Care for CALS

[JILLLEKATZ]

Hello Everyone,

How did or do you find time to take care of YOU?? My husband and I are new into our journey with ALS. I have been told over and over to take care of myself so I can take care of my husband. HOW do you find time??? I need to work full time. I don't want to eat up my "sick" hours for myself when my husband needs so much care.

Please help me find a solution.

 

[lgelb]

I'm sure we will all have different answers, but I think what people tell you that you should do in terms of self care, vs. what is actually possible, is very different. The "take care of you" thing sounds sweet, but in reality most of us did not have or take sick days whether working elsewhere or not, and our lifestyles during the ALS years were not the healthiest. "You time" while you are not at work is likely to be snatched in short bursts during the 24-hour routine.

So in terms of specific advice, yes, I would save your sick days to the extent that you can. If you have something contagious, I don't know if you can "work from home?"

The reality is, our PALS come first, as they should.

Best,
Laurie

 

[wishmobbing]

Working full time is a b**ch. Don't be too proud to give easy tasks away early. They stack up. I know you can do all that. Every single thing is not much work and time. All things combined with the mental stress is plain too much. If you ever feel bored you achieved what you're looking for.

Help with the boring everyday chores is a time saver. Shopping, laundry, mowing the lawn. In my experience many helpless bystanders are happy to do that for you. It's a lot of organisation. Kim T might tell you about getting a Lotsa helping hands account. I have a messager (whatsapp or telegram) group set up so I can tell everyone interested at once how we are doing and what's going on. And if I want to go to a birthday party I ask if anyone wants movie night with my boyfriend and sit with him.

The best shot at really getting time for yourself is to let take others care of your PALS. This gets harder every step of the way. So it's good to school friends and family early on. Let them get to know the equipment, many are scared by technology or making mistakes. I tell everyone that I make mistakes all day long, tell them they can call me for a crisis and try to get out for ice cream or to see friends.

 

[affected]

Wish makes great points - often people want to help but are scared of being in the thick of it. Allowing people to help, and having them do all the mundane bits and pieces can so free you up to both be with your PALS, and have a little to yourself.

So often we are so busy doing, we don't get to just 'be'.

Another thing is to try and really sit down and figure out what means the most to you in terms of quality, and figure a way to have that in your life. For some it's getting out and doing something, for others it's a bath. Whatever it is, if you can start now by making sure there is something that is just for you, it will be far easier to continue this. If you don't do this now, then it truly is harder to start having something for yourself later when your husband is far more dependant.

 

[Nuts]

Great answers already! I'd like to add my voice to those telling you to include people early on. It's much harder to train them on everything once things get complicated.

As for yourself. Even three minutes of peace can help you immensely. If you have a moment or two, try to clear your mind and relax your body. Do it as often as you can. Eventually you will get more skilled at using the short moments to do a bit of relaxation.

For me, a hot bath is one of my favorite me things. There's not always time, but I've treated myself to nice bath products so that when I do have time it's even more special.

Take care of your health issues now. It will get harder later on to get away. I keep having to cancel appointments because we're back in the hospital...

Becky

 

[Lkaibel]

Concentrate on getting as much sleep as you can, and do eat. Note I am not lecturing “eat healthy” , remember to eat! These things get harder as time goes on, but to the extent you can do them. You are his primary caregiver, and if you are always on empty his care will suffer.

Try to have a friend or relative over from time to time just so you can spend a few hours with a friend at a movie or lunch or whatever (assuming he can’t be alone). It may feel “ selfish” but it will make you feel renewed and make you a better caregiver.

This whole thing exists in such a different paradigm. I don’t think in terms of “him first, me second”. There is only us, and to a real extent he is at a given point in time doing about as well as I am so I better keep myself as whole as possible.

That said, there are some “luxuries” of self care you forget about and those will become more apparent to you as time goes on.

 

[wishmobbing]

Lenore, you nailed it!
A bit of egoism is healthy to not lose yourself or your PALS will lose the person he fell in love with.
Also there's an instance of very practical egoism I practice: if my boyfriend says that he wants to use the toilet I call "women and children first!" and shoot into the bathroom real quick before I start the whole dog and pony show with the lift.

 

[MarieLaure]

Ha, that's a good one. Although my dad can still walk a bit, I stay ready when he wants to go because sometimes he needs help. I rush and shout "I'll save the planet !" since we only flush once if we go just one after the other.

 

[Lkaibel]

Wish, I feed myself right before I feed him so I am not sitting there crabby and hungry.