
My husband has outlived his prognosis, which is great, but I'm so, so tired I feel like we're not feeling much joy any more. He has bulbar onset and everything is like a mental puzzle because he can no longer support his head at all. Cleaning his teeth is exhausting as I need to brush, suction and push his jaw down at the same time so his breath always smells bad. He refuses mouth wash, breath freshener or moisturising gel/toothpaste. He cannot swallow but insists on trying 4 or 5 times a day leading to lengthy suctioning sessions as his "technique" leads to the water pouring out of his nose. His left arm is very painful but he refuses to sleep in any position other than on his left side. He refuses to sit as the physio has recommended and sits slumped in his recliner with his head flopped down. He repeatedly tries to get out of bed on his own and falls, leading to a disturbed and anxious sleep for me. He can still walk but has very limited use of his right hand only so I need to take him to the toilet, undress, redress,about 15 times a day. He has become very critical of the care I give, so much so that I dread opening emails from him or waiting while he slowly types something on his grid pad. I put his BiPAP mask on and every time he insists on it being adjusted, even though it is in a perfect position. He refuses to accept he is dying, preferring instead to believe his strong faith will save him at the last hour, so I don't know anything about our financial situation, who provides our gas, home insurance etc. I know why he's doing all this, I know why I need to follow him around with his suction, BiPAP, grid pad, water, clothes protector, handkerchiefs, and why we can only sit together for 10 minutes before he needs something, and I don't want him to die but I needed to get this off my chest. I hate this disease.
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