05 How many options does a stroke survivor have?
By this I mean ‘how many options are there to live one’s life following a stroke?’
Just two! Following a bad stroke it is usual for the patient/victim to spend several weeks in hospital to stabilise their condition, then be discharged to their home environment. The first action then is to organise the care needed to ensure all is safe and comfortable, everything else has to wait until a care routine is at least reasonably well established.
What follows? There is a big decision to be made that should include all the family who might be involved. Which of the two options is to be followed? One option is passive, the second is active. One may appear to be relatively easy to follow (some may disagree strongly with me on that claim!) the second is definitely hard work and could last a long time. Is everyone involved agreed on the long-term aims for the survivor who is involved? Is this survivor sufficiently alert cognitively to contribute her desires to the discussion (at that time Rita was not).
The passive option is to continue to concentrate on care. To set up a good care routine to meet the needs of both survivor and carer, as far as possible. To ensure the survivor can live as pleasant a life as she can within the limits of the disabilities she has. But who is to be the main carer? This may be a commitment lasting years. Is the carer prepared for this? It is easy, at the time of the stroke, to concentrate on the needs of the survivor and disregard the future needs of the carer, who may have agreed to take the job on through a sense of duty, not understanding the size of the commitment. I have met many overworked and stressed carers, and been one myself! Does everyone understand that the survivor is unlikely to recover under this regime? This is a major decision to take.
The active option is to set up a rehabilitation programme. The aim of this is to work on overcoming the survivor’s disabilities, whatever they may be, and recover her former lifestyle as far as possible (by pushing back the boundaries). Full success in this, for someone with multiple disabilities following a major stroke, may not be possible, though it is reasonable to expect significant improvement could be made. This sounds an attractive option, but needs the full commitment of both the survivor and main carer. It means hard work, preferably every day, and is likely to take a long time. It also needs professional help from trained therapists to provide guidance; will this support be available from the health authorities in the region where you live? If it is not, can you afford to pay for therapists privately, or use one of the private organisations offering therapy programmes? Despite a great deal of effort and sweat and tears, my attempts to set up a successful rehabilitation programme for my wife in the UK failed utterly, but the one designed for her in South Africa was highly successful, as described in detail in Pushing the Boundaries.