Ginni
Forum Replies Created
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Hi, Kathleen – I too, am the only caregiver, full-time, for my husband of 30 years. His symptoms have rapidly and greatly deteriorated in just this last year. He does Nothing for himself, Nothing to improve his situation. A major turning point: he is apparently now unable to get out of the bed. It’s been two weeks, and this is not going to get better. My duties have increased at least four-fold, as have my emotions. When you express how difficult it is “to maintain my level of calm which is nearly impossible” – I jumped a little inside – cuz that’s me, for sure. I have always considered myself to be a very patient and kind person, but I really have to control my outward expressions of impatience, disappointment, anger even. We are completely isolated socially and geographically, too. This is not going to get better, only worse, and I’m afraid; I’m sure he must be, too. I’m trying to work on compassion and self-compassion… Thanks Katherine for your honesty. I appreciate your hard work. Feels like I have a friend in the universe.
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Thank You, DTM – I hear you loud and clear! I swear I’m hearing an echo – of what’s inside me, too. More later; I’m exhausted… from a kindred spirit, struggling
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I am a true music lover. My husband of 28 years was a master of Classical Guitar, trained from a very early age. He had the great good fortune to be among the few to study with the late great Andres Segovia. Robert made classical guitar his career.
About 12 years ago he was diagnosed with Parkinson’s, and continued his beautiful music for a few more years. Although his progression was very slow, one day came when he just stopped. Quit. Never picked up a guitar again. No explanation, no discussion. There are at least 5 fine instruments sitting in the closet.
In the last year or two his symptoms have really increased. He will do nothing for himself. Nothing. He cannot walk enough even to see a doctor. We are completely isolated, no friends, no resources. Just one house-helper two or three times a week. He won’t let her into his room to clean.
There is no music in the house. None. He stopped even listening to music a very long time ago. Although my health isn’t great, I am his only caregiver. I try to keep a small flame of joy alive in my heart every day.
Blessings to all of you for the music in your lives! -
This is the anguish. Detachment, alienation, extreme mental and physical exhaustion. I have always had a deep well of compassion, and a long history of being helpful in times of crisis. Now, after a dozen years, his complete unwillingness to do anything to help himself, and recent rapid decline, my well is dry. We live isolated from the world. And both of us inhabit separate realities. I frequently fall into a dark place, where even taking care of myself has become a problem. I know it’s not my fault that he has a terrible illness, but I feel like a kite struggling in the wind.