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Friday, 3 January 2014

New Year, New Phase, New Support for Carers

I think Suzie hit the nail on the head the other day when she said she felt like she had moved into a new phase of her illness. We are now a few days into the new year, but already it feels like we're a million miles away from where we were only a few weeks ago. Suzie's ability to move has decreased significantly and she is needing more and more help with every aspect of day to day life eg. washing, eating, moving, blowing her nose, communicating etc. etc. In recent days we have also seen a surge in her anxiety levels which has led to a number of very fretful days, interspersed with days where sheer exhaustion causes her to sleep for hours on end, barely able to open her eyes long enough for me to give her a few mouthfuls of food at lunch time.
Unfortunately, these periods of prolonged sleepiness don't extend into the night, and we have seen an increase in our night time disturbances. If you imagine for a moment the implications of being totally unable to move, turn over, or even just change position slightly in bed, it's no wonder my poor Suzie is getting so much pain and discomfort all through the night. Add to that the muscle spasms in her feet caused by the MSA, which are excruciatingly painful and relieved only by massage and passive stretching exercises, as well as the pressure on her coccyx from lying on her back all night.... it's really no wonder we're not getting more than an hour's sleep at a time. When Suzie does manage to fall asleep she's often disturbed by distressing dreams and night terrors, and needs a lot of comforting and reassuring. These disrupted nights often end prematurely either when Sue can stand it no longer and asks me to get her up, or when I give up hope of getting any sleep and get up and make some coffee (at which point Sue usually dozes off again!) It breaks my heart more than words can say because she really doesn't deserve any of this.
A telephone call this afternoon from our Rowcroft Hospice Palliative Care Nurse instigated a consultation with our GP, the result being that Suzie has now been prescribed some medication to help with the anxiety, and her sleeping tablets have been increased.
Rowcroft continue to be our lifeline when times get tough, and in return we continue to try to raise awareness of their services, as well as funds for their on-going work. If you haven't yet looked at our page, please do so by clicking on this link:
Suzie's 'Help our Hospice' Page. All donations are very gratefully received. 
As Suzie's sole carer I feel the responsibility and isolation acutely, and I gain an immense sense of support and encouragement from my contact with other carers, mostly via the internet. With this in mind I have set up the 'Caring Companions Uk' Facebook group as a way of extending this support to other carers of people with all illnesses. I welcome any new members who need, or can offer, online friendship, encouragement and support. If you are interested please click on this link and click 'Join Group'. 'Caring Companions Uk'.
With a very uncertain year ahead we rely ever more fully on the unfailing love of God to guide us and support us through whatever this year may bring. We've survived the last year and we've lived to tell of the blessings we've received. We have every faith that this coming year will bring nothing that we can't handle with the grace of God upholding us. Please continue to walk alongside us as we face whatever 2014 may hold.
May we also offer our best wishes for a happy new year to each and every person who is reading this now.  May your year be filled with God's richest blessings and may your dreams come true.