affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
Welcome keri.
There were a couple of things that stuck out to me from your post:
1. that he was a good actor - it's often not realised about FTD and was one of the absolute hardest parts of it for me at the time and even now after he is gone. When anyone was around he was Mr positive "I'm fighting this", and people were in awe of him. Same on fb he would only post occasionally but always positive stuff and people would say he was their hero.
For me, that meant that if I were to step up and say what was really going on it was like I would have exposed him as a fake or something. That's how it felt anyway. Now that he is gone it feels like I would be trying to destroy the 'good' memories others have of him if I were to talk about it.
2. a person with dementia has one important thing all the way to the end: feelings.
That really struck a chord with me. No matter what was happening to Chris, I knew that his feelings were really important to me. I couldn't stop his paranoia and I couldn't truly soothe his rage, but I could try to look for triggers and avoid them. I hated the most to think that he lived in a world where he thought such paranoid thoughts about me in particular, but about everyone and everything that was happening.
There were a couple of things that stuck out to me from your post:
1. that he was a good actor - it's often not realised about FTD and was one of the absolute hardest parts of it for me at the time and even now after he is gone. When anyone was around he was Mr positive "I'm fighting this", and people were in awe of him. Same on fb he would only post occasionally but always positive stuff and people would say he was their hero.
For me, that meant that if I were to step up and say what was really going on it was like I would have exposed him as a fake or something. That's how it felt anyway. Now that he is gone it feels like I would be trying to destroy the 'good' memories others have of him if I were to talk about it.
2. a person with dementia has one important thing all the way to the end: feelings.
That really struck a chord with me. No matter what was happening to Chris, I knew that his feelings were really important to me. I couldn't stop his paranoia and I couldn't truly soothe his rage, but I could try to look for triggers and avoid them. I hated the most to think that he lived in a world where he thought such paranoid thoughts about me in particular, but about everyone and everything that was happening.