My partner had a serious stoke almost four years ago. They don’t appear to remember very much about the early weeks following the stroke, but for me it was devastating. I watched them have the stroke.
First, they lost all speech, then the use of their right arm and then the right leg gave way and they collapsed to the floor. I knew this was serious and for a time their life was on the line – I honestly didn’t know if I wanted them to live or die at that stage as it was obvious that if they lived, they were going to be disabled. For around eight weeks, they had no swallow and no speech, couldn’t even grunt. It was difficult to read their mood, because there was no sound to accompany laughter, crying, sighing, yawning etc… absolutely silence! Eventually the slack vocal cords tightened up and they were able to make a sound and repeat words.
However, word finding difficulties are profound and they are unable to write many proper words either.
Up until the pandemic struck twelve months ago, I poured my energy into trying to get my partner to the best that they could possibly be, with activities to make their life meaningful.
Meanwhile, once they had joined various groups, I was able to grab a little bit of respite while they were at one of the groups or while we had a carer at the house. There were a lot of highs and lows on the way. I am very disappointed that there has been no significant improvement in speech. I had been very sure that the technology route would help, but sadly all efforts on that front have come to nothing.
However, I have been pleased and delighted with the way my partner has joined various groups and embraces all opportunities that come their way. The Living with Aphasia Group in particular, has been an absolute ‘life saver’ for us both.
In conclusion, I am glad that they lived, as they are happy in themselves and still have a life worth living. In essence my partner is still their old self, with the same interests and sense of fun and they do provide me with companionship.
However, sharing a life with a disabled, non-verbal spouse is very isolating, with all the negative aspects of being a widow; namely having to do everything yourself, having nobody to share opinions with or have a laugh with (except on quite a childish level), spending evenings alone (they go to bed very early) and none of the advantages of freedom to move forward with my own life by making new friends, discovering new interests, and visiting new places. The routine of taking care of them is mind-numbingly boring, with no end in sight. The boredom, loneliness and isolation have of course been made so much worse by the pandemic.
I have read a very useful book by David Kessler called “Finding Meaning: The sixth Stage of Grief”. Having read it I feel sure that I have gone through the five standard stages of grieving for my pre-stroke partner, right up to and including acceptance, but once the pandemic is over, I need to concentrate more fully on the sixth stage and find more meaning for my own life, whilst at the same time reinstating the status quo that my partner’s life had reached before lock-down.”