I'm new to the forum this week, and I've been meaning to introduce myself, but life's complex, mum needs so much looking after, that I've decided to share a little poem I wrote this afternoon when I felt tearful and frustrated ... so here it is, with apologies for some pretty dreadful rhyming and scanning ...!
It feels like hundreds of hours I’ve spent
Looking at your peaceful sleeping face
Trying hard not to give vent
To any ‘anger’ at my being in this place
‘Mum?’, I say, ‘Ready to wake up sweetheart?’
Often you’ll nod your head in your sleep
But eyes stay firmly shut, with lips apart
The ‘Parkinsons sleep’ is so so deep
Another time, eyes will open wide with love
‘Hello lovely lady’, with happiness, you’ll say
And then I’ll hug you from above
And I know that we can start your day
It’s so hard to stay patient and loving
Through all the ‘challenges’ and strife
I truly didn’t realise how ‘caring’
Would overwhelm and take over my life
It’s 1pm, you’re still asleep, I feel I’ve failed
You’ve had a quarter sandwich, and 2 doses of pill
Plus half a glass of milk
But it’s really not enough - you need a good meal!
Let’s hope tomorrow you’ll easily wake
Find some energy to use to sing, and have fun
We can watch ‘Judge Judy’ and eat some cake
And I can pretend it’s you who’s still ‘the Mum’!
Thanks for sharing your poem. You seem to have a really good relationship with your mum.
May I ask if you are receiving what practical and emotional help you should be. I know there's not a whole lot out there but it might be worth checking with yhe help and support line top left of this page as they can give a lot of practical support. There is a legal entitlement to a Carers Assessment irrespective of what services the cared for person may or may not be receiving. Where I live the carer is seen by a Carers Assessment Support Worker who can signpost carers to various services to make life a bit easier for the carer such as, for example, emergency care in the home to enable carers to attend their own medical appointments.
There are quite a few carers who post on this forum. No doubt they will be responding to your post.
I'm a carer for my Dad and at the moment things are not so bad he is fairly early into pd and dealing with it fairly well all be it with experimenting with doses of drugs etc, times can be frustrating and this is a good place to vent if you need to, don't forget that you have your own life too and there will be support and help for you and your Mum to get through together, hopefully your Mum will get the right combination of pd meds to make things a bit easier, hang in there and escape with your poetry when you need to take care.
Thank you both for your kind words.
I do have some support from carers at certain times of the week, and also my brother (not to mention my partner who is a saint), but I just feel so much responsibility for mum at the moment and end up spending around 50-55 hours per week at her house (fortunately for me, she goes to bed at 7.30pm!). She will probably move to a care home in the next couple of months as she realises herself that she cannot manage to live alone now, but all her independence has disappeared literally in the last 18 months. I gave up work 12 months ago as I could 'see the writing on the wall' - she has macular degeneration as well as PD, and is currently going through treatment for one of her eyes involving 3 x monthly injections... last one next week.
Her meds are pretty well set now, having been through 12 months in which (in the following order from April 2013 to April 2013) she: reduced and stopped taking pramipexole, stopped half-sinemet at night, had omeprazole introduced for acid reflux, had long-standing stalevo dose increased, had rasagiline introduced, had aricept introduced and then taken away as it made her sleep even more, and eat even less, so had quetiapine introduced instead, and then fludrocortisone as all the others lowered her blood pressure, finally we "half-lowered" the stalevo dose back again. Last week the fludrocortisone was raised as she is now fainting every day, presumably with the hot weather, but that's my next conversation to have with GP! With each reduction/increase, I have observed/monitored the "results" to feed back to the Parkinsons Nurse/Neuro and GP, and I don't think we'd want to muck about with them again in the foreseeable!! During April-Dec 2012 she lost 2.5 stone in weight; since then she has managed to put a stone on, and then take half a stone off again (so 'medications' for nutrition and constipation have also featured)! Hey ho!!
Meds are all a bit of a lottery really as so much probably depends on which drug you start off with - if she'd started 8 years ago on something else other than stalevo and pramipexole together, it may have resulted in a completely different 'journey' meds-wise.
Dealing with all the professionals involved / care agency and Council, and other official bodies is just soooo labour intensive that I do get a bit frustrated and tired of it all, so it's going to be great to have this forum to 'offload' a bit.
Anyway, again, thanks for your support, and I'm sure we'll 'meet again' on another part of the forum, as I've probably gone a bit 'off topic' by writing so much above!
Hi Tessa and welcome, I too am a full time carer for my young adult daughter who has a learning disability (Downs) and mobility issues. I was recently diagnosed in the early stages of Parkinson's.
Have you had contact with the local Parkinson support worker yet? I found mine a great wealth of information, also the Parkinson nurses are excellent too.
I can fully empathise with the caring side, its a 24/7 job in itself and now we have this illness to cope with on top.
Do keep posting and in touch.
Tony in Cornwallhttp://tjkernow.blogspot.co.uk