine for her epilepsy- I could be a pharmacist I joke that I'm her drug dealer when I put her meds up weekly!!
Sorry to hear about delay for reflexology deffo grrrrrr
Well good news from the doc - they've said mum can stay on low dose of steroids permantley now - only taken discussions with 3 doctors and 4 nurses to get it though
Good news unmanned- and I mean the massage!!
Hi thesandwich yep have decided it's absolutely essential maintenance and at £15 it's going to be a fortnightly booking!
Tarrarra did you book your reflexology yet?
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