Dementia Chronicles: Part 3
I left Part 2 at the point when my husband had been re-diagnosed with Parkinsons and Alzheimers. At least that is what I thought. A while later it transpired the diagnosis had changed to Dementia with Lewy Bodies, ie. the dementia associated with Parkinsons.
I am not going to dwell on the development of the disease in Ian and his deterioration. What I am going to do is talk about the emotional roller coaster I go through every single day.
Living with someone who has (now) moderate to advanced DLB is like being a single parent to a toddler, but with none of the joy. Just as new parents are not pre-wired to cope with small children, so carers, even spouses, are not automatically equipped with the ability to cope with such dependency in an adult, even a much loved one.
So to the emotions:
Frustration, irritation, impatience, anger.
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Loneliness, depression, boredom, fatigue
Sympathy, pity, love
Guilt, sadness, grief
For example, when guiding him through the toiletting process for perhaps the 8th time that day, or the 3rd/4th/5th time at night, it is very easy to see how carers can loose their tempers, shout or manhandle the ‘cared for’ (ugh what a horrible term.) I don’t shout but I do sometimes speak a bit sharply and then the guilt sets in.
After an incident like his the other day when I was particularly tired, I put my arms around him, apologised for loosing patience and told him I loved him. Do you know what he said? ‘How can you?’
And I remembered again that inside this shadow of a man is the person I fell in love with 32 years ago.
