Losses

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My losses are a bit different. M was diagnosed with PLS 16 years ago. The good news is we have had time to adjust to the losses. I call it grieving in little pieces....the bad, I have been “grieving” for such a long time. I am a retired pediatrician and have always known what was ahead. I am a problem solver so I try to keep ahead of the changes but that carries it’s own pain as M lives his life day by day.

He is permobil bound. His spasticity is such that that he needs help with transfers, turning over etc. the good news he has upper body strength so can help. We have adjusted to sharing our lives with two wonderful aides, one of whom has just moved in. We got a van that has us able to go on outings. His speech is becoming unintelligible. His swallowing is pretty compromised but he clears his airway. We did renovations early on, so now he can navigate his living space. We overlook a beautiful tidal river....We got to travel, We have two wonderful dogs. I could go on with the good.....

Then there is the bad. A number of episodes with the baclofen pump that nearly killed him, a heart attack, a broken hip, a broken clavicle. A stubbornness that resists the changes and ways to improve them. His anger at the disease that manifests itself as anger at me. The loss of intimacy, and long conversations. The atrophy and changes in his body.....all of these we equilibrate to a new normal.

The last year, M’s memory has been failing. Trips we have taken, movies we have seen, people we have been with....and now the slow decline of thought process. This has been the biggest loss and I am struggling mightily. It brings new meaning to living in the moment. I am trying not to catastrophize as that paralyzes me.
But oh what a loss this is!
 

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