Caregiver question

[sjpowers51]

My husband has FTD(dementia) with MND/ALS and is now requiring nearly full time care. He has made it very clear that he "wishes" I would be home with him all day every day. He is very sincere about this, not demanding at all just "wishes". I have a full time job and can take FMLA although it will be a financial burden.

It breaks my heart to think about others taking care of him and he gets a bit anxious about it. If I don't stay home will I be sorry, if I do stay home what happens after 12 weeks when my FMLA is gone and I have to go back to work? Help need objective opinions badly.

What would you do?

:sad:

 

[Blackpool]

Would you be able to work partime for your company without loosing your full time status?

 

[BethU]

sj, it is a heartbreaking situation! My husband also has mild dementia with Parkinson's, and I am fighting to keep him out of a nursing home, which he would hate. We have a p/t caregiver, but when she's not here, I can't help him when he falls, and it wears me out to even prepare much of a snack for him.

However, after six months, he is quite used to our caregiver. She can take him to scan and blood-test appointments without me having to go along and sit with him. He gave me heart-breaking looks as she wheeled him out the door at first without me, but now he knows her (although he thinks she's actually two different people, but he gets along with both of them, so it's OK) and I trust her. It is SUCH a relief to have confidence in the person caring for him. Now when they leave for another test, he just gives me a wave and I take a nap!

How about this solution: You find a good caregiver and take leave for 12 weeks to be there with both of them. In that time, he will begin to feel she is one of the family, and you can assure yourself that she understands his needs and is fully sympathetic and competent. Let her prepare and serve his meals, help with dressing, etc., while you are within sight or calling at first, to reassure him. Perhaps after two months, you can go back to work p/t to ease the transition. After your leave is over, you will both feel more comfortable and the shock to him will be much less.

Good luck. It is hard.

 

[sjpowers51]

I am hoping pt will be an option - FMLA is based on hours not necessarily 12 weeks in a row. I also like the idea of taking some time off and trying a caregiver that I can oversee to assist me in trusting and his adjusting.

Thanks!

 

[Katie C]

Beth.. what a brilliant idea! As one also living with a spouse with FTD, I know the anxiety is a major issue... the idea of giving him a little time to get used to a caregiver when you're still there is a really really good idea.

 

[lovelovelove]

maybe you should think to stay home for a time, bcos ALS patients dont have too much time.
after 12 weeks , maybe there will be another solution for this. so pls dont worry.

 

[shelleynshaggy]

I also have a hubby w/ FTD. Fortunately he is still able to care for himself and our girls. However, I have applied for intermittent FLMA. It allows me to take days off that don't count "against" me at work. Check your FLMA - a lot are 6mos. Maybe you can take a day or two a week (you can use the break in caregiving!) We plan to move in with my parents when "the time comes." I work weekends fulltime and weekdays part-time. I will give up my part time position and my mom will watch the kids (and Jim) while working during the weekend.
Contact your local ALSA - they may have resources to help you. I heard there is a great article about respite and caregiver care in Dear Abby today - havenot read it yet - mom saved it for me.

 

[Big Mike]

maybe you should think to stay home for a time, bcos ALS patients dont have too much time.
after 12 weeks , maybe there will be another solution for this. so pls dont worry.

No offense, but that's not true of all ALS patients. Some live a long time.

 

[rowland's wife]

I chose to stay home with my husband I used all my FMLA, but I took a leave of Absence I won't lose my job until 1 year is up, check with your employer about a leave of absence

 

[Looserope]

I don't know what type of work you do but maybe working a couple of days from home (telecommuting) is an option. My employer was very understanding and set me up with a laptop so I have complete access to be able to do my job but still be home with my husband.

 

[tdamess]

what ever you do the best of luck to you

 

[Jeannie]

Thinking of you! This is so difficult to find good care while you work, always remember to take care of yourself too. You are in my thoughts and prayers.
In friendship
Jeannie