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Tuesday, 22 October 2013

Out of my Depth

I don't think I have ever felt so under-qualified and ill-equipped in my life as I do right now. Suzie's health and well-being are my responsibility and yet I often feel like I just don't have a clue what I'm doing. There are so many aspects of our day to day life that have become increasingly difficult in recent weeks, and yet I feel no more qualified to deal with them now than I ever did.
Even the seemingly simple task of transferring Suzie from her wheelchair to her armchair, or her bed, or 'whatever'....that has to be done many times every day, is becoming more difficult, and I'm painfully aware that I'm not carrying out these manoeuvres as efficiently as I could be. I'm constantly afraid that I may be putting Suzie's safety at risk, not to mention my own, but I just don't know what to do to make the process any easier or safer. A physiotherapist might be able to advise, but we've only seen one once in the last six months. Suzie's Neurologist said weeks ago that we ought to be seen by a specialist Neuro-Physio but there is no sign of that happening any time soon. I'm trying to be patient and 'wait our turn' but it's very hard to do that when Suzie's condition is changing so quickly and I have so little confidence in my ability to adapt appropriately, knowing that she will suffer if I do the wrong thing. At the same time I'm afraid to ask to see someone else in the meantime for fear of being thought a nuisance or of coming across as unreasonably demanding. There are so many times when I really just don't know what to do for the best.
One such issue is the difficulty Suzie has keeping herself upright whilst she is sitting in her chair or in bed etc. but the last advice we were given (some weeks ago) was that we should avoid giving her any kind of postural support outside of her wheelchair because it would cause her muscles to weaken even more. We try to follow that advice but she is now unable to maintain a comfortable position for long and her efforts to stay upright cause significant pain. Ultimately it doesn't work because she slumps to one side, so she frequently needs me to lift her back up and help her to straighten up again. This is not conducive to a relaxed evening for either of us! We've had to resort to a make-shift arrangement with pillows at the side of her chair, just to ease her discomfort, but is that causing more harm in the long run? Is the previous advice still valid in view of her deterioration? 
On the 'medical' side, we start another round of tests and hospital appointments this week. The following week we have an appointment with the Oncologist who will assess the progression of the cancer and its on-going effects and symptoms. She will then decide whether any further medical intervention should be instigated yet.
Suzie then has to have an overnight Oximetry test to monitor her pulse rate and oxygen levels while she sleeps. MSA causes the malfunction of many autonomic bodily functions such as breathing, heart rate, blood pressure, body temperature, swallowing etc. Most of us don't even think about these things because they are controlled automatically but, in MSA patients, they aren't, so they need to be monitored, and corrective intervention applied where necessary.
This week we've had an added medical problem.... nothing to do with the MSA or the cancer, but, yet again, something I'm trying to deal with without the benefit of any kind of medical knowledge or training. The 'Out of hours Doctor' on Saturday provided us with some dressings, but I then had to change these dressings periodically over the weekend, trying desperately hard not to pass out at the sight of all the blood and gory stuff. Those of you who know me will know that I'm hopeless with things that involve blood and open wounds, and I faint at the sight of such things. I had to keep alternating between trying to replace the dressing and lying down on the floor until my head stopped spinning!!
Tomorrow, however, we have a visit from our lovely Hospice Social Care worker. The timing couldn't be better as I'm sure she will help us to feel strengthened and more mentally equipped to cope with the weeks ahead. Her visits are always a blessing to us and we thank God for the emotional support she gives us. Please keep Suzie in your prayers during the coming weeks. Thank you.