The journey continues... 8 months in.. Couple? 's

pfd161

New member
Joined
Dec 31, 2018
Messages
8
Reason
CALS
Diagnosis
01/2019
Country
US
State
ME
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
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,576
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
If she has work credits she should be eligible for ssdi rather than ssi. If she has the work credits and is not working with an ALS diagnosis she should get ssdi and Medicare after a 5 month wait period. It can be backdated and probably could be if she has not been making too much.

How to handle your work hours depends on your family and friends and their willingness and how large her needs are. Whatever you choose have a plan b

Re her family choosing not to test. Many potential carriers don’t. If their children are of child bearing age I hope they have been told. Ivf is an option some choose
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,515
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Dennis,

Most of us were fortunate enough not to have 24-hour shifts outside the home, so most often overnight care is shouldered by family. If you have room in your home and the location is desirable, one less expensive option might be live-in help, even a student, who can sleep when not being summoned.
 
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