Caregivers Leave (and a little rant)

[Kelly5538]

I know that we do not know anything in regards to time frame, but then how will I know when to take (if I do) Caregivers leave? I believe here in Ontario we get 32 weeks, how do I know when to do that? Hubby started symptoms last year and was formally diagnosed in January this year. At that point his left arm was weak and his left leg a little. Skip to now, 3 months later and he can barely walk, uses a cane on one side and me on the other, should be in wheelchair but is stubborn as heck. Left arm is completely unusable. He is starting to choke on liquids and his voice is very low and hoarse, sometimes he sounds like his mouth is full of marbles or is completely drunk (which he isn't). Nurse comes in once a week, his lungs are clear but last week BP was 106/65 or something like that.

I see people post about how years into it their spouse is starting to lose mobility, and here we are, 3 months post diagnosis and I can see within the next few weeks there will be no walking at all. I know there is no time frame but jeez, isn't this fast???? Plus he has no plan to accept any aids suggested to him. Dr wants him to see neuropsychiatrist, hubby says no. OT wants to try a walker, hubby says no. SLP wants to show him tech aids for speech, no. Grrrrrrrr I am beyond frustrated. I believe he also has FTD but since he refuses the psychiatrist we don't know.

Also, he is mad because I am looking into home renos to help (ramps, lifts, etc) and he doesn't want to spend money on that.

Help? Lol

 

[Atsugi]

Lots to consider, there. And very important topics.

At work (in the US federal government), we are allowed 12 weeks family leave, with another 12 weeks optional. My employer (the VA) was very good giving me all the time I might need.

When to take it? Sounds like your PALS is progressing quickly at this time. My PALS had extremely rapidly progressing ALS. Drop foot in November, Diagnosed in December, using a cane in January, a walker in February, a wheelchair in March...

So I took leave immediately. The big deal in your case, in my mind anyway, is choking. You might want to start your leave now.

Concerning money, I get it. Two possibilities come to my mind. Maybe he wants to save money in case he needs it down the road. OR it could be that he wants to ensure that YOU have the most money possible once he's gone.

Just my thoughts.

 

[affected]

Kelly I'm glad you asked all this.

It is very hard to work these questions out as ALS is so different.
My husband Chris was bulbar onset with FTD. He was gone 11 months after diagnosis.

I could relate with what you wrote - everything they want your hubby to look into to help manage things he is refusing. This does not signal FTD on its own, but usually the CALS 'knows' when FTD is playing in the game because they see the very real personality changes and patterns of behaviour. So as it's still early since diagnosis as he may be simply having trouble accepting the horror of what is happening, especially with the speed and hoping he can hide his head for a bit. Or he may not understand the reality, nor the cause and effect of choices if FTD is involved.

To be honest, I can't answer when you should start your leave, but if you feel he isn't safe on his own then you need to start planning fast. Sadly PALS do die from head injuries falling.

Your choices are more than black and white though.

Maybe you have friends or family who could be with him some days, or enough of some days for you to start taking some leave but still work part time if you can take the leave that way?

Or maybe you can hire someone some days, and reduce to working part time?

If it is all or nothing, and he is not safe, you may want to consider taking leave now, or very soon and then see what happens in the timeline of things and work it out when your leave is up.

I hope you are not going to be dealing with FTD as it is so emotionally draining to be dealing with rage every step of the way, instead of working as a team xx

 

[Kelly5538]

The reasons I think FTD is yes, personality changes. Actually, I believe that FTD symptoms showed up first. Last year he became very unempathetic (is that a word?), stopped any socializing, became very selfish and just downright mean - not physically but with words. I was actually considering leaving him because of it.

 

[gooseberry]

One question I have is can uou start leave and go back to work if things stabilize then go back out for the remainder of time or is it one shot at the leave? Selfishly, I would take it off and relieve the anxiety and stress of what if and so you get as much good time with your pals while you can.

 

[affected]

Kelly that sounds like very typical FTD onset.

It's also typical that 1 - 2 years before ALS symptoms you notice these behavioural changes creeping in.

It was that way with Chris too. At first I couldn't put my finger on anything, but over time the patterns became obvious and the real changes to personality they produced.

 

[Dave Kerwood]

Agreed Tillie, however, with Julie the FTD started about 8 years before any symptoms and diagnosis of MND. It is quite rare to have FTD then MND but more common the other way around MND then FTD, although extremely rare to have both if you crunch the numbers as you know.

Dave X

 

[Atsugi]

Regarding leave. The law doesn't say if you can take it all in bulk or take it a piece at a time, but my boss let me do both. At first I only took Wednesdays off, and it was counted against the 12 weeks basket leave.

Talk to your boss and to HR to be sure they're happy with your plan.

 

[affected]

thanks Mike, I was hoping it could be done in smaller amounts. Seems it may depend on the employer as to what they will work out with you?

 

[affected]

When reading on FTD+ALS it is always wise to check the date of publication.

Leaps and bounds have been made in the past 5 or so years and FTD is no long considered rare when combined with ALS, around 50% of PALS are known to suffer some degree of cognitive issues.
Most of the behavioural variant was explained away by the health professionals for years, so old figures are skewed and inaccurate.

It is very common for FTD to start before ALS, but either way or simultaneously can happen - it's as unpredictable as ALS alone.

 

[Kelly5538]

I know it doesn't need to be said, but this disease sucks ��

 

[Kelly5538]

I'm in Canada. The laws may be different here, I will have to check. Right now I am very lucky because my employer is letting me work mornings in the office and I work from my home office in the afternoon. I find I am making stupid mistakes though and I know it is because my mind is just all over the place

 

[ShiftKicker]

Hi Kelly-
I'm in BC, so the laws may be a bit different, but what I rustled up in a search is the following:

Legislative Assembly of Ontario | Bills & Lawmaking | Current Parliament | Bill 30, Family Caregiver Leave Act (Employment Standards Amendment), 2012

Your local ALSOn society may have information resources you can access, as well the clinic you go to (not sure which one it is). I have access to a social worker who is supposed to give me information about such things via the local ALS clinic. You also have some sort of health portal that should help you get the info you need (but is, of course, a bureaucratic maze): Health Gateway - Browse Resources

So sorry you're struggling with this. I hope someone at your clinic, or at a provincial resource office can give you the straight info about such matters.

Fiona

 

[ShiftKicker]

More info here: Advocacy | ALS Canada

Hopefully you find some respite and some resource help from your local ALS chapter