pfd161
Member
- Joined
- Dec 31, 2018
- Messages
- 13
- Reason
- CALS
- Diagnosis
- 01/2019
- Country
- US
- State
- ME
- City
- Sanford
Sharon was diagnosed officially in January.
She has the C9 abnormality. Her dad developed FTD 3 years ago so that led the team to genetic testing.
Her 2 brothers have decided not to get tested, which I'm conflicted about as they have children. I think I would want to know but it's one of those things, I guess they will fall back on their religion and go from there.
I'm the primary caregiver and partner. We were never married and have been together 10 years.
In 2 weeks I go back to work. I'm a firefighter and work 24h shifts.(been out with thumb surgery). I'm stressing right now because I dont have care lined up. She can not be alone at night or for more than a couple hours during the day.
Her mom is going to stay during the days but what do I do about nights? Do most hire a private caregiver? Or rely on family /friends?
She can barely walk with her rollator, needs help out of bed, toileting, showing and dressing. She eats most things but aspirates almost daily. Time for a PEG for sure...which I'm not sure she wants.
She has a Porta cath and gets radicava which doesnt seem to be slowing things at all.
Her speech Is nearly incomprehensible, she texts me with her phone. I'm amazed she hasnt developed a pneumonia yet.
She still works a few hours from home and maintains private insurance. She gets long term disability as well.
Her deductible resets in January and I wonder if she should go with medicaid /Medicare and ssi?
She could stop working anytime.
Long frustrating journey, she seems content to stay at home, when I want her to live what she has left. Heartbroken and stressed.
Dennis
She has the C9 abnormality. Her dad developed FTD 3 years ago so that led the team to genetic testing.
Her 2 brothers have decided not to get tested, which I'm conflicted about as they have children. I think I would want to know but it's one of those things, I guess they will fall back on their religion and go from there.
I'm the primary caregiver and partner. We were never married and have been together 10 years.
In 2 weeks I go back to work. I'm a firefighter and work 24h shifts.(been out with thumb surgery). I'm stressing right now because I dont have care lined up. She can not be alone at night or for more than a couple hours during the day.
Her mom is going to stay during the days but what do I do about nights? Do most hire a private caregiver? Or rely on family /friends?
She can barely walk with her rollator, needs help out of bed, toileting, showing and dressing. She eats most things but aspirates almost daily. Time for a PEG for sure...which I'm not sure she wants.
She has a Porta cath and gets radicava which doesnt seem to be slowing things at all.
Her speech Is nearly incomprehensible, she texts me with her phone. I'm amazed she hasnt developed a pneumonia yet.
She still works a few hours from home and maintains private insurance. She gets long term disability as well.
Her deductible resets in January and I wonder if she should go with medicaid /Medicare and ssi?
She could stop working anytime.
Long frustrating journey, she seems content to stay at home, when I want her to live what she has left. Heartbroken and stressed.
Dennis